Living With HIV - Managing Your Health

Managing your health
a guide for people living with HIV
Production of Managing your health has been made possible through financial contributions from the Public Health Agency of Canada Mission Statement
CATIE champions and supports innovation and excellence in knowledge exchange for the prevention of HIV transmission, and the care, treatment and support of people with HIV by: collaborating with and building the capacity of front line organizations to use knowledge effectively to respond to the HIV epidemic; supporting and connecting people with HIV, other individuals, and organizations to develop, synthesize, share and apply HIV knowledge; acting as a central contact point for the flow of comprehensive, accurate, unbiased, timely and accessible HIV information and community-based knowledge. We do not guarantee the accuracy or completeness of any information accessed through or published or provided by CATIE. Users relying on this information do so entirely at their own risk. Neither CATIE nor the Public Health Agency of Canada nor any of their employees, directors, officers or volunteers may be held liable for damages of any kind that may result from the use or misuse of any such information. The views expressed herein or in any article or publication accessed or published or provided by CATIE are solely those of the authors and do not reflect the policies or opinions of CATIE or the views of the Public Health Agency of Canada.
Managing your health, fourth edition

2009, CATIE. All rights reserved. ISBN 978-0-9784654-3-8 CATIE Ordering Centre Number ATI-40215 (aussi disponible en franais ATI-40216) Canadian AIDS Treatment Information Exchange (CATIE)
Permission to Reproduce
This document is copyrighted. It may be reprinted and distributed in its entirety for non-commercial purposes without prior permission, but permission must be obtained to edit or otherwise alter its content. The following credit must appear on any reprint: This information was provided by the Canadian AIDS Treatment Information Exchange (CATIE). For more information, contact CATIE at 1-800-263-1638, or www.catie.ca.
Contact CATIE
By telephone 1-800-263-1638 416-203-7122 By fax 416-203-8284 By e-mail info@catie.ca On the Web www.catie.ca By mail 555 Richmond Street West Suite 505, Box 1104 Toronto, Ontario M5V 3B1 Canada
Disclaimer
Decisions about particular medical treatments should always be made in consultation with a qualified medical practitioner knowledgeable about HIV-related illness and the treatments in question. The Canadian AIDS Treatment Information Exchange (CATIE) in good faith provides information resources to help people living with HIV/AIDS who wish to manage their own health care in partnership with their care providers. Information accessed through or published or provided by CATIE, however, is not to be considered medical advice. We do not recommend or advocate particular treatments and we urge users to consult as broad a range of sources as possible. We strongly urge users to consult with a qualified medical practitioner prior to undertaking any decision, use or action of a medical nature.
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Dedication
Managing your health, fourth edition, is dedicated to the
determination and courage of the many lost to HIV/AIDS, the perseverance of those who continue to confront its many challenges, and the memory of Nitto Marquez, who died on April 29, 2008. His commitment to support all people living with HIV/AIDS is an inspiration that lives on.
MANAGING YOUR HEALTH
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Acknowledgements
Chapter Authors Chapter 1 Annika Ollner and David McLay Chapter 2 Derek Thaczuk Chapter 3 Evan Collins, MD Chapter 4 Alex McClelland Chapter 5 Devan Nambiar Chapter 6 Evan Collins, MD Chapter 7 John Maxwell Chapter 8 David Hoe Chapter 9 Paul MacPherson, MD Chapter 10 Derek Thaczuk Chapter 11 Derek Thaczuk Chapter 12 Evan Collins, MD Chapter 13 Deborah Randall-Wood Chapter 14 Deb Cameron, Eileen McKee, Kelly O'Brien, Deborah Randall-Wood, Greg Robinson, Janet Wu, Elisse Zack of the Canadian Working Group on HIV and Rehabilitation Chapter 15 Shari Margolese Chapter 16 Shari Margolese Chapter 17 Alan Li, MD Chapter 18 Kath Webster Chapter 19 Louise Binder Chapter 20 Nitto Marquez Chapter 21 Paul Higgins Chapter 22 RuthAnn Tucker Editorial Outline Review Committee Gillian Bone Shari Margolese Paula Chabanais Deborah Randall-Wood David Fletcher, MD Gregory Robinson, MD Dominic Levesque Derek Thaczuk Laurette Lvy Kath Webster Alan Li, MD Gordon Waselnuk Mona Loutfy, MD National Advisory Committee and Expert Review Alberta Community Council on HIV (ACCH) Asian Community AIDS Services (ACAS) British Columbia Persons with AIDS Society (BCPWA) Canadian Aboriginal AIDS Network (CAAN) Canadian Association of HIV Clinical Laboratory Specialists (CAHCLS) Canadian Association of Nurses in AIDS Care (CANAC) Canadian College of Naturopathic Medicine (CCNM) Canadian HIV/AIDS Legal Network Canadian HIV/AIDS Information Centre (CHIC) Canadian Working Group on HIV and Rehabilitation (CWGHR) Coalition des organismes communautaires qubcois de lutte contre le sida (COCQ-Sida) Fife House Paul MacPherson, MD Ontario AIDS Network (OAN) Pacific AIDS Network (PAN) Positive Womens Network Teresa Group Toronto People With AIDS Foundation (TPWAF) Editorial Review Stephen Alexander Jean Bacon Kevin Barlow Lucy Barney Michael Battista Glenn Betteridge Laura Bisaillon Julie Foreman Dale Guenter, MD Shariq Haider, MD Keith Hambly Rick Kennedy Dale Kuehl Paul Landers Brynn Laurillard Paul MacPherson, MD Jane McCall Doris Peltier Deborah Randall-Wood Stan Read, MD Sean Rourke Lindy Samson, MD Paul Saunders Trevor Stratton Jim Truax Karen Vance-Wallace Sharon Walmsley, MD Annette Wilkins Jessica Yee
Focus Group participants National Funder Production of Managing your health has been made possible through financial contributions from the Public Health Agency of Canada. Editorial Darien Taylor Derek Thaczuk Zak Knowles Kristin Jenkins Margaret Bream Copy editor Maureen Davis Index Anna Kohn Proofreader Heather Ann Kaldeway Web design Manuel Rodenkirchen and Sheena Gibson (Rodenkirchen Communication) book design and layout Guylaine Duval (St. Joseph Print Group) Laurie Edmiston Sean Hosein Ed Jackson David McLay Jeff Reinhart Tim Rogers
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Contents
ix Foreword by Mark Wainberg, MD How to use this book 53 1 Chapter 1 Youve just been diagnosed with HIV
You are OK You have a future How this book can help you Coping with stress Tattoos and piercings Harm reduction as a tool to healthy living
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Chapter 5 Complementary and alternative therapies

What is complementary and alternative medicine? Some examples of complementary and alternative therapies How to access and pay for complementary and alternative therapies Putting it all together: a personal perspective
Chapter 2 HIV... the basics

What is HIV? What is AIDS? What is a virus? How is HIV transmitted? How do you know if you have HIV? How your immune system works How HIV can make you sick
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Chapter 6 Your emotional health

Self-esteem Stress Anxiety Depression Drug and alcohol abuse Seeking emotional support Seeking professional help
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Chapter 3 Your healthcare team

Your healthcare professionals Putting together your healthcare team Building a healthy relationship with your doctor
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Chapter 7 Your sexual health

What is sexual health? About safer sex Preventing and treating sexually transmitted infections in both partners Sexual dysfunction Relationship issues
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Chapter 4 Healthy Living

Eating well Getting the vitamins and minerals your body needs Exercise
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Chapter 8 Positive prevention

What is positive prevention? Why is positive prevention important? Principles of positive prevention Some things to think about
Muscle problems Headaches Problems with mental and emotional health Peripheral neuropathy
105 Chapter 9 Monitoring your health

Why your health is monitored Monitoring your HIV infection Other things to monitor How your health is monitored Tests specific to women Tests specific to men
167 Chapter 12 HIV-related infections and cancers

Life-threatening infections Co-infections Other infections Vaccinations Cancers
181 Chapter 13 Hospital stays

The hospital environment Preparing to go to the hospital Being admitted Communication is the key Going home Instead of going to a hospital
125 Chapter 10 Treatments

Treatment decisions Before you start When to start? Anti-HIV drugs Choosing treatment Starting treatment Making it work Changing treatment Taking breaks and stopping treatment
191 Chapter 14 HIV and rehabilitation

Living with the challenges of HIV What is rehabilitation? How can rehabilitation services help me? The basic components of a rehabilitation program Emerging issues in HIV and rehabilitation Your role on the rehabilitation healthcare team
145 Chapter 11 Side effects and symptoms

General advice for side effects and symptoms Digestive problems Metabolic problems: fat redistribution, heart problems and diabetes Bone problems Liver problems Pancreatitis Skin problems
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207 Chapter 15 Women and HIV

HIV in women in Canada How is HIV different for women and men? Psychosocial issues for women living with HIV Your healthcare team Gynecological care of women with HIV Pregnancy and HIV Birth control Menstruation and menopause Dating, sex and relationships
263 Chapter 19 Access to treatment

How drugs are approved for sale in Canada How to access approved prescription drugs How to access unapproved drugs How to access non-prescription medications and other kinds of treatment
273 Chapter 20 Money matters

Continuing to work after an HIV diagnosis Disability programs Income replacement and other financial assistance programs Covering medical expenses
227 Chapter 16 Children and HIV

What if my child is HIV-positive? HIV in children HIV treatment for children Talking to children about HIV
291 Chapter 21 Legal issues

Legal information and legal advice HIV transmission and the criminal law Privacy and confidentiality How to fight discrimination Forced-testing laws Lawyers and legal aid Planning ahead
237 Chapter 17 Immigrants, refugees and non-status people with HIV

The Canadian immigration system and HIV Immigrants, refugees and non-status people Immigration and HIV testing Services available to immigrants, refugees and non-status people with HIV
309 Chapter 22 Housing

Types of housing Housing that meets your needs How to access housing How to keep your housing
249 Chapter 18 HIV and aging

The challenge of HIV in an aging population Is it HIV or is it age? Screening tests Coping with loss Financial issues
317 Personal health record 321 Index
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Foreword
As a researcher who has been working with people with HIV for 25 years, I have often asked myself what it would be like to be suddenly informed I was HIVpositive. How would I react? Would I be devastated? Would I believe my life had changed permanently for the worse? Would my relationships with loved ones come to an end? How would I respond? These questions are difficult, but patients newly diagnosed with HIV should be reassured that their lives need not change in many ways. In fact, I believe people who are diagnosed with HIV disease should be told that they will continue to have full, productive lives. The reason is simple. The new antiretroviral drugs now in use do an excellent job at preventing HIV from replicating and are far less toxic than the first generation of anti-HIV drugs developed before the mid-1990s. Patients today can expect their viral loads will remain suppressed enough to prevent serious consequences of HIV infection. This new edition of CATIEs Managing your health deals with issues of HIV prevention, awareness and treatment. It provides answers to almost any
About the author

Mark Wainberg is an internationally recognized scientist in the field of HIV. He served as president of the International AIDS Society between 1998 and 2000 with responsibilities that included organization of the 13th International Congress on AIDS in Durban, South Africa, in 2000. He was co-chair of the 16th International AIDS Conference that took place in Toronto in 2006. He is well-known for his initial identification of 3TC as an antiviral drug, in collaboration with BioChem Pharma Inc. in 1989, as well as for multiple contributions to the field of HIV drug resistance. Dr. Wainberg has now turned his attention to novel concepts in prevention of HIV infection in developing countries, such as vaginal microbicides and pre-exposure prophylaxis.
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question an HIV-positive person might ask, and does so in a way thats easy to read and understand. It provides comprehensive answers to almost any question patients are likely to have immediately after their diagnosis, as well as over the months and years to come. Managing your health makes the important point that patients play key roles in their own health management, emphasizing that successful HIV treatment happens as a partnership between people living with HIV, their doctors, counsellors and other caregivers. In a way, the life of every person treated for HIV disease represents an experiment in progress, since we simply do not know for how long our drugs will work well. After all, the people who have lived longest with HIV, including those on antiretroviral drugs, have now been infected for 25 years or less. The best advice to give to an HIV-positive individual is to live life optimistically and responsibly. There are many new tools in the fight against HIV, and it is safe to think even more progress will be made in the development of safe, effective treatments in the future. We all share the responsibility to try to turn the tide on this epidemic, not only by the development of newer and better drugs, but also through personal and public health measures that will prevent the spread of this virus.
Dr. Mark A. Wainberg

Director of Research at the Jewish General Hospital, Montreal Director of the McGill University AIDS Centre Professor of Medicine and Microbiology and Immunology, McGill University, Montreal
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How to use this book

Welcome to the fourth edition of Managing your health: a guide for people living with HIV, published by the Canadian AIDS Treatment Information Exchange (CATIE). Since it was first published in 1993, Managing your health has become a must read for people living with HIV and those around us who seek reliable information in plain language delivered from the perspectives of people living with this disease. This edition has a number of new features and a fresh new look. You will notice that each chapter is written by a different author, many of whom are people living with HIV, showcasing the remarkable diversity and expertise of our communities. We have included chapter summaries, highlighted key messages and added fold-out cover features, including a glossary. We hope these features will help you orient yourself and navigate easily through Managing your health. We have responded to your requests to make Managing your health more of a workbook, in which you can track your own personal health information, write notes and make the book your own. We have also included a personal health record, which you can use to keep a record of your doctors, laboratory results, anti-HIV drugs and any side effects or symptoms you might want to discuss with your doctor. Managing your health is also available on CATIEs website where there are interactive links, plus healthmonitoring and information features that help you personalize your copy.
Managing your health is based on values central to CATIE. This book reflects our beliefs that: people with HIV can do many things to ensure that they are as healthy as possible, for as long as possible; people with HIV are equal partners with their healthcare providers when it comes to making decisions about their health; knowing about HIV disease and what you can do to stay healthy gives you greater power and control in a situation where you might otherwise feel powerless.
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Though Managing your health is a big book, it doesnt pretend to cover everything you will ever need to know about living with HIV. But it does provide a guide to some of the most important issues you may be struggling with, and some of the questions you may have now or in the future. Information overload is a big challenge for people with HIV, especially if you have just found out your status. We have tried to put this book together so that you can pick and choose, taking as much information as you need. Some people read Managing your health from beginning to end. Others pick it up whenever needed and consult it about a particular topic they want to know more about. Feel free to start anywhere you like, read the information that interests you and skip the information that isnt relevant to you. And remember that Managing your health is really a starting point for your questions. CATIE has many more resources in print and online that cover other topics or provide more in-depth information on the topics covered in this book. We have made every effort to ensure the information in Managing your health will not become outdated quickly. Nonetheless, information about HIV changes very rapidly, so we recommend that, in addition to reading Managing your health, you also talk about your questions and issues with your doctor or a worker at your local AIDS service organization. You can also contact CATIEs free HIV information service from Monday to Thursday at 1-800-263-1638, by e-mail at info@catie.ca or on the web at www.catie.ca.
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Youve just been diagnosed with HIV

If youve recently found out you have HIV, you are probably starting to look around for some information on what this means. You might also want to know what you can do about it. Reading this chapter is an excellent place to start. Youre taking the first step on the life-long journey of learning to live with HIV. About the authors
Annika Ollner and David McLay joined the CATIE team in early 2006 and worked together on several projects to provide health information to people with HIV. Annikas adventures in HIV have taken her from the campus of McGill University in Montreal where she advocated for better access to HIV drugs in the developing world, to the towns of the western African country of Guinea, where she participated in a capacity-building internship around HIV prevention. Davids first connection with the HIV community was also in Montreal where he became involved at AIDS Community Care Montreal, first as a user of their services and then as editor of their monthly newsletter. David, in his role as managing editor, oversees many CATIE publications, including The Positive Side.
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CONTENTS
You are OK You have a future How this book can help you
YOUVE JUST BEEN DIAGNOSED WITH HIV
You are OK
The first thing you need to know is that you are OK. You are not going to die right away. You do not have to tell everyone you are HIV-positive. But most importantly, you do not have to pretend that everything is as it was before, because it is not. Just remember, your life is not over. You have plenty of time to deal with this news. Receiving a diagnosis of HIV changes your life forever. It is normal that you will feel a lot of different emotions as you come to accept the idea of living with
It is normal that you will feel a lot of different emotions as you come to accept the idea of living with HIV.
HIV. How are you feeling right now? Maybe youre calm, maybe youre freaked out, or maybe you were OK until someone made a thoughtless remark. Maybe youve been drinking and partying a bit too much or have retreated into your shell but now feel you cant do that forever. Whatever you are feeling, it is really important to tell yourself that its OK and to give yourself permission to feel those feelings. Its a good idea to let them outbe angry, be sad, be confident, be calm, be afraid, be numb. If you become overwhelmed by your feelings, try to be careful not to hurt yourself or those around you. Consider getting help from professional counsellors, from friends and family, and especially from other people living with HIV. Talking about your feelings can help a lot.
You have a future

You may not believe it right now, but HIV is not a death sentence. There have been significant advances in the care and treatment of HIV. People with HIV now live long, productive lives. In fact, doctors think that with treatment, many
People with HIV now live long, productive lives.
people with HIV might live out their natural lifespan. So, since youre likely to be around a while, you have a future. You can still have sex, you can still have meaningful relationships, you can still have a family and you can still have a career. Maybe you are thinking there is no point in pursuing any of the goals you had before being diagnosed. Tell yourself its OK to feel discouraged right now, but dont give up on yourself or your dreams. If you're feeling sad and hopeless or if you dont enjoy the things you normally
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do, and the feelings are not going away, you might want to speak to your doctor about it. You may be experiencing depression. This is normal and there are treatments that can help you. Are there going to be a lot of new challenges? Yesboth health related and socialbut there are services and individuals available to help you. There are groups called AIDS service organizations, sometimes referred to as ASOs, that help people with HIVpeople like you. AIDS service organizations are also a good way to meet other people living with HIV. You might not be ready to contact an AIDS service organization yet, and thats fine. Take your time. They will be there to help you when you are ready to talk with someone. You might find yourself wishing you had never found out about your diagnosis. Its true that it is hard to hear at first. But the fact that you have been diagnosed means that you can take steps to take care of yourself. Knowledge is power. Its a clich, but with HIV its true. By knowing your status, you can decide how you want to live with the virus. Maybe you won't want to know too much at first, but as time goes by, have confidence that you'll learn what you need to, and you'll find your own way of living with HIV.
There are groups called AIDS service organizations, or ASOs for short, that help people with HIV.
How this book can help you

Managing your health will take you through the steps you need to know about in order to take care of yourself as you learn to live with HIV. Some of the first things you might consider doing are locating a doctor who has experience treating people with HIV, connecting with services for people with HIV and learning how to keep yourself and the people around you healthy. Managing your health chapters that you might want to look at next include Chapter 2, HIV the basics, and Chapter 3, Your healthcare team.
The fact that you have been diagnosed with HIV means that you can take steps to take care of yourself.
This chapter is adapted from the CATIE publication Just diagnosed with HIV.
Resources
Just Diagnosed Online learning module for people who have recently been diagnosed with HIV Living with HIV: starting points Easy to read primer on viral load, CD4+ cell counts and healthy living ASO411 A listing of ASOs and other HIV-related services throughout Canada
Managing your health

will take you through the steps you need to know about in order to take care of yourself as you learn to live with HIV.
(www.aso411.ca)
These and many other relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
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HIV the basics
This chapter explains some basic but complex issues, including how your immune system works and the way that HIV can make you sick. We encourage you to browse these pages to understand more about topics such as CD4+ cells, seroconversion and other key concepts that will also help information in other chapters fall into place. About the author
Derek Thaczuk has worked and volunteered within the HIV community since his own diagnosis in 1992. He has provided practical support and home care, co-chaired the Ontario HIV Treatment Network, and served as treatment resources co-ordinator at the Toronto People with AIDS Foundation. Derek currently works as a freelance writer and editor for CATIE and other organizations to bring plain-language, understandable health and treatment information to people who are living with HIV.
CONTENTS
What is HIV? What is AIDS? What is a virus? How is HIV transmitted? How do you know if you have HIV? How your immune system works How HIV can make you sick
HIV THE BASICS
What is HIV?
HIV stands for human immunodeficiency virus. The term immunodeficiency means a weakened immune system. People who have been infected with HIV are called HIV-positive (sometimes written: HIV+). HIV is a virus that weakens your immune system, which is the internal system that defends your body against disease. Your immune system is supposed to protect you from infections, but HIV can sneak past it and then attack your body from the inside. If your immune system becomes weak enough, you can become sick from other infections.
HIV is a virus that weakens your immune system, which is the internal system that defends your body against disease. If your immune system becomes weak enough, you can become sick from other infections.
What is AIDS?
AIDS stands for acquired immunodeficiency syndrome. If HIV is not treated with anti-HIV drugs, your immune system generally becomes weaker over time. Eventually, you can become sick with a life-threatening infection, at which point you are said to have AIDS. With proper treatment with anti-HIV drugs, most people with HIV can avoid getting AIDS and stay healthy for a long time.
What is a virus?
Viruses (like HIV) are strange. They are the very simplest and smallest of all living thingseven smaller than bacteria and other germs. In fact, its hard to say whether viruses even count as living things at all, since they cant reproduce on their own. To reproduce, viruses need to infect living cells and fool them into making more viruses. These newly formed viruses then go on to infect other cells. HIV is a virus that can infect cells of the immune system, including the allimportant CD4+ cellsthe very cells that are supposed to fight off infections. Thats what makes HIV so dangerous. When describing how viruses like HIV reproduce, we actually use the science-fiction-sounding word replicate. In a way, viruses really are just ultra-tiny robotsmachines that do little more than make more of themselves. Unfortunately, in the process, they can cause great damage to the body theyve infected.
HIV is a virus that can infect cells of the immune system, the very cells that are supposed to fight off infections.
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How is HIV transmitted?

HIV infection happens when enough HIV from an HIV-positive person gets into an HIV-negative persons body. This cant happen through casual contact, such as shaking hands, sneezing or touching a doorknob or toilet seat. HIV infection only happens when body fluids with a high amount of virus get into the other persons body. Only five body fluids can contain enough virus to infect someone else: blood, semen (including pre-cum), vaginal fluid, anal fluid and breast milk. Infection can happen during sex, during childbirth and through needle use (by sharing used needles or works). There is little or no risk of HIV being transmitted through unbroken skin. However, transmission can happen much more easily through the mucosal membranes. These are the wet linings of body cavities like the vagina, rectum and urethra (the pee hole in a mans penis or a womans vulva). HIV can infect cells in the lining of the vagina, rectum and penis even if the tissues are healthy. Having a sexually transmitted infection like herpes, gonorrhea or syphilis can make it even easier to transmit (or be infected by) HIV. So can any other damage to these tender tissues, which can easily happen during sex. Sexual activities that can easily lead to HIV transmission are called high risk. High-risk sexual activities include vaginal or anal intercourse without a condom. Some sexual activities, such as oral sex, pose only a low risk of HIV transmission. While these activities can lead to HIV transmission, the chances are much smaller than they are with high-risk activities. Other sexual activities pose no risk for HIV transmission. These include kissing, hugging, mutual masturbation and massage. HIV can also be transmitted if you share needles or other equipment to inject drugs such as heroin, crack, steroids or hormones. It is important to be aware of these risks so that you can prevent spreading HIV to your sexual partners or anyone you share drugs with. It is equally important for you to protect yourself from reinfection with HIV, as this could further damage your immune system or expose you to a strain of HIV that is resistant to certain kinds of anti-HIV drugs (see Chapter 10, Treatments).
HIV THE BASICS
HIV infection happens when enough HIV from an HIV-positive person gets into an HIV-negative persons body.
Having a sexually transmitted infection like herpes, gonorrhea or syphilis can make it even easier to transmit (or be infected by) HIV. So can any other damage to the tender genital tissues, which can easily happen during sex.
HIV THE BASICS
How do you know if you have HIV?

In order to find out if you have been infected with HIV, you need to have a blood test. This blood test, often incorrectly called an AIDS test, is actually a test for HIV antibodies. Antibodies are produced by your body as a reaction to infection with HIV. An HIV antibody test looks for the presence of these antibodies in your blood. A needle is inserted into a vein in your arm and a sample of your blood is taken.
In order to find out if you have been infected with HIV, you need to have a blood test for HIV antibodies.
It is sent to a lab to be tested for the presence of these antibodies. After about three weeks, the test results come back to the office where you had the test done. However, there are new rapid HIV tests available. The entire process with the new tests, including taking a drop of blood from your finger, along with HIV counselling before and after the test, takes about 20 minutes. The results that you receive from the rapid test are very accurate. Since HIV antibody tests look for antibodies and not the virus itself, you need to wait to be tested until HIV antibodies are made by your body.
A positive test result means that you have been infected with HIV. You can transmit the virus to people if you have unsafe sex or share needles with them.
The period of time from when you are infected with HIV to when antibodies appear in your blood is often called the window period. During the window period, the HIV test may give a negative result even though you have HIV. Newer methods of testing are shortening the window period. Talk to your doctor or HIV tester about the window period for the test being used. A positive test result means that you have been infected with HIV. You can transmit the virus to people if you have unsafe sex or share needles with them. A positive test does not mean that you have AIDS or that you will get it. It does not give you any additional information about the state of your health.
How your immune system works

Germs are all around us (and often inside us). Theyre not always bad. Some are even helpful: for instance, your intestinal tract is loaded with friendly bacteria that you need for proper digestion.
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Many kinds of germs, however, can make you sickfrom mild, passing illnesses like a cold, to serious or even life-threatening infections. Fortunately, your immune system usually protects you from germs by recognizing that they dont belong in your body and destroying them. Your bodys first line of defence is the skin. The skin covers the outside of your body, acting as a physical barrier to germs. If there are breaks in your skin, even very small ones, they can provide vulnerable spots where viruses and other germs can enter the body. Your mucous membranes are the soft, wet linings of your mouth, nose, genitals and anus. The mucous membranes also defend your body on the cellular level against germs. This cellular-level defence is called mucosal immunity. But mucous membranes are not a perfect barrier. Small breaks and thinning in these membranes can create entry points into the inside of your body for viruses and germs. Luckily, theres far more to the immune system. The immune system is made up of chemicals, cells, tissues and organs. The most important elements are white blood cells. These white blood cells patrol the body, moving through your blood and lymphatic system. Your circulatory system, made up of your heart and blood vessels, carries blood to all the organs and tissues of the body. Your lymphatic system carries a clear fluid called lymph to different parts of the body. Lymph sweeps germs into the lymph nodes located in your armpits, neck, abdomen and groin. There, immune cells ambush the germs. When youre fighting off the flu or other infection, you can often feel swollen lymph nodes in your throat and groin. This is a sign that your immune system is actively fighting the infection.
HIV THE BASICS
Your immune system usually protects you from germs by recognizing that they dont belong in your body and destroying them.
CD4+ cells play a central role in the immune system.
CD4+ cells
Different kinds of white blood cells work as a team to recognize and destroy intruding germs. Specialized white blood cells also search for any of your own cells that are already infected. They destroy these cells to prevent infection from spreading further.
HIV THE BASICS
CD4+ cells play a central role in the immune system. Theyre often described as the quarterbacks or generals of the bodys defensive team or army. If youre not big on sports or the military, you can just think of CD4+ cells as central to fighting off germs. CD4+ cells help recognize infection. They also co-ordinate all the other parts of the immune system to provide an organized response.
How HIV can make you sick

When the immune system becomes weakened enough by HIV infection, other infections can become serious problems.
Unfortunately, CD4+ cells are also one of HIVs favourite targets. HIV attacks and destroys CD4+ cells, one of the most important parts of your immune system. This eventually leaves your immune system weak and unable to defend you against serious illnesses. The body fights back by constantly producing new immune cells. However, if untreated, over time, the virus tends to win out. The immune system becomes less and less able to suppress HIV and other infections. It also becomes less able to control the spread of certain types of cancer cells. When the immune system becomes weakened enough by HIV infection, these other infections can become serious problems. If HIV is not diagnosed or is not treated with anti-HIV drugs, it moves or progresses through several distinct phases. Some people progress very quickly, while others live with HIV for many years without developing a lifethreatening infection. With HIV treatment now available, most people remain healthy and do not go through all of these stages.
First stages of HIV infection

Primary infection refers to the time when youre first infected with HIV. Many people are not aware that they are even infected with HIV at this point. Nonetheless, during this stage the virus multiplies rapidly. Within two to four weeks after infection, you may experience flu-like symptoms such as fatigue, fever, sore throat, swollen lymph nodes, headache, loss of appetite or skin rash. This illness usually lasts less than two weeks, although it can last as long as 10 weeks. (Not everybody has these symptoms, so theyre not a reliable
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way to tell whether or not youve been infected.) During this period, the immune system is learning to recognize HIV. It has not yet developed killer proteins known as antibodies to attack the virus in any significant way. This means that: the amount of virus in your blood may be very high; your CD4+ counts may drop until your body responds to the new infection; standard HIV tests could show that you are not infected even though you actually are. This is because the tests look for HIV antibodies, which your body hasnt developed at this stage; you can still pass HIV on to someone else. In fact, you are most likely to pass the virus on to others when youre newly infected, because theres so much HIV in your body. When your body develops antibodies to HIV, this is known as seroconversion. This usually happens one to three months after infection. The blood test for HIV, which actually looks for the antibodies, not the virus itself, will only give positive results after you seroconvert. Around this time, the amount of virus in your blood (known as your viral load) will come back down after the high spike seen during the primary infection period.
HIV THE BASICS
Within two to four weeks after infection, you may experience flu-like symptoms such as fatigue, fever, sore throat, swollen lymph nodes, headache, loss of appetite or skin rash. During this period, the immune system is learning to recognize HIV.
Next stages of HIV infection

You may feel perfectly well for a long time during the stage of HIV infection that follows seroconversion. Although your immune system hasnt eliminated the infection, it is able to more or less hold its own against it, meaning the virus and your body now co-exist in a kind of standoff. Your CD4+ cell counts and viral load will remain relatively stable, although your viral load may go up if youre fighting off other infections such as a cold or the flu. You will not have symptoms of HIV disease, which is why this stage is sometimes called asymptomatic infection. This is the longest stage of HIV infection (see graph on following page). In many people, it can last 10 or more years, while in others, it may be a shorter period of time. During the asymptomatic infection phase, HIV is rapidly making
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HIV THE BASICS
copies of itself (replicating) and infecting new CD4+ cells. Your body is trying to counterbalance this loss of CD4+ cells by creating new, healthy ones. As long as your body can replace those CD4+ cells infected by HIV with healthy ones, your immune system will remain strong. In most cases however, if left untreated, HIV eventually starts to win this battle. The strength of your immune system is measured by your CD4+ cell count (see Chapter 9, Monitoring your health). As the virus overburdens your immune system, your CD4+ cell count drops and you are at increased risk for developing symptoms of HIV infection.
During the asymptomatic infection phase, HIV is rapidly making copies of itself (replicating) and infecting new CD4+ cells. Your body is trying to counterbalance this loss of CD4+ cells by creating new, healthy ones. As long as your body can replace those CD4+ cells infected by HIV with healthy ones, your immune system will remain strong.
These can include swollen lymph nodes, night sweats, fever, diarrhea, weight loss and fatigue. You may develop infections like thrush or persistent vaginal yeast infections. These are all signs that HIV infection is progressing and requires treatment. For more information on infections associated with HIV infection, see Chapter 12 (HIV-related infections and cancers).
PROGRESS OF TYPICAL UNTREATED HIV INFECTION
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AIDS
If your HIV infection is not treated with anti-HIV drugs, you may progress to the stage known as AIDS. Experts have created a list of AIDS-defining illnesses that are used in the diagnosis of AIDS and in statistics to monitor the epidemic. These illnesses are limited to more serious life-threatening infections, including bacterial infections such as Mycobacterium avium complex (MAC), fungal infections such as Pneumocystis pneumonia (PCP) or cancers such as nonHodgkins lymphoma and Kaposis sarcoma (see Chapter 12, HIV-related infections and cancers). For most people, AIDS is an even more frightening and loaded term than HIV. Before effective anti-HIV drugs were available, progressing to AIDS and eventually death was the inevitable outcome of HIV infection for most people. However, with effective anti-HIV drugs, HIV disease can be controlled and does not progress toward life-threatening illnesses. Anti-HIV drugs can slow down or halt the progression toward AIDS in people with HIV who are healthy and it can also help people who have become sick with AIDS-related life-threatening infections to get better and stay healthy. The way that we refer to HIV and AIDS reflects this new reality. Many people now refer to HIV disease or chronic HIV infection, reflecting the fact that AIDS is now a much less common outcome of HIV infection. The terms HIV disease or chronic HIV infection can describe anyone, treated or untreated, at any stage of infection, neatly sidestepping the HIV-versus-AIDS question.
HIV THE BASICS
Many people now refer to HIV disease or chronic HIV infection, reflecting the fact that AIDS is now a much less common outcome of HIV infection.
Resources
Basic Facts about HIV and AIDS Factsheets on the basics of HIV prevention What You Need to Know about HIV and AIDS Online learning module for everyone on the basics of HIV HIV in Canada Factsheets on the HIV epidemic in Canada These and many other relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
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Your healthcare team
Over time, you will work with many different healthcare professionals to help you live well with HIV. This chapter discusses the different players on your healthcare teamdoctors, nurses, pharmacists and other key professionalsand how to maintain a productive and healthy relationship with them. About the author
Evan Collins is a doctor, psychiatrist, researcher, consultant, advocate and person living with HIV.
CONTENTS
Your healthcare professionals Putting together your healthcare team Building a healthy relationship with your doctor
About the author His involvement with HIV/AIDS dates back to 1984
Dr MacPherson is an Assistant Professor of Medicine when he joined the board of the AIDS Committee of and a specialist in the Division of Infectious Diseases at the Toronto. Over the years, he has served on numerous boards and commitOttawa Hospital Campus. His community clinical practice is tees, including the CATIE board General of directors, and was co-chair dedicated to the treatment of patients with HIV for AIDS 2006. primarily He works as a doctor at Hassle Free Clinic in Toronto, as a infection. He appointed to the Deptprogram, of Biochemistry, Microbiology psychiatrist inis aalso community mental health and as a policy and and Immunology at the University of Ottawa and is a Staff Scientist at the organizational development consultant. He currently is President of the Ottawa Research Institute. His research NGO focusdelegate is on underOntario Health HIV Treatment Network and isprimary North American for standing at the molecular level how HIV disables the immune system. the Board of UNAIDS.
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YOUR HEALTHCARE TEAM
Your healthcare professionals

Doctors
Medical doctors, also called physicians, play key roles in the lives of people with HIV. Even if you do not take anti-HIV drugs, you will need a doctor to monitor your health and your HIV infection. It is important that you are treated by a doctor who has experience treating people with HIV. Some people with HIV see a family doctor (general practitioner or GP) who specializes in HIV, and these doctors are sometimes called HIV primary care physicians. Others see a
It is important that you are treated by a doctor who has experience treating people with HIV.
specialist in infectious diseases or immunology who treats their HIV, while their family doctor deals with non-HIV-related problems like colds or flu. In addition, you may have other specialists like cardiologists (heart doctors), dermatologists (skin doctors), gynecologists (doctors who look after womens reproductive health) or obstetricians (doctors who care for pregnant women) for problems that may or may not be associated with HIV. You might see these doctors in a private office, clinic or hospital, by consultation or on an on-going basis. You may also see other doctors on a one-time or short-term basis, such as in an emergency room, walk-in clinic or a sexual and reproductive health clinic. This will especially be the case if you live in a community where it is hard to find a family doctor. Whichever combination of doctors you have, ensure you give them permission to communicate with each other to allow them to work together in your best interest. If you are seeing different doctors at different times, it is good to know some of your own medical details. This could include: details of your past medical history, such as surgeries, hospital stays, significant illnesses and any history of illnesses in your family; any allergies you have; results of any medical tests you have had, such as blood tests; all the medications you take, including prescription and non-prescription drugs, herbs and supplements. Sometimes it is good to keep this written down in your own personal health record (see page 317) and carry it with you to appointments.
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Your personal health record

Its a good idea to keep all of your health information together in one place. A personal health record makes it easier to keep track of your prescriptions and appointments, to collect and review your various test results and look for trends over time. You can record information in case of an emergency, a list of your healthcare providers, your allergies and the questions you want to raise with the various members of your healthcare team. See page 317 for a sample personal health record. Feel free to use it as a starting point and adapt it to your needs.
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To avoid unexpected interactions among your drugs, its best to get them all from a single drugstore, especially if you are filling prescriptions from more than one doctor.
Nurses and nurse practitioners

Nurses play a vital role in your health care. The nurse at a clinic or hospital can often provide the information, counselling or practical assistance like filling out forms that the doctor may be too busy to do well. Some clinics also have nurse practitioners. They are specially trained nurses who can diagnose and treat many diseases on their own.
Pharmacists
Pharmacists dispense prescription drugs from a drugstore (pharmacy). They keep careful records and can help you keep track of your drugs, avoid allergies or interactions between drugs, and provide useful information on taking your drugs regularly without any missed doses. To avoid unexpected interactions among your drugs, its best to get them all from a single drugstore, especially if you are filling prescriptions from more than one doctor. Because pharmacists are generally more available than doctors, many people with HIV rely on their pharmacists for information about HIV and their treatment. Pharmacists are also experts on getting your drugs paid for by government programs and insurance companies.
Dentists
Unfortunately, there are a lot of dental problems related to HIV disease and the drugs used to treat it. It is important that you have a good dentist who is
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knowledgeable about HIV and knows that you have HIV. If you dont have dental coverage though a health plan, some public health departments and university dentistry programs have clinics that provide free dental services. Many people dislike going to the dentist, but good dental health is extremely important for people living with HIV. Try to take good care of your teeth by brushing and flossing and seeing a dentist regularly.
Rehabilitation therapists
Physiotherapists, occupational therapists and other rehabilitation therapists play
It is important to have a good dentist who is knowledgeable about HIV and knows that you have HIV.
important roles in the management of many chronic diseases, including HIV (see Chapter 14, HIV and rehabilitation).
Nutritionists and dietitians

Healthy eating is vitally important when living with HIV, not only to maintain your immune system but to prevent or treat many side effects of anti-HIV drugs. Nutritionists, dieticians and therapists who give advice about vitamins and supplements can be an important part of your healthcare team (see Chapters 4, Healthy living, 5, Complementary and alternative therapies, and 13, Hospital stays).
Social workers and case managers

Social workers and case managers are professionals who work in clinics, hospitals and many community organizations. They can help in arranging benefits, housing and other forms of practical assistance. They know the health and social service systems and can help you navigate them to get what you need. They often do counselling and psychotherapy as well.
Community health representatives

Community health representatives are healthcare workers who are mainly located in First Nations and Inuit communities. They are employed by the Band Council or regional health board. The role of the community health representatives will vary depending on the availability of other healthcare workers and how close the community is to a hospital. Generally, community health representatives provide health information, counselling and first aid. They also make referrals
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and appointments, dispense some prescription drugs, provide advocacy and advise on government policy and programs. Not all community health representatives will have the same level of knowledge of HIV or be comfortable with HIV-related issues. In some areas Aboriginal health workers, wellness facilitators or community health workers may carry out similar work to community health representatives.
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Mental health professionals

Doctors, nurses and social workers often help to support your mental and emotional health. Sometimes, you may need the services of more specialized mental health professionals such as psychologists, psychiatrists, counsellors and others. They can provide individual or group therapy for emotional problems (see Chapter 6, Your emotional health).
Sometimes, you may need the services of more specialized mental health professionals such as psychologists, psychiatrists, counsellors and others.
Complementary and alternative therapists

There are many different types of complementary and alternative therapists who can offer non-drug therapies to help support your immune system, treat symptoms of HIV disease, or help your body deal with the side effects of antiHIV drugs. These therapists include elders and traditional healers working in Aboriginal communities and they can play important roles in your health care. They are often outside of the formal healthcare system, so make sure these therapists know about your other healthcare providers and treatment plans, and vice versa (see Chapter 5, Complementary and alternative therapies).
Administrative staff
The administrative staff (receptionists, secretaries and office managers) at your clinic, hospital or doctors office are also an important part of your healthcare team. They control access to your healthcare providers and are often the power behind the throne. In addition to getting you appointments, they may be able to arrange many of the other things you need, such as prescription renewals, forms and referrals, without your having to see the doctor. These people are often taken for granted, but it is often in your best interest to treat them well.
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Community support workers

Community agencies such as AIDS service organizations can also be a valuable part of your support and care team. Most AIDS service organizations provide a range of support services for people with HIV, ranging from information and counselling to practical supports like food banks. Check with your local AIDS service organization(s) to see what services may be available. Many other support services may be available in your area as well; AIDS service organization staff can often help you find services you might not know about.
Your local AIDS service organization is a good place to start when putting together your healthcare team.
Putting together your healthcare team

Your local AIDS service organization is a good place to start when putting together your healthcare team. The staff and volunteers there can help you locate a doctor with experience treating people with HIV. They can tell you about other services for people with HIV that you may need and they can help you to meet other people with HIV through support groups and social events. They can also provide you with advice, support and tips on how to live well with HIV. To get in touch with an AIDS service organization close to you, you can contact CATIEs free HIV information phone line at 1-800-263-1638 or go to our website, www.catie.ca. As a person living with HIV, you will probably see many healthcare providers for different reasons at various points in time. You can play an important role to ensure that there is good communication among all the members of your healthcare team by sharing information. Keep your personal health record (see page 317) up to date and take it to all your appointments to help you in this co-ordinating role.
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How to get on famously with your doctor

Your doctors appointment lasts about 15 minutes. Thats not a long time! Here are eight great tips for making the most of those 900 precious seconds. Use the personal health record on page 317 to help you get yourself organized. Jot down symptoms and side effects, including any changes in your bowel movements. These are clues for better diagnosis and treatment. Make a note of anything going on in your life thats affecting your health. Have all official information and cards ready: your insurance or health card and your pharmacys name and number. Keep a list of all the drugs youre taking (including over-the-counter ones) and all the anti-HIV drugs youve ever taken. Also keep track of which doses of your anti-HIV drugs youve missed. Adherence difficulties are nothing to feel guilty about, so let your doctor know. Tell your doctor about any alternative or complementary treatments (herbs, vitamins, supplements) youre on. You may want to be prepared for some scepticism, but this isnt about his or her endorsement. Its an update. And its important in order to check for any possible interactions between your medications and supplements. Keep a to-do list to check with your doctor: What prescriptions are you running low on? What lab tests do you need? What appointments do you have coming up? Do you need referrals (acupuncturist, therapist, herbalist, etc.)? Bring clippings about possible new drugs or treatment strategies to discuss. Bring something to read. Theyre always running late.
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As a person living with HIV, you will probably see many healthcare providers for different reasons.
Adapted from POZ magazine: Special Edition, Fall 2000.
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Building a healthy relationship with your doctor

A relationship with your doctor is like any relationship: it has its ups and downs and effort is required to make it work. This section discusses what you can do to build healthy and productive relationships, not just with your doctor but with all your healthcare providers. You need to find a doctor who can help you manage your HIV disease someone you can work with over a long period of time. Some of the things that
A relationship with your doctor is like any relationship: it has its ups and downs and effort is required to make it work.
experienced people living with HIV say they value in their doctors include: someone who is knowledgeable about HIV through training and experience, who has other HIV-positive patients in his or her practice, and who keeps up with new developments; a doctor who is respectful and caring and who is as interested in you as a person as he or she is in your lab results; someone who will be accepting of your lifestyle, with whom you can be open and honest. Your doctor should run an efficient office. You should be able to schedule an appointment within a reasonable amount of time, not have to wait too long in the waiting room, have long enough appointment times to adequately deal with all your concerns, and feel that your privacy is respected. These are things that you can reasonably expect from a doctor. But what should your doctor be able to expect from you, the patient? Some of the things that experienced HIV doctors say they value in their patients include: keeping your appointments and being on time for them. If you need to cancel, do so with sufficient notice; preparing a list of your questions and things you need done in advance of your appointment; being open and honest around issues relating to your lifestyle, substance use, drug adherence, alternative treatments and anything else relevant to your health. You may risk a judgmental response, but hopefully over time you and your doctor will develop a level of mutual respect. It is better for the management of your HIV if your doctor has all the information.
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HIV Patients Bill of Rights

You have the right to be treated with dignity and respect. You have the right to hope. You have the right to ask questions. You have the right to honesty. You have the right to a second opinion. You have the right to confidentiality. You have the right to up-to-date and balanced information. You have the right to refuse any therapy. You have the right to have all tests and treatments done with your full informed consent. You have the right to your doctors full attention. You have the right to get important information in person.
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If you have questions that require a lot of time to answer, try calling the telephone educators at CATIE or talking with a counsellor at your local AIDS service organization.
To work well with your doctor, try to keep up to date about HIV and related issues. Resources from CATIE and other AIDS service organizations can provide the information you need to become an informed patient and an active partner in your health care. You can take advantage of the Internet, fact sheets, articles, newsletters and books like Managing your health, and there are often lectures and workshops on HIV issues you can attend. While your doctor can be a good resource for some of this information, often he or she is working under time constraints. So, if you have questions that require time to answer, try calling the telephone educators at CATIE or talking with a counsellor at your local AIDS service organization. This type of homework can help to make your time with your doctor more productive. But take your time, proceed at a pace that is comfortable for you and dont overload yourself with information. If your doctor is not meeting your needs, there is certainly nothing wrong with firing your doctor and finding a new one. Most doctors have a thick enough skin that they wont be offended if you transfer your care to someone else. Of course, this is a luxury only people living with HIV in larger cities can
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afford. In many places, it is hard to find a doctor taking new patients, let alone someone who is knowledgeable about HIV and has the right personal qualities. Even if youve found the right doctor who meets your needs and you are working well together, as with any relationship, there will inevitably be the occasional disagreement or disappointment. If you and your doctor do not see eye to eye on some issues, it is not the end of the world. Whats important is that you continue a dialogue over a number of visits and sometimes agree to disagree. Even in the face of conflict, try to communicate in a spirit of mutual respect. All doctors are regulated by professional colleges or territorial medical regulatory authorities in the province or territory in which they practice. In the rare event that your doctors conduct is unprofessional, you can make a complaint through the appropriate college or territorial medical regulatory authority. The same situation holds for other healthcare professionals, all of whom have national or provincial regulating bodies. Like any relationship, although it takes effort to make it work, it is worth it in the end.
Resources
The Positive Side Health and wellness magazine containing articles about working with different healthcare providers, such as: Patients are from Venus, doctors are from Mars Top nine reasons to call your doctor right away The pharmacist list Look under Health Care Access in the e-zine index (www.positiveside.ca)
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4
Healthy living
Sometimes living with HIV can make you feel like things are out of your control. But there are many things you can do to feel healthier and better about living with HIV. One of the best ways to cope with itother than taking anti-HIV drugsis to work toward achieving a healthy, happy and relaxed you. Like the old saying goes: Living well is the best revenge! This chapter focuses on proactive strategies, options and ideas to help you get and stay healthy, reduce harm and take control of your personal well-being. Finding the right balance for your body and lifestyle can make living well with HIV a reality. About the author
Alex McClelland has been involved in many Canadian and international civil society organizations and NGOs working toward and advocating for the support, care and rights of people living with HIV. Alex has been living with HIV since he was 19 years old and for five years he coordinated Positive Youth Outreach, a peer support program for young people living with HIV in Toronto. Alex has since continued to work toward the HIV response with such organisations as the AIDS 2006 XVI International AIDS Conference, the Canadian AIDS Society, UNAIDS, the World AIDS Campaign and the Global Network of People Living with HIV/AIDS.
CONTENTS
Eating well Getting the vitamins and minerals your body needs Exercise Coping with stress Tattoos and piercings Harm reduction as a tool to healthy living
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Eating well
Eating a balanced diet based on fresh and unprocessed foods is essential for health and will help your body cope with HIV infection. So what does eating well actually mean? To help you understand how to make healthy food choices, Canadas Food Guide recommends that you eat the following servings daily from each food group: at least seven servings of vegetables and fruits six to eight servings of grain products
Eating a balanced diet based on fresh and unprocessed foods is essential for health and will help your body cope with HIV infection.
two to three servings of milk products and alternatives two to three servings of meat products and alternatives At first, this may seem like a lot of food! However, you only need one piece of bread or half a cup of cooked rice to make up one serving of grain products. Similarly, half a cup of fresh, frozen or canned vegetables or half a cup of fruit juice is all you need to make up one serving of vegetables or fruits. One serving of meats or alternatives can mean two eggs, two tablespoons of peanut or nut butters or just half a cup of cooked meat or fish. A word of caution: Canadas Food Guide points the way to good nutrition for all Canadians, but it may not take adequately into account particular foods that you are accustomed to eating, especially if you are from an ethnocultural community. And it doesnt take into account special dietary considerations that you may have as a person living with HIV. This may be particularly true if you are on anti-HIV drugs or dealing with other medical conditions or complications.
Maintaining a healthy weight can be a challenge. Some people with HIV find it hard to keep enough weight on. Others tend to gain weightoften in the unhealthy form of fat.
Talk to your doctor, nutritionist, naturopath, dietician, nurse or other healthcare provider if you have questions or concerns related to food and nutrition.
Maintaining a healthy weight

Maintaining a healthy weight can be a challenge. Some people with HIV find it hard to keep enough weight on. Others tend to gain weightoften in the unhealthy form of fat. Fat redistribution as a side effect of some anti-HIV drugs makes this issue even more complicated. You deserve to look and feel your best, but you also need to make sure you are getting all the nutrition you need. Look for healthy ways to lose or gain weight. Any weight-loss diet that places too much emphasis on a small range
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of foods, or deprives you of vital nutrients is a no-no! Likewise, if you are trying to gain weight you should include a wide range of foods in your diet, and avoid saturated and trans fats. In most cases, attention to your diet should be combined with an exercise routine. Discuss any weight loss or weight gain plans with your doctor, dietician, nutritionist, naturopath, nurse or other healthcare provider.
HEALTHY LIVING
Carbohydrates, fats and proteins

Carbohydrates, fats and proteins are the building blocks of a nutritious diet. They are also needed to give your body the energy it needs to carry out daily tasks. Calories are the common measure of the energy in various foods. Learning more about the number of calories in different foods will help you understand how much food energy your body needs each day depending on your age, weight, gender and other factors. Carbohydrates or carbs are a primary source of healthy food energy and should be eaten with every meal. There are two kinds of carbohydrates: simple carbs and complex carbs. Complex carbs include whole grains, beans and peas, vegetables and fruits. These foods are considered healthy because they take some time for your body to process, raising your blood sugar (or glucose) levels gradually and giving you a steady source of energy. Complex carbs also tend to be great sources of fibre, vitamins and minerals. Simple carbs include sugars, fruit juices and white starchy foods such as white rice and white bread. Found in most processed foods, simple carbs raise your blood sugar rapidly and give you instant energy. This rapid rise is followed by a dramatic drop in blood sugar that can leave you feeling drained. Unlike complex carbs, simple carbs are usually not a good source of nutrients, vitamins, minerals or fibre. As much as possible, you should try to eat complex carbs and limit your intake of simple carbs. Some easy ways to include complex carbs in your diet include replacing white rice with brown rice, white bread with whole wheat and using grain or spinach pastas. We have all heard bad things about fats over the years. But in fact, fats are a vital part of your diet because they provide the most concentrated form of
Carbohydrates or carbs are a primary source of healthy food energy and should be eaten with every meal.
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energy that is available from food. There are different kinds of fats, some that are healthy and some that are not, especially for some people with HIV. Make sure your diet contains the healthy type of fats. Unsaturated fats, monounsaturated fatty acids and omega-3 fatty acids are all good for heart health. These types of fats come mainly from plant sources. They can be found in olive oil, canola oil, flax oil, nuts and avocados. Salmon is also an excellent source of omega-3 fatty acids. Saturated and trans fats are not good for the health of your heart because they can clog your veins and arteries and raise your risk of heart disease.
Make sure your diet contains the healthy type of fats. Unsaturated fats, monounsaturated fatty acids and omega-3 fatty acids are all good for heart health.
Avoiding saturated and trans fats is particularly important for people with HIV who are taking anti-HIV drugs, which may increase their levels of cholesterol. Saturated fats are found mainly in animal fats and dairy fats and should only be eaten in very small amounts. Trans fats are found in processed fast foods and snack foods. They are also known as partially hydrogenated oils. Most baking shortenings and shortenings used for deep fat frying in restaurants are major sources of trans fats. Since significant health risks have been associated with trans fats, it is recommended that you avoid them completely. Food labels contain important information about what is contained in the foods we eat. Read the fine print on cans, bags and bottles in order to know more about what you are eating. This information will help you to avoid or reduce the amount of saturated fats, trans fats, simple carbohydrates and other things that are not healthy in your diet. When you have HIV, you tend to need a lot of protein in your diet. Protein helps your body to produce hormones, enzymes, cell structures and parts of the immune system. Protein also helps build and maintain lean muscle mass. Proteins are found in all meats, fish and shellfish, eggs, legumes (beans and
When you have HIV, you tend to need a lot of protein in your diet.
peas), peanut and nut butters, nuts and seeds, milk products, including cheese and yoghurt, and soy products such as tofu and soy milk. It is important to note that certain medical conditions, such as kidney disease, can be made worse if you eat too much protein, so be sure to talk with your doctor or nutritionist about his or her recommendations for the amount of protein you should be eating.
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Food safety
HIV disease makes your body more susceptible to disease-causing bacteria found in food or water. In the years before effective anti-HIV drugs, many people living with HIV experienced life-threatening illnesses caused by contaminated food and water. Though serious illnesses are less of a problem if you are taking anti-HIV drugs, it is still very important to observe safe food preparation rules: make sure that your hands and the surfaces that you are preparing the food on are clean; ensure that meat and seafood are thoroughly cooked; carefully peel or wash fruits and vegetables; avoid foods that are past their best before dates or are spoiled; keep raw meat, poultry and seafood separate from ready-to-eat foods, such as fruits or salads, and keep raw meat, poultry and seafood separate from cooked foods. This includes paying attention that you dont reuse your cutting board for ready-to-eat foods after it has been used for raw meat or seafood; dont let food sit out at room temperature for long if it is prone to spoiling. Keep hot things hot and cold things cold; pay attention to warnings about food contamination. You have better control over these things if you are preparing your meals at home. When you are dining out, it may be better to avoid raw or undercooked foods, especially fish, poultry and meats.
HEALTHY LIVING
HIV disease makes your body more susceptible to disease-causing bacteria found in food or water.
Some anti-HIV drugs are meant to be taken without food. Its important to know about these special food instructions so your anti-HIV drugs work as well as they can.
Food and anti-HIV drugs

Some foods interact with anti-HIV drugs. This means certain foods can change the way that your body absorbs the drugs that you are taking. This can result in your having either too much drug in your bloodstream, which could lead to side effects, or too little, which could lead to the development of drug resistance (see Chapter 10, Treatments). Make sure to ask your doctor or pharmacist about any special food considerations for each anti-HIV drug you are prescribed. Also,
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ask whether or not you are supposed to take your drugs with food. In some cases, eating at the same time that you take your drugs could cut down on certain side effects, such as upset stomach. But some anti-HIV drugs are meant to be taken without food. Its important to know about special food instructions so your anti-HIV drugs work as well as they can.
Getting the vitamins and minerals your body needs

A healthy diet should provide all the vitamins and minerals your body needs. However, due to digestive problems, many people living with HIV have a difficult time absorbing nutrients from their food. This means that your body may lack
Many people living with HIV have a difficult time absorbing nutrients from their food. This means your body may lack certain vitamins and minerals that help it function well. Taking a daily multivitamin is highly recommended.
certain vitamins and minerals that help it to function well.
Vitamin and mineral supplements

HIV disease and some of the side effects of anti-HIV drugs can make it hard to absorb vitamins and minerals from your food so taking a daily multivitamin is highly recommended. Your doctor, nutritionist or naturopath can determine if your diet is not providing you with adequate vitamins and minerals. If this is the case, supplementing your diet with vitamins and minerals is a good idea. Talk to your doctor, nutritionist, naturopath, nurse, dietician or other healthcare provider about the value of supplements in HIV. Be sure to choose supplements that match your bodys needs and that dont interact with your other drugs. Vitamin and mineral supplements can be costly because, for the most part, they are not covered by health plans. Some AIDS service organizations provide limited funds so that people with HIV can buy supplements, or they may have bottles of supplements available for their clients. In larger cities, some health food or supplement stores offer a discount to people with HIV.
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Eat your veggies! Chicken soup

This soup is a great way to use up leftovers. Bring some chicken broth (you can buy this in cartons, cans or cubes, or you can make your own) to a boil in a large pot. Add a wide variety of colourful vegetables, fresh and frozen: corn, green or yellow beans, peas, cabbage, broccoli, onions, spinach, kale, Swiss chard, bok choi, carrots, potatoes the list is almost endless. If they dont give you problems with gas, pre-cooked or canned beans such as lentils, kidney beans or chick peas can be added to increase the protein in this soup. You can also add some leftover chicken pieces and a few spoonfuls of olive oil to really boost the taste and the nutritional value. Salt, pepper and other herbs like parsley, cilantro, oregano or basil can be added to taste. From start to finish, this soup shouldnt take more than 15 minutes to make. If you are vegetarian, you can modify this recipe by starting with a vegetable broth and omitting the chicken. You could add cheese or tofu to boost the protein content and some sesame oil to give it a hearty flavour. Croutons, parmesan cheese, nuts or whole grain crackers can top off this nutritious soup. Make a big pot and freeze some of it for a day when you feel too tired to cook but want to feed your body and soul!
HEALTHY LIVING
Some AIDS service organizations provide limited funds so that people with HIV can purchase supplements, or they may have bottles of supplements available for their clients.
Adapted from Lark Lands KISS Chicken Veggie Soup, The Positive Side, Spring/Summer 2004.
Antioxidants
Made naturally by the body, antioxidants are also found in some foods and supplements. Antioxidants are important because they neutralize molecules called free radicals inside your body. Free radicals start a process called oxidation which damages healthy cells in the body. HIV can intensify this process of cell damage. Antioxidants protect against cell damage.
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Foods that are rich in antioxidants include blueberries, red peppers and spinach, as well as black and green tea, red wine and dark chocolate. You can also find antioxidants in supplements including vitamin C and E supplements, co-enzyme Q10, selenium, zinc, alpha-lipoic acid and N-acetyl cysteine (NAC).
B vitamins
B vitamins are great for increasing your energy. B vitamins are found in potatoes, bananas, lentils, liver, turkey and tuna, among other things. If your diet is not providing you with enough B vitamins, you might consider supplementing
Many of us in Canada experience harsh winters where we do not get as much sun as we would like or as much as our body needs to make vitamin D.
with vitamin B1, B2 and B3. Low levels of vitamin B12 are associated with anemia, low energy and the inability to think clearly. Your doctor can check your levels and, if they are low, you can get a B12 injection from your doctor, which provides B12 in a way that your body can use that is better than oral or liquid B12 formulations.
Vitamin C
Vitamin C is one of the best antioxidants available. If you feel that you are not getting enough vitamin C in your diet through fruits and vegetables, such as citrus fruit, broccoli, parsley and red peppers, you may consider supplementing with vitamin C. In high doses, vitamin C can cause diarrhea.
Vitamin D
Vitamin D helps our bodies to use calcium properly and has many other functions as well. Our skin makes its own vitamin D when exposed to the sun. However, many of us in Canada experience harsh winters, where we do not get as much sun as we would like or as much as our body needs to make vitamin D. Since it is difficult to get vitamin D from food, many common foods such as milk, bread and margarine have vitamin D added to them.
Vitamin E
Vitamin E is another great antioxidant. It is found in such foods as avocados, nuts and seeds, leafy green vegetables and vegetable oils such as canola, corn or sunflower. High doses of vitamin E may increase your risk of heart disease, so dont overdo it if you are supplementing with vitamin E.
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Calcium
Calcium is essential for healthy bones. It is found in dairy products such as milk, cheese or yoghurt. Certain anti-HIV drugs can affect your bone health, leading to thinning bones. People who are older, especially menopausal women and people with thinning bones, should especially ensure that they have sufficient calcium intake. If you are concerned that you are not getting adequate calcium from your diet, consider calcium supplements. Some people find calcium supplements can be constipating. A small amount of magnesium can ease this effect.
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A diet low in iron, which is often the case with the typical North American diet, can make you prone to infection.
Iron
Iron plays an important role in supporting your immune system. A diet low in iron, which is often the case with the typical North American diet, can make you prone to infection. It is important for people with HIV to ensure they are getting enough iron, which is found in meats, dried peas and beans, some cereals and some fruits and vegetables. You should only take an iron supplement if it is prescribed by your doctor or nutritionist.
Selenium
Selenium is an essential micronutrient and plays a role in how the thyroid gland works. It is found in foods such as nuts (especially Brazil nuts), cereal, meat, fish and eggs.
Zinc
Zinc is important for the health of your immune system. Foods that contain zinc include most meats, poultry and shellfish. If you are a vegetarian, a great source of zinc is pumpkin seeds, as well as milk and cheese, beans and brown rice.
Other supplements for people with HIV

Other supplements which may benefit people living with HIV include: alpha-lipoic acid; carnitine;
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N-acetyl cysteine (NAC); L-glutamine; probiotics; coenzyme Q10. To get more information on these supplements and the role they play in your health, check out CATIEs A Practical Guide to Nutrition for People Living with HIV.
Rainbow Fruit Smoothie

Put a sliced, ripe banana in the blender. Since colour is where the nutrients are, add a whole rainbow of fresh or frozen fruits to your blender till it is about three-quarters full. Add orange juicefresh squeezed, if possibleto the level of the fruit. Blend the mixture till it
Not only is a strong body better equipped to fight HIV, but achieving a level of physical fitness can help you fight stress.
is smooth, then add a couple of spoonfuls of plain yoghurt and blend a little longer. This is a delicious way to start your day! There are lots of variations to this basic recipe. You can add cranberry juice concentrate, frozen mango pure, pomegranate juice or some grated ginger. Ginger and pomegranate boost the anti-oxidant, antiinflammatory and cancer-protecting nutrients in the smoothie. If you need extra calories in your diet, add coconut milk in place of some of the juices. If you need extra protein, add a little protein powder. Experiment and make this basic smoothie your own.
Adapted from Lark Lands KISS Fruit Shake, The Positive Side, Spring/Summer 2004.
Exercise
Many people living with HIV find that exercise helps their overall health and wellbeing. Not only is a strong body better equipped to fight HIV, but achieving a level of physical fitness can help you fight stress. Physical fitness is also important
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because it reduces your risk of depression, and people living with HIV have high rates of depression. Last but not least, exercise will help you maintain your ideal body weight in the form of muscle rather than fat. Running, walking fast, biking, skating, swimming and other similar aerobic activities all promote a healthy body. Be careful though! You dont want to overdo an exercise plan, especially when you are just starting out. Check with your doctor before you start in a workout program and consider meeting with a personal trainer who can demonstrate how to get the most from your workout. Exercise can also be a part of a rehabilitation program. For more information about exercise in the context of rehabilitation (see Chapter 14, HIV and rehabilitation).
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On the move
Exercise can lead to: more energy; less stress; an improved mental outlook; improved heart capacity and lung function; sound sleep; more regular bowel function; enhanced self-image and self-esteem.
To put on weight that will stay on, you need to lift weights and increase the amount of protein and complex (healthy) carbs in your diet.
Building lean muscle

Gaining weight and building lean muscle mass can be especially important if you have experienced rapid weight loss with HIV disease. To put on weight that will stay on, you need to lift weights and increase the amount of protein and complex (healthy) carbs in your diet. Eating high-fat foods is not the answer! For weight training, use machines at a gym, free weights or do push-ups, sit-ups, and squats, which use your own body weight to build muscle.
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Training tips
When working out, dont forget to: breathe; wear comfortable clothing; drink lots of water before, during and after you exercise; include a warm-up and cool-down period as a component of your workout; listen to your body; eat a nutritious, well-balanced diet with adequate calories and protein to fuel your body; give yourself a break, such as days off between workouts, to let your body recover.
Make time in your life for the things you love to do.
Coping with stress

Finding time for yourself is an effective stress buster, so make time in your life for the things you love to do. Go dancing, cook a healthy meal, bake bread, go for a walk in the park or woods, go swimming, listen to music, or do some gardening. And of course, spend time with the people you love. There are other ways to deal with stress: Learn more about meditation and relaxation breathing techniques Take a course or buy or download meditation guides. Most naturopaths will have more information for you. Start taking yoga or Tai Chi Check for free or pay-what-you-can yoga classes at yoga studios, community centres or AIDS service organizations. Get a massage If you work, the cost of massage may be partially or completely covered through your insurance plan. Massage may also be available free at your local AIDS service organization. Some massage schools offer free or pay-what-you-can massages from their students. Take breaks This includes small breaks such as having a nap or taking a sick day from work or school, as well as longer breaks such going out of town for a vacation.
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Tips to help you de-stress

Drink lots of water Our bodies are made up of 75 per cent to 90 per cent water, and water flushes out toxins from the body and keeps us hydrated. Try to drink at least eight glasses of water a day. Eat fresh fruits and greens, whole grains and soy products Try juicing fruits and vegetables, which is a great way to get lots of nutrition from fresh foods. Think of how good your body feels when you feed it a fresh, colourful salad and compare that to how you feel when you eat over-processed and overcooked food. Avoid the centre aisles in your grocery store as much as possible because this is where most processed foods are located. Slow down, savour the moment Be mindful and present. Rest and relax. Get a massage to boost your bodys circulation and immune system. Trust yourself Listen to your inner voice. Keep a journal. Dare to fulfill a dream. Put out a wish or prayer and dont be surprised if you get what you ask for. Remember to give thanks. Rejoice Celebrate by doing one of your favourite activities or discovering a new one. Learn how to knit. Join a choir. Try salsa dancing or African drumming. Exercise Get your heart pumping and blood circulating. And dont forget to breathe! Walk, swim, dance, cycle pick your favourite. Not only will it benefit you physically, it will also lift your spirits. Sex counts as exercise! Speak sweetly to yourself Your words to yourself can either heal or harm you. Speak and think positive thoughts. Respect yourself and your contribution. Each of us is unique and holds different gifts and perspectives. Seek out help Use your local AIDS service organization. They may have resources or programs that make your life easier. Opportunities may exist that you are unaware of. Connect with others. If you live in a remote area, reach out by e-mail, on the Web or use toll-free numbers. Communicating with other people with similar issues is an invaluable resource of support and information. Accept support from family and friends. Celebrate your relationships.
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Tattoos and piercings

People with HIV can get tattoos and piercings. But if you are considering getting a tattoo or piercing, be aware that if the instruments used are not sterilized or disinfected, the risk of hepatitis B or C transmission to you does exist. As well, reused or unsterilized equipment can transmit HIV. Single-use, disposable needles and ink cups should be used. Any reusable instruments or devices that penetrate the skin and/or come in contact with blood should be thoroughly cleaned and sterilized between uses. Look for a clean, hygienic shop, with staff who can speak knowledgeably about what procedures they use to prevent the transmission of blood-borne infections. In prisons, tattoos are a part of the subculture, where prisoners who are tattoo artists create their equipment from available materials. Because this equipment is reused and not sterile, it can easily transmit blood-borne infections from one person to another. Prisoners and their advocates are attempting to promote safe tattooing projects within prisons to protect both prisoners' and public health.
Harm reduction as a tool to healthy living

You may find it strange that information about drug use and harm reduction is in a chapter about healthy living. But people with HIV may be at very different places with regards to healthy living practices and decisions. Some of us are risk-takers and party people, while others prefer calm pursuits that keep us close to home. Some of us are people who have always prioritized our health and cared for our bodies, while some of us have learned how to do this in a way that suits our character and temperament over time. Any commitment to healthy living with HIV, no matter how big or small, begins with where we are at now in our lives.
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Drugs, drug use and harm reduction

The terms drug and drug use have specific meanings in this section of the book. They do not refer to the drugs used to treat HIV as in the rest of Managing your health. Instead they refer here to a wide range of substances and activities, from the occasional use of drugs for pleasure or fun through to dependence and addiction. When we refer to drugs in this section we are including substances that are often referred to as party drugs, street drugs or recreational drugs. The term harm reduction refers to an approach to drug use that provides options or choices to help you live as healthily as possible, even if you are using drugs. Drug use can put you at risk for many health problems. But you can take steps to reduce those risks. Drugs can include stimulants or uppers, like cocaine and methamphetamines, depressants or downers, like methadone or oxycontin, and hallucinogens, like LSD. Drugs can be smoked, as in the case of cigarettes, marijuana or crack. They can be swallowed, as with ecstasy or oxycontin. They can be drunk, as in the case of alcohol or methadone. They can also be snorted as with cocaine or injected as in the case of heroin.
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Reasons for using drugs

People have different reasons for using (or not using) drugs. Some people use drugs recreationally, which means that they take drugs or alcohol in social situations or on special occasions for fun. Some experience problems associated with drug use, such as loss of inhibition, hangovers, blackouts with memory loss and overdoses. Some people become addicted to drugs. Drugs can be used as a coping mechanism. Some people use drugs to help deal with problems such as emotional pain, anxiety, stress or low selfesteem. Drugs may help to cover up these problems, but they interfere with figuring out ways to deal with the underlying issues. In these cases, drug use can become a problem.
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Maintaining a balance
Many people are able to keep a balance between their drug use and the other things in their lives. However, this balance can be hard to maintain. In some cases, getting and using drugs becomes a main focus of our lives. In these cases, drugs become more important than our friendships and our interests, and we may find ourselves doing things we dont really like doing in order to get drugs: spending too much money on them, missing work, borrowing money and not paying it back, exchanging sex for drugs. This is a sign that drug use has changed to dependence or addiction. Drug dependence is very complex and can involve physical, psychological and emotional changes, where you dont have control over the drugs youre takingthey have control over you. If you think that youre having problems like this, there are ways to take back control: cutting back, taking a break, switching the amount or type of drug youre taking or trying addiction treatment. You can get help to explore your optionstalk to a doctor or healthcare provider that you trust.
One way that drugs can affect us is by lowering our inhibitions.
Loss of inhibition
Inhibitions are the little warning bells in our heads that go off telling us were about to do something dangerous or risky. One way that drugs can affect us is by lowering our inhibitions. For example, cocaine can lower your inhibitions by making you feel confident and almost invincible, so you dont have to listen to the warning bells. Alcohol can suppress the part of our brain that holds the warning bells and make it easier to take risks. Crystal meth can increase your sex drive to the point where nothing seems more important than having sex. Lowered inhibitions make it more likely that you will have unsafe sex, including having sex without using a condom, or with people or in places you normally wouldnt. As a person with HIV, this not only puts you at greater risk of passing on HIV to other people, but can also put you at risk for becoming infected with a sexually transmitted infection or a strain of HIV thats already resistant to some anti-HIV drugs.
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Stimulants, depressants and hallucinogens

There are generally three types of drugsstimulants, depressants and hallucinogensand they are classified based on the general effects they have on the body.
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Stimulants
Stimulant drugs speed up the body and body processes and are sometimes called uppers. They can increase heart rate, breathing rate, energy, sex drive, confidence and sometimes aggression. Stimulants include caffeine (in coffee), guarana and taurine (in energy drinks), nicotine (in cigarettes), cocaine (coke and crack) and methamphetamines (speed, crystal meth and ecstasy).
Depressants
Depressant drugs cause body processes to slow down and some are painkillers. Depressant effects include slower heart rate, slower breathing rate, reduced pain, feeling calm or relaxed and sometimes even unconsciousness. They are called downers or downs and this category of drugs includes alcohol, opiates (heroin, methadone and oxycontin), GHB (G) and ketamine (K).
Hallucinogens
As the name suggests, these types of drugs can cause hallucinations and change the way we perceive the world, with effects ranging from mild to severe. Some of these common effects include paranoia, hearing voices, seeing things or making us think we can do impossible or dangerous things without getting hurt. Examples of hallucinogens include magic mushrooms and LSD.
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Interactions between anti-HIV drugs and recreational drugs

Recreational drugs have unpredictable interactions when combined. This increases the possibility of overdose or of an effect that you did not plan for, such as getting too high when you mix alcohol with hallucinogens or getting an erection that lasts for too long when mixing crystal meth with erectile dysfunction drugs. The interactions between anti-HIV drugs and various recreational drugs are also not well defined. Anti-HIV drugs often increase the activity of recreational drugs in the bodythis means that you need less of the recreational drug to get the same effect when youre also taking anti-HIV drugs along with it. In some cases, as with methadone and ddI (Videx) or d4T (Zerit), an interaction can occur that makes your anti-HIV drugs less effective, leading to the possibility of drug resistance. You may experience symptoms of withdrawal if you mix nevirapine (Viramune), efavirenz (Sustiva, and also found in the combination pill Atripla), abacavir (Ziagen, and also found in the combination pill Trizivir) or darunavir (Prezista) with methadone. It is best to talk openly and honestly with your doctor about possible interactions between your anti-HIV drugs and the substances that you take.
Alcohol
Having a few drinks once in a while is one way that many of us relieve stress and socialize. But excessive alcohol consumption can be dangerous. It can deplete important vitamins and minerals from your body. It can also be very hard on your liver. Too much alcohol can lead you to make errors in judgment, and since sex and alcohol often go together, alcohol can lead you to make choices you may regret, like not having safer sex and not telling your sex partners about your HIV status. Alcohol is also a well-known depressant and depression is an issue with which many people with HIV struggle. Proceed with caution when it comes to alcohol and if you feel that alcohol is affecting your decision making and your quality of life, speak to your doctor about ways that you can regain control of your alcohol use.
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Cigarettes
Smoking tobacco has been shown to lead to heart disease and cancer and can make breathing-related conditions, such as asthma and emphysema, much worse. The nicotine in cigarettes is highly addictive. If you smoke, quitting may be one of the single best things you can do for your health and well-being. Many strategies can be found to help cut back or quit altogether, from government-sponsored smoking cessation programs to nicotine substitutes (like gum or the patch) to prescribed medications. Talk to your doctor, naturopath or even friends who have quit to learn more about these options.
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Smoke-free: Things to look forward to

After a few days: Taste and smell improve After a few weeks: Circulation improves After one year: Risk of heart disease is cut by half After a few years: Risk of heart disease is the same as someone who never smoked After 10 years: Risk of lung cancer is cut in half
Marijuana (pot)
Marijuana is the most commonly used recreational drug in Canada. It is a controversial drug, with some people claiming it is a gateway drug to harder substances like crack or heroin and others claiming it has health benefits. For many years, people with chronic disease, like cancer, hepatitis C and even HIV, have used pot to manage treatment side effects and disease symptoms. It can stimulate the appetite and promote weight gain for those of us who are struggling to keep our weight up. It can also help with general pain management, anxiety, stomach upset, sleep and relaxation. Health Canada runs the Marihuana Medical Access Division to allow people with grave or debilitating illnesses access to medical marijuana legally. There are forms that you and your doctor fill out and, if approved, you then have the legal
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right to use marijuana. Many people use buyers clubs or compassion centres as their source of marijuana. Compassion centres sell clean, safe marijuana to anyone with written proof of a relevant medical condition such as HIV. THC, the ingredient in marijuana that is responsible for its medicinal effects, is also available by prescription in a drug called Marinol (dronabinol). Some people use pot recreationally and never suffer any negative consequences. Other people may develop depression from regular use. Smoking pot, like smoking cigarettes, can also increase risk for cancer, so some people choose to consume it by vapourizing or baking with it. If your pot use is causing you to feel depressed or you are experiencing negative consequences from pot, talk to your doctor about strategies for quitting or reducing your pot use.
Crack, crystal meth or cocaine

Using crack, crystal meth or cocaine can put you at risk for a number of healthrelated problems. If you are living with HIV and using these drugs, there are things you can do to maintain your health and to protect the health of those around you. These include: not sharing your filters, straws, pipes, and other drug-use equipment. Talk to workers at your local needle exchange program about safer drug-use equipment; planning ahead so that you have a safe place to use, new equipment, condoms and lube for sex, food and a place to crash; learning how to avoid overdosing and how to detect overdose symptoms in others; if you are taking anti-HIV drugs, taking them regularly to prevent the development of drug resistance; practising safer sex by using condoms for vaginal and anal sex. In addition to protecting the health of your partners, safer sex also protects your health by preventing STIs, re-infection with HIV and other infections; getting tested and, if necessary, treated for TB (tuberculosis) and hepatitis A, B and C; getting vaccinated annually against the flu and getting a hepatitis A and B vaccination.
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Basic harm reduction strategies that you can put in place for yourself include eating regularly, drinking lots of fluids and getting enough sleep. Try to set yourself limits on how much and how often you use and stick to these limits as much as possible. If you are feeling like your use of these drugs is getting out of your control and negatively impacting your life, you might consider discussing this with your doctor or a healthcare worker. They can provide you with information on harm reduction strategies such as drug substitution (replacing your drug of choice with something less harmful, such as methadone instead of heroin). If you are having trouble taking your anti-HIV drugs as prescribed and you are missing doses, talk to your doctor or a healthcare worker. They can help you to come up with strategies to help you remember to take your anti-HIV drugs, or they may be able to prescribe a combination that is easier for you to take regularly.
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Injection drugs
If you are HIV-positive and inject drugsheroin, crack, crystal, cocaine, pills or steroidsyou can take steps to stay healthy, even if you dont want to or cant quit. Its important to know that every time you inject a hit, you make a direct, open path to your bloodstream. This makes it easy for you to get other viruses such as hepatitis B and C, which, like HIV, are passed on through infected blood. All the drug equipment you useneedles, syringes, rigs, spoons, cookers, filters, watercan spread these viruses. To avoid transmitting HIV, or getting and transmitting hepatitis B and C and other infections, its important to shoot safely. Use a brand-new clean needle/syringe/rig every time you shoot. Try not to share needles, syringes or any other drug use equipment filters, spoons, cookers, water, ties, pipes. When shooting with others, make sure you have your own needles, syringes and other equipment. Mark yours so you can tell them apart. Talk to the workers at your local needle exchange program about safer injection practices and how to prevent abscesses and other infections. Before you shoot, clean your hands and the injection site. This will help keep germs from getting into your bloodstream.
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Use a different injection site (rotate) each time you shootit helps save veins. Go back to sites youve already used only after theyve healed. Try to avoid dangerous injection sites on your body: groin, thighs, breasts, wrists, neck. After you shoot, recap the needle and put it in a sealed puncture-proof container like a soft drink bottle so nobody can use it again. Bring it to a needle exchange or give it to an outreach worker. If there is no needle exchange near you, put the needle in a sealed container and throw it in the garbage. Do not dump it where someone could find it and get hurt. Injection drug use has a negative impact on your overall health, and as a person with HIV you need to be especially careful to keep yourself and the people around you as healthy as possible. Some things that you can do to reduce the harms that are associated with injection drug use include: when you know that you are going to be using drugs, plan ahead and get a safe place to use, new equipment, condoms and lube for sex, some food and a place to crash; talk to the workers at the needle exchange program to find out what you can do to avoid overdosing, how you can recognize overdose symptoms in others and what to do if someone is overdosing; get vaccinated annually for the flu and ask your doctor for a hepatitis A and B vaccination; get tested, and (if necessary and advisable) get treated for TB (tuberculosis) and hepatitis A, B and C. If you are feeling that your use of injection drugs is getting out of your control and negatively impacting your life, you might consider discussing this with your doctor or a healthcare worker. They can provide you with information on harm reduction strategies such as drug substitution that doesnt have to be injected (replacing your drug of choice with something less harmful, such as methadone instead of heroin) or on treatment for your dependency on injection drugs. Though it may not be your first priority, it is important to make time to deal with your HIV infection. Many services that support injection drug users also provide support, care and referrals related to living with HIV. You should consider: talking with your doctor or healthcare worker about taking anti-HIV drugs;
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if you are taking anti-HIV drugs, try to make sure that you take them regularly to prevent the development of drug resistance; if you are having problems taking your anti-HIV drugs regularly, talk to your doctor or healthcare worker. They may be able to help you to come up with solutions to the challenges you are experiencing; practice safer sex by using condoms for vaginal and anal sex. In addition to protecting the health of your partners, safer sex also protects your health by preventing sexually transmitted infections, re-infection with HIV and other infections. To find a needle exchange program near you, where you can get new syringes and other drug use equipment for free, call your public health department or local AIDS service organization. Needle exchange programs also offer information and support about harm reduction and drug use.
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Resources
The Positive Side Health and wellness magazine containing articles about health living, such as: 10 commandments for living strong and well with HIV Lets get physical Conquer the kitchen How to find the joy in everyday life Look under Health and Well-Being in the e-zine index (www.positiveside.ca) A Practical Guide to Nutrition for People Living with HIV Comprehensive book covering healthy eating, vitamins and supplements, managing symptoms and side effects through nutrition and more Canadas Food Guide (www.healthcanada.gc.ca/foodguide) Canadian Food Inspection Agency This federal government agency, responsible for food safety in Canada, posts up-to-date information on contaminated food products (www.inspection.gc.ca)
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Pre*fix : Harm reduction for + users Booklet about maintaining health and well being for people who use injection drugs and their care providers (www.catie.ca) Street Drugs and HIV Article from Relay magazine on street drugs (relaymagazine.com) Cannabis and HIV Information sheets by the Canadian AIDS Society on the medicinal use of marijuana (www.cdnaids.ca) Medical Use of Marijuana Information on Health Canadas system for accessing medicinal marijuana (www.hc-sc.gc.ca/dhp-mps/marihuana/index-eng.php) Living Positive Magazine Magazine, from the British Columbia Persons with AIDS Society, providing informative, current information on a broad range of HIV/AIDS topics (www.bcpwa.org)
Most of these and many other relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
NOTES
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Complementary and alternative therapies

Complementary and alternative medicine is a very broad term that covers many different approaches to health and healing. It usually refers to any kind of therapy that lies outside the standard western medical model. Many people with HIV use complementary and alternative medicine along with western medical treatments, in order to get the benefits of both. This chapter will touch on many of the major systems and strategies of complementary and alternative medicine, but its by no means a comprehensive list. You can refer to the Resources section for more detailed information about complementary therapies that you are interested in.
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CONTENTS
What is complementary and alternative medicine? Some examples of complementary and alternative therapies How to access and pay for complementary and alternative therapies Putting it all together: a personal perspective
About the author

Devan Nambiar has been working in the HIV sector for 15 years and is actively involved in the HIV community regionally, nationally and internationally. He specializes in allopathic and complementary health care and has been actively studying and researching ethno-botanicals and indigenous medicines for their efficacy and use with anti-HIV drugs. He is also involved in research in ethnoracial communities Devan was presented with the Honour Roll Award of the Ontario AIDS Network in 2002, and in 2006 he was the recipient of the Canadian AIDS Society Leadership Award. Devan worked at CATIE for nine years as a treatment educator, and now works as a consultant with his own company, Global Health Integrative Systems.
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What is complementary and alternative medicine?

Complementary and alternative medicine (often called CAM) is a very broad term that covers many different approaches to health and healing. In Canada, complementary and alternative medicine usually refers to any therapy outside the standard western medical model. Complementary and alternative medicine is also known by many names, such as alternative medicine, complementary therapies, integrative medicine or holistic medicine. These terms reflect the way
Complementary and alternative medicine usually emphasizes the importance of linking the various dimensions of an individual, including the mental, physical, emotional, sexual and spiritual.
many people living with HIV use complementary and alternative medicines not as an alternative that rejects the benefits of western medicine, but as something that works with western medicine to provide them with the benefits of both. Complementary and alternative medicine usually emphasizes the importance of linking the various dimensions of an individual, including the mental, physical, emotional, sexual and spiritual. Complementary and alternative medicine attempts to heal on various levels, and explore root causes instead of just dealing with symptoms. There are many complementary and alternative therapies that may help you improve and maintain your quality of life, repair immune damage or treat symptoms. Complementary and alternative medicine takes time to bring successful results. It involves making daily effort to improve dietary intake, exercising often, practising meditation, etc. Complementary and alternative medicine is not a quick fix for ailing health.
A word of caution
Be wary of claims that any therapy or treatment can cure AIDS, or reverse HIV status from positive to negative. Inform yourself by researching the therapy and talking with other people with HIV who have used the therapy or treatment youre interested in. Contact your nearest AIDS service organization, or call CATIE at 1-800-263-1638 if you have questions.
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Some examples of complementary and alternative therapies

There are many different therapies and practices that are included under the term complementary and alternative medicine. Below is an alphabetical list of some of the therapies that people with HIV may benefit from. It is by no means a complete list, but it gives a sampling of some wellness strategies and approaches you may want to explore. Some of these strategies may become part of your personal health plan, and the practitioners who offer them may become members of your health team. For more information about these and other therapies, see CATIEs A Practical Guide to Complementary Therapies for People Living with HIV and A Practical Guide to Herbal Therapies for People Living with HIV.
Many people with HIV believe that having a positive attitude is an important part of survival and healing.
Affirmations and visualization (also called guided imagery)

Many people with HIV believe that having a positive attitude is an important part of survival and healing. An affirmation is a statement of something you want to happen, declared in the present tense. Some examples of positive affirmations are: I am strong and healthy or I love myself. Visualization or guided imagery is one way of developing positive thinking that is popular with people who have life-threatening illnesses. It involves imagining your body and your life as healthy and well. Usually, a group leader guides the process of the visualization with spoken instructions. Alternatively, you can use audiotapes or CDs that lead you through the visualization process.
Aromatherapy
Aromatherapy is a branch of herbal medicine that uses the medicinal properties found in the oils of various plants. The oils are extracted from the flowers, leaves, branches or roots. The oils can be breathed in directly, added to bathwater, or warmed to produce an aroma. Aromatherapy can enhance a guided visualization or a massage.
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Ayurvedic medicine
Ayurvedic medicine is a medical system that comes from India and is more than 5,000 years old. It is the oldest recorded medical system. In Sanskrit, ayur means life and veda means knowledge or science, so Ayurveda means the science of life. Ayurvedic medicine uses natural healing methods like nutrition, herbs, exercise, massage, yoga and meditation to bring your body to a healthy state.
Medicinal herbs are used by many people in many cultures around the globe.
Herbal medicine
The first medicines ever used were derived from plants. Medicinal herbs are used by many people in many cultures around the globe. Herbal medicine is also known as botanical medicine. Herbal medicines are used by herbalists, doctors of Chinese medicine, naturopaths, homeopaths, aromatherapists and Ayurvedic doctors. If youre thinking about taking herbal treatments, its useful to consult one of these healthcare professionals to find out which herbs are best for you and what dosages would be effective and safe. Practitioners experienced in treating HIV-positive people may also be able to warn you of possible interactions with prescription drugs you are taking. Its wise to find out about possible interactions before starting an herbal treatment. Some herbs sold as immune boosters may be harmful to people with HIV. Some immune-boosting herbs may stimulate parts of your immune system that are already overactive while weakening other parts. Ask a naturopath or herbalist, or do your own reading to find out how various herbs may be helpful for you.
Homeopathy
Homeopathy is a system of medicine that began in Europe about 200 years ago. It is based on the principle that like cures like. This means that your symptoms are treated with small doses of a medicine that would cause those symptoms if a full dose were given.
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Massage and touch therapies

There are many types of massage and touch therapies. Some involve light superficial touch and some massages go deep into tissue. Massage and touch therapies relieve stress and give you a sense of well-being. They can relax your body and may improve the circulation of your blood and other body fluids. Massage therapists sometimes use oils, aromatherapy and/or lotions. Specific types of massage and touch therapies often used by people with HIV include reflexology, therapeutic touch, reiki, shiatsu, Trager, Bowen technique, osteopathy and chiropractic.
Massage and touch therapies relieve stress and give you a sense of well-being.
Meditation
Meditation is an exercise of the mind in which you learn to become an observer of your thoughts. It is a simple practice, but it takes great discipline. Meditation can give you a sense of calm, peace, joy and efficiency in everyday life.
Mind/body medicine
Stress and anxiety can negatively affect your immune function and health. Mind/body medicine is based on the idea that the health of the mind affects the health of the body. It covers a number of health practices that focus on reducing stress, creating a sense of wellness and fostering spiritual and emotional connectedness to ones surroundings.
North American Aboriginal healing traditions

The Aboriginal peoples of Canada include First Nations, Inuit/Innu and Mtis. All of these peoples have different healing traditions, but share many common ideas, beliefs and images. These include: sharing and healing circles, traditional ceremonies, elders, traditional medicines, feasts and gatherings. Aboriginal healing traditions attempt to balance the four parts of the person: the physical, mental, emotional and spiritual. It is believed that illness is not necessarily a bad thing, but is rather a sign sent by the Creator in order to help people re-evaluate their lives. There are two practices often used by Aboriginal people with HIV. In smudges, four sacred herbs are burned in a cleansing and purifying ritual.
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In sweat lodges, heated stones are placed in a pit in a small, enclosed structure, water is poured on them, and the steam cleanses and purifies the participants.
Naturopathy
The word naturopathy comes from Greek and means a natural way to relieve suffering. Naturopathic practitioners, called naturopaths, see symptoms as your bodys attempt to restore balance. They use a holistic approach to healing that can include herbal medicine, nutrition, supplements, homeopathy, traditional Chinese medicine, chiropractic (spinal manipulation), massage and counselling.
Traditional Chinese medicine sees illness as an imbalance in your bodys energy flow.
Tai Chi
Tai Chi is a form of Chinese martial art involving a series of slow, rhythmic movements. This relaxing exercise tones your muscles, improves your posture, breathing and circulation, and increases your energy, strength and stamina.
Traditional Chinese medicine

Traditional Chinese medicine is a complete, integrated system of healing. Traditional Chinese medicine sees illness as an imbalance in your bodys energy flow. This energy, known as chi or qi, moves along invisible pathways in your body called meridians. Meridians connect your bodys organ systems to each other and to pressure points. Techniques for Traditional Chinese medicine include acupuncture, herbs, exercises such as Tai Chi and qi gong, and nutrition to bring the body to a healthy state.
Yoga
Yoga uses deep breathing, stretching, the holding of postures, meditation techniques and a diet of pure foods to establish a balance between body and mind and give you better control of your muscle systems, including your digestive system. Many people living with HIV report improved quality of life, more energy and less fatigue with regular yoga practice.
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How to access and pay for complementary and alternative therapies

Most complementary and alternative therapies listed in this chapter are not paid for by government drug coverage plans. However, some private health insurance benefits packages, such as those you may have through your employer, cover some of these therapies. Review your policy or speak to the person in charge of human resources where you work. Otherwise, you will need to pay for these therapies yourself. Many complementary and alternative medicines, as well as herbs, are available from health food or supplement stores, and sometimes from drugstores. Other sources include Chinese herbalists and some practitioners. Options for people in smaller communities where these products are not readily available include specialized mail-order services and buyers clubs. Your local AIDS service organization may have information about how to access complementary and alternative medicines and therapists in your area. Some AIDS service organizations offer a limited range of complementary therapies free to people living with HIV. Some offer a limited fund for people with HIV to cover a portion of their out-of-pocket expenses for complementary and alternative therapies. Many also hold workshops on various complementary and alternative therapies, where you can try out these techniques for free, before spending your money on them. Also check with local complementary and alternative therapists for sliding-scale rates, student rates or barter systems.
Your local AIDS service organization will have information about how to access complementary and alternative medicines and therapists in your area.
Putting it all together: a personal perspective

When you look at the long list of complementary and alternative therapies that can benefit people living with HIV, making choices can seem overwhelming. In this section, I am going to describe how I have incorporated complementary and alternative therapies into my life. This is my personal perspective, and the
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choices I have made do not need to be the ones that you make. What you choose to do depends on your circumstances, your health issues and your personality. But I hope that by sharing my perspective, you will be motivated to look at what complementary and alternative medicine has to offer you. In order to make room for complementary and alternative medicine in your life, its important to create quiet time. If you have a busy life already, you may need to prioritize your activities and possibly give some up in order to create quiet time for yourself. With anti-HIV drugs, your doctor can measure your viral load and CD4+ cell count to see if your drugs are working. But there are not a lot of tests in complementary and alternative medicine to tell you which therapy is better for you than another. The key is to learn to listen to your body and to believe that you can tell what works best for it. It takes time to build a relationship with your body. Even before my HIV diagnosis, my health was a big priority in life. So things that might otherwise seem like a chore have become part of my daily routine. Making my health my priority has created structure in my life. There are particular things that I do in the morning, in the afternoon and in the evening. Other things, I do weekly or seasonally. I like the structure, personally.
A daily routine
I wake early and begin the day by chanting Sanskrit hymns. I take my morning vitamins and micronutrients and anti-HIV drugs. I take a multivitamin, calcium with magnesium, vitamin D3, omega-3 and vitamin B12. Five mornings a week I go to the gym where I do resistance weights to combat bone thinning, which Ive been diagnosed with. I also do yoga. The high of a workout feels good and its a bonus that I like how my body looks, too. If I miss a day at the gym, I dont worry too much about it. At lunch and at dinner I take more vitamins and micronutrients. At lunch, I take coenzyme Q10, vitamin C, zinc, selenium, N-acetyl cysteine, vitamin B complex and vitamin B6. At dinner, I take calcium/magnesium and omega-3 plus my anti-HIV drugs. In the evening, I meditate to Tibetan chants. Im in bed well before midnight and I find my sleep is deep and restorative.
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If I lose focus and dont do these core practices regularly, my body sends me a message. I become easily annoyed and agitated. I dont like how this feels, so I make sure to maintain these practices.
COMPLEMENTARY
Eat healthy
Good nutrition is essential. We know that high levels of HIV are found in the gut, even very early on in HIV disease. This can cause nutritional deficiencies. It doesnt need to cost lots of money to eat well. For breakfast, I eat non-fat organic yoghurt (I love Libert organic yoghurt!) mixed with muesli that I make myself. I buy nuts and seeds at bulk food stores and mix them with fresh or dried fruit. On the weekend, I try to do a juice. For this, you need a juicer. This will cost you about $50 if you buy it new, but I often see them at garage sales. I tend to juice carrots, apples and beets with a slice of ginger. This is great for your kidneys and liver. The beets are good if you are slightly anemic and ginger is good for digestion. I dont eat out much, because I enjoy the food I make for myself. I almost always pack a lunch and take it to work. I feel its important to make good choices about the food you put into your body, but this doesnt mean you cant splurge every once in a while. Whats life without cheesecake or dark chocolate? When you shop for groceries, read the labels. Ask yourself if there is a healthier substitute.
AND ALTERNATIVE THERAPIES
Take time for yourself

Every few weeks I do a gastrointestinal cleanse using psyllium husks and a quality apple cider vinegar. Yes, it tastes awful! I also use a neti pot, which you can purchase at a health food store, to flush out my sinus passages regularly. This is a great little tool if you smoke or have frequent colds or sinus infections. Every Friday night, I take my ritual soak in the tub, with a lit candle and a few drops of essential oils. Your very own spa for minimal cost! I take Ayurvedic herbs on a seasonal basis, get a massage monthly and see my Traditional Chinese doctor every two months.
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Two practices that I am really enjoying right now are my electric massage chair and some new Holosync meditation tapes, which claim to work with your brain wave patterns. These tape takes me into a deep meditative state, often lulling me to sleep, but they are creating neural pathways in the brain that help me cope with stress. Both the chair and the tapes cost a bit of money, but I feel they they are worth it. I think of them as a long-term investment in my health.
Newly diagnosed?
Ive been doing these kinds of health practices for many years now. For a newbie to the world of HIV who wants to start a healthier lifestyle, I think that selecting a quality multivitamin and adopting an exercise program that really gets your heart pumping are good places to start. Of course, speak to your doctor first before starting an exercise program. The cost of complementary and alternative therapies is an issue, but there are lots of very simple, inexpensive things that you can do for yourself. Look at your budget and see what you can afford. AIDS service organizations are good places to look for assistance when you are first starting out. Your local AIDS service organization may have a volunteer massage therapist on site, or they may have a fund to help you cover the costs of some of these therapies. Buy vitamins on sale and stock up. Start with a multivitamin once a day. I feel that taking selenium, N-acetyl cysteine and omega-3 oils are also important for people with HIV.
The next stages

After a few months, think about adding vitamin C, zinc and any other micronutrients that you can afford. The beauty of vitamins and micronutrients is if you miss a dose or stop taking them, it is perfectly fine. Try to buy good quality products. I would also recommend reading CATIEs fact sheets and practical guides on nutrition, multivitamins and micronutrients. Knowledge is power but if it is not put into action, it is useless. The best part of complementary and alternative medicine is having sex! Yes, getting laid is a boost to the immune system! Let your imagination guide
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you. If you are in a relationship, spice up your love life. If youre single, take a chance and go on a date, fall in love.
Set yourself a goal

The point of these therapies isnt to make life more complicated than it needs to be. I feel that if you set yourself a goal, whether its to have more energy, or to put on more muscle, or to be less stressed, and then you work toward it, youll be successful. Little baby steps are the way to start. Conduct a scan of your life. Determine what you want to add, delete or enhance. Make a list of ten things you want to do for your health. This list could include things as simple as taking a half hour walk daily, or a multivitamin daily or soaking in the tub once a week. From this list, pick two of the easiest and get started! Every six months or so, add one or two more things from this list. If you have doubts, assume failure is impossible. Give yourself a good reason to wake up every morning. Take joy in learning new things for your body, mind and spirit. Expand your mind. If you have access to the Internet, there is so much you can learn online for free. Most important of all, do not be defined by HIV. You are so much more then the sum total of your HIV serostatus, viral load and CD4+ cell count!
Resources
Practical Guides for People Living with HIV CATIEs practical guide series contains extensive information about complementary and alternative medicine. See: A Practical Guide to Complementary Therapies for People Living with HIV A Practical Guide to Herbal Therapies for People Living with HIV A Practical Guide to Nutrition for People Living with HIV A Practical Guide to Managing HIV Drug Side Effects The Positive Side Health and wellness magazine contains articles about complementary therapies, such as: The role of naturopathic medicine in HIV
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Sensual aromatherapy Introduction to Yoga In-te-grate Look under Complementary and Alternative Therapies in the e-zine index (www.positiveside.ca) Plain and Simple Factsheets on Complementary Therapies Available in multiple languages In-Depth Factsheets on supplements Comprehensive information for people living with HIV and their care providers
These and many other relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www. orders.catie.ca) or by calling CATIE at 1-800-263-1638.
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Your emotional health
There is a connection between the mind and body. While most people understand that living with HIV can be stressful, they dont always realize that emotions can affect your body and your physical health, making it more difficult to fight off HIV. This chapter explores your emotional and mental health, its relationship with your physical health, and the importance of paying attention to your emotional health when you're living with HIV. About the author
Evan Collins is a doctor, psychiatrist, researcher, consultant, advocate and person living with HIV. His involvement with HIV/AIDS dates back to 1984 when he joined the board of the AIDS Committee of Toronto. Over the years, he has served on numerous boards and committees, including the CATIE board of directors, and was community co-chair for AIDS 2006. He works as a doctor at Hassle Free Clinic in Toronto, as a psychiatrist in a community mental health program, and as a policy and organizational development consultant. He currently is President of the Ontario HIV Treatment Network and is North American NGO delegate for the Board of UNAIDS.
CONTENTS
Self-esteem Stress Anxiety Depression Drug and alcohol abuse Seeking emotional support Seeking professional help
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YOUR EMOTIONAL HEALTH
Self-Esteem
Self-esteem is a term that describes how good or bad we feel about ourselves. It is important because many emotional problems have their roots in poor selfesteem. After an HIV diagnosis, self-esteem can be affected if people with HIV continue to blame themselves or others for becoming infected. Even after many years of living with HIV, poor self-esteem can be reinforced by things like stigma (social disapproval) and discrimination, social isolation or visible changes in your appearance brought on by HIV. Poor self-esteem can make it difficult to
Poor self-esteem can make it difficult to live a healthy and happy life with HIV.
live a healthy and happy life with HIV. Addressing emotional problems often starts with dealing with self-esteem.
Stress
As a person with HIV, experiencing stress is very common. We fear getting sick, worry about infecting others and fear that we will be discriminated against. Even if we try not to think about the fears, the worry can eat away at us and create chronic stress. Our bodies react with tension in our muscles, inability to relax and other physical symptoms. The more constant the stress is, the more it negatively affects our bodies. Some people cope with chronic stress well by seeking support, developing spiritual practices, learning to relax and trying not to worry too much about things they cannot control. Others react to stress poorly by worrying too much or by relying on practices that create more problemslike abusing alcohol and drugs or having unsafe sex. Many studies have shown that the more stress you experience and the more poorly you cope with it, the more it will affect your immune system negatively. If you feel that you are not coping well with stress, there are lots of things you can do. You might consider talking to your doctor or a counsellor at your local AIDS service organization. If you take comfort in your spirituality, you might talk to somebody from your faith community. Sometimes just talking about the stress in our lives can be helpful and put things in perspective. You might join a local support group for people with HIV or a community program in meditation or yoga. Often taking time to be good to ourselves can reduce stress and promote a more positive outlook.
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Some things you can do about stress right now

Breatheconcentrate on taking slow, steady breaths. Find some time every day to watch your breath and slow it down. Relaxtense up each muscle in your body, one at a time, then release it to see how a relaxed muscle feels. Hot baths in sea salts and getting a massage also help to relax muscles. Laughstudies show that laughter reduces stress and boosts the immune system. Watch a silly movie or learn some funny jokes. Appreciate the good thingsthis reinforces a positive attitude. Every day, try to count five different things in your life you are grateful for. Talk about your fearskeeping your fears bottled up makes them worse. Find a friend or a counsellor with whom you can talk about your biggest fears and worries. Learn stress reductionthere are many complementary therapies that teach relaxation and stress reduction. Some community organizations offer free massage, yoga and meditation classes. Live in the here and nowlife with HIV can be all about living in the past with regrets, or in the future with worry about what lies ahead. Find some time every day to forget the past and future and live in the moment.
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Sometimes just talking about the stress in our lives can be helpful and put things in perspective.
Anxiety conditions can be treated effectively with counselling, behavioural therapy or anti-anxiety drugs, but require a professional to diagnose and treat them.
Anxiety
Some people react so poorly to stress that they develop anxiety conditions. These can include panic attacks; phobias (intense fears about specific things like needles, for example); somatization (experiencing physical symptoms that do not have a physical cause); or generalized anxiety disorder (a nervousness that interferes with everything you do). Anxiety conditions can be treated effectively with counselling, behavioural therapy or anti-anxiety drugs, but require professional diagnosis and treatment.
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Depression
Although everyone, with or without HIV, experiences short periods of feeling sad or down, some people develop states of sadness and helplessness they cannot shake. These are often accompanied by low energy, problems in sleeping, eating or concentrating, and even feelings of wanting to commit suicide. These feelings are known as depression. Depression is very common, with more than 40 per cent of people with HIV experiencing episodes of depression at one time or another. Like other emotional problems, depression limits your quality of life and interferes with your immune systems ability to fight HIV. As well, depression can often undermine your ability to care for your health. It may lead to poor anti-HIV drug adherence, drug and alcohol abuse or unsafe sex. The causes of depression may include your genetics and family history, past experiences of loss, social isolation without support of friends and family, or the consequences of prolonged recreational drug use. Depression may also
More than 40 per cent of people with HIV experience episodes of depression at one time or another.
be brought on by some medications like the anti-HIV drug efavirenz (Sustiva, and also in the combination pill Atripla) or interferon treatment for hepatitis C. HIV disease itself can also be a factor in depression. Certain conditions related to advanced HIV disease such as anemia (low red blood cell count), severe fatigue and dementia can cause symptoms that feel very similar to depression. Low energy and feeling helpless are key symptoms of depression that make it hard for people to seek help. However, depression is very treatable and, with the right therapy, you can feel much better. Effective treatment for depression can include individual and group counselling, cognitive behavioural therapy, which alters depressive thinking, and antidepressant drugs.
Drug and alcohol abuse

Some people with HIV use substances like recreational drugs and alcohol to help cope with poor self-esteem, stress, anxiety and depression. Sometimes this use can lead to addiction and becomes an emotional problem itself. This can happen very gradually: often people dont realize that their social drinking or recreational drug use is getting out of hand. Substance abuse can directly
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harm the immune system. It can also interfere with your ability to stay healthy by contributing to poor anti-HIV drug adherence or poor sleep and nutrition. If you or others identify your drug or alcohol use as a problem, there are many resources to help you get it under control. If you are not ready to reduce or abstain, another approach is harm reduction, which tries to lessen the potential harm associated with substance use. Harm reduction techniques like education, distribution of clean drug-use equipment, and promotion of safe sex will help reduce transmission of HIV and hepatitis and other problems associated with drug and alcohol abuse (see Chapter 4, Healthy living).
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If you or others identify your drug or alcohol use
Seeking emotional support

In dealing with any emotional problem, the first step is always admitting you need help. Next comes taking the steps to seek it. Especially after first learning that you are HIV-positive, it can be very easy to become isolated from friends, family and community. Experiences of stigma and discrimination can reinforce this further. Any of the emotional and mental health issues discussed above will be made worse by social isolation and can be helped by seeking support from others. It is helpful to have others to talk to, laugh with, cry with and count on for support and practical assistance.
as a problem, there are many resources to help you get it under control.
Telling others you have HIV (disclosure)

It is important to decide whom you can tell about being HIV-positive. This is called disclosure. To help you decide whom you can tell, ask yourself the following questions: Whom do you feel needs to know? Who will not judge you? Whom can you feel safe with? Who is a good listener? Who will support you unconditionally? Who will respect your privacy and only tell others if you ask them to? Who is sensible, reliable and practical and might be able to help you if they knew?
It is helpful to have others to talk to, laugh with, cry with and count on for support and practical assistance.
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For the most part, you dont have to tell anybody until youre ready, and you dont have to tell everyone at once. You may choose to tell different people for different reasons. It may seem very hard at first, but will become easier the longer you live with HIV. The one exception is that you are obliged by law to disclose your HIV status to former, current and future sexual partners and people with whom you share drug equipment. Sharing this information can be very difficult, but there are counsellors at some HIV testing clinics or with Public Health who can help you plan how to do this, or even do it for you. For more information about disclosure and sexual partners (see Chapter 7, Your sexual
You are a good judge of whom you should tell about your HIV status, so trust your feelings.
health, and Chapter 21, Legal issues). Although you may experience rejection in telling friends, families, co-workers, sexual partners or people you have shared drug equipment with, often the reactions are not as bad as you fear. You are a good judge of whom you should tell about your HIV status, so trust your feelings. Disclosing to children presents special challenges. For more information about disclosing to children, see Chapter 16, Children and HIV. The people you decide to tell may need some accurate information about HIV, including how it is and is not transmitted. This book might be useful for them. Many AIDS service organizations have counsellors who can help you prepare for disclosure to sexual partners, people you have shared drug equipment with, friends, family and co-workers and give you pamphlets you can give to the people you tell.
Start building a network of people you can rely on for companionship and support.
Support from partners, families and friends

Once you decide whom you can safely disclose your HIV status to, you can start building a network of people you can rely on for companionship and support. Obviously, you will count on different people for different things. Some friends or family members are good for socializing with; some are ones you could talk to if you are feeling down. Still others are those you might rely on to accompany you to the doctor or to bring you some soup if you get sick. Like all things, it takes time and hard work to find the people you can rely on and build healthy relationships with.
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Support from the community

Many AIDS service organizations have counsellors who can provide support either individually or in groups, as well as practical assistance in a number of areas. In addition to these support services, organizations often hold social events that allow people with HIV to meet and socialize together. Volunteering for an HIV organization is a great way to meet new people and build friendships among people who are HIV-positive themselves or non-judgmental about HIV. Volunteering also gives people a sense of accomplishment and worth.
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If you need more support
Seeking professional help

If you need more support than friends and family can offer, there are places you can go for professional help. If you are unsure where to start, many communities have telephone hotlines that can direct you. Some of these are HIV-specific, and others deal with mental health problems. Although many of the mental health hotlines are advertised as crisis lines and are intended for people in an emergency, they are often very willing to talk to people who arent in a crisis, but who have questions about where to seek further help for emotional issues.
than friends and family can offer, there are places you can go for professional help.
Doctors
Either your family doctor or your HIV specialist can help you if you tell him or her how you are feeling. Many doctors do counselling themselves, and many HIV specialists work with social workers or counsellors available to people with HIV who have emotional problems. Psychiatrists are doctors with extra training in mental health issues: your doctor might refer you for an assessment and/or treatment if this is required. Psychiatrists are often helpful if your emotional problems are complicated by medical problems or drug side effects.
Many doctors do counselling themselves, and many HIV specialists work with social workers or counsellors available to people with HIV who have emotional problems.
Precription drugs
There are many effective prescription drugs that can treat specific emotional problems like depression and anxiety. Other drugs can be used to treat certain symptoms, like using sedatives for sleep problems. As with any drug, there can
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be side effects and interactions with anti-HIV drugs that need to be managed. If you choose to try prescription drugs for an emotional problem, make sure your doctor understands both HIV and mental health issues.
Counselling and psychotherapy

There are many types of counselling and psychotherapy that are used to help people with specific emotional problems. Some of these are individual (where it is just you with the therapist) and some of them are done in groups (where you and other people are seen together by a therapist). Sometimes they are provided in a private office, and other times in a clinic, hospital or AIDS service organization. The type and setting of service you receive will depend on the problem you need help with, and which services are available in your community. Some of these services are paid for through your provincial or territorial health plan or are free through a community organization. A broader range of services will be available privately if you pay. Often, the cost will be reimbursed by an
No one should face emotional problems alone. There is help available.
employer health plan, or it will be considered a tax-deductible health expense on income taxes (see Chapter 20, Money matters).
Complementary and alternative therapies

Numerous complementary and alternative therapies can help with mental health problems either by treating the underlying problem or relieving symptoms of the problem (such as sleeplessness or stress). Some of these therapies include acupuncture, light therapy and aromatherapy. Some natural health products have been shown to help depression, but one of these, St. Johns wort, will interfere with anti-HIV drugs. Another, called kava kava, can cause liver damage. Make sure your doctor knows what you are taking. See Chapter 5, Complemenary and alternative therapies, for more information. Living with HIV can be as hard emotionally as it is physically and, given the mindbody connection, one affects the other. No one should face emotional problems alone and there is help available.
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Resources
The Positive Side Health and wellness magazine contains articles about emotional health, such as: De-stress yourself Lady sings the blues How does it feel? Look under Health and Well-Being in the e-zine index (www.positiveside.ca)
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Your sexual health

Sexuality and sexual practices are incredibly diverse. Although we may think we know what we mean when we refer to gay sexuality or what straight people do, as often as not we realize that we were thinking in limited or even stereotypical ways. The diversity of sexuality and the variety of sexual practices presents challenges in writing clearly and completely about sexual health and HIV. Hopefully, this chapter meets the challenges of clearly explaining the relationship between HIV disease and sexual health for all people with HIV and their partners, because HIV disease has important consequences for all of us. The chapter covers important information for people living with HIV about what we can do to ensure that our sexual lives are as healthy and as fulfilling as possible.
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CONTENTS
What is sexual health? About safer sex Preventing and treating sexually transmitted infections in both partners Sexual dysfunction
About the author

John Maxwell is a manager at AIDS Committee of Toronto (ACT). He has been working in the communitybased HIV movement for more than 15 years. He has extensive experience in the area of HIV prevention/sexual health promotion, and has been an active participant in many communitybased research projects. In addition to his work at ACT, he is a member of numerous local, provincial, national and international HIV working groups. In 2007, John was honoured at the Canadian Association for HIV Research conference with the Red Ribbon Award, which was presented to him for outstanding service to the cause of research in Canada that will lead to increased understanding of the treatment and prevention of HIV/AIDS, while enhancing the quality of life for those living with this disease.
Relationship issues
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YOUR SEXUAL HEALTH
What is sexual health?

Taking care of your health includes taking steps to ensure that your sex life is as healthy as possible. Sexual health means more than the absence of sexually transmitted infections, or the absence of other medical conditions that might prevent you from having a fulfilling sex life. Sexual health is not just the lack of such ailments or conditions, but the presence of a satisfying, respectful and beneficial sexual part of your life. To be sexually healthy means enjoying a fulfilling and respectful approach
To be sexually healthy means enjoying a fulfilling and respectful approach to sexuality and sexual relationships.
to sexuality and sexual relationships. Signs of sexual health include the ability to have pleasurable and safe sexual experiences that are consensual and free from discrimination and violence. To achieve and maintain sexual health, the sexual rights of all persons must be protected, respected and fulfilled. But in the context of HIV, its important to think about more than just your own individual sexual health. Since sex is, for the most part, a social act that takes place between or among people, your own sexual health is inescapably linked to the sexual health of your partners. The idea that you need to be thinking about yourself and your partner(s) may seem obvious at first, but not thinking this idea through can put you in situations of risk for transmission of HIV. A note about language: this chapter has been written so that the information
Because having safer sex reducesbut does not entirely preventthe possibility of transmitting HIV or a sexually transmitted infection, safer sex is always about the negotiation of risk between you and your partners.
contained in it is applicable to all people with HIV: men, women and trans people, gay, lesbian and straight.
About safer sex

A very important aspect of sexual health is the ability to have safer sex. For people with HIV, safer sex involves learning and practising behaviours that reduce the chances of transmitting HIV or other sexually transmitted infections (as well as hepatitis A, B and C and parasites) to our partners and reduce the chances we will get re-infected with HIV or get a sexually transmitted infection from them. Because having safer sex reducesbut does not entirely preventthe possibility of transmitting HIV or a sexually transmitted infection, safer sex is
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always about the negotiation of risk between you and your partners. You try to negotiate risk or arrive at an agreement between the level of risk that is acceptable to you and the level of risk that is acceptable to your partner. The Canadian AIDS Society publication HIV Transmission: Guidelines for Assessing Risk is an excellent starting point to learn about safer sex. This publication is available online at the CATIE ordering centre. However, we are learning a lot about other factors that affect our risk for getting or transmitting HIVthings like co-infections, the presence of other sexually transmitted infections, the health of our mucous membranes, even our age. With this knowledge, questions (as yet unanswered) continue to emerge about the complex relationship between sexual health, safer sex and HIV.
YOUR SEXUAL HEALTH
We are learning a lot about other factors that affect our risk for getting or transmitting HIV things like co-infections, the presence of other sexually transmitted infections, the health of our mucous membranes, even our age.
Using condoms for intercourse

If youre having intercourse (meaning putting a penis into a vagina or an anus), it is very important always to use a latex condom. Polyurethane (plastic) condoms protect against HIV, sexually transmitted infections and pregnancy, but break more easily than latex ones. Natural (lambskin) condoms do not provide protection against HIV. It doesnt matter whether your penis is going inside someone else or his penis is entering you. HIV and other sexually transmitted infections go both ways. Use a water-based lubricant (lube) with condoms. There are many brands available. Some AIDS service organizations provide free packages of lube as well as condoms. Never use oil-based skin lotions, cooking oil, Vaseline, Crisco, butter or anything oily as these can cause condoms to break. Drugs used to treat problems in your anus or vagina, such as suppositories for fungal infections or creams for hemorrhoids, can also damage condoms. All condom packages should carry an expiry date. Throw them away if the date has passed. Never store condoms in direct sunlight or in places that are very hot or cold. Condoms for men should be placed on the penis before starting intercourse or penetration. HIV can be transmitted through pre-cum and vaginal and anal secretions at any time during intercourse. Put a drop of lube inside the tip of the condom before you put it on. Place the condom on the penis with the tip
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sticking out. Squeeze the tip so that there are no air bubbles in it. Unroll the condom to the base of the penis. If youre having anal sex (putting a penis in a partners anus), make sure the condom is always slicked up with lots of waterbased lube. If you want to be really careful, use an extra-strong condom. If one partner is allergic to latex, use both a natural (lambskin) condom and a latex one, keeping the natural one next to the skin of the allergic person. You can also use a polyurethane condom instead of a natural condom. When youre finished having sex, take the condom off while the penis is still hard. Hold the open end of the condom while the penis comes out to prevent any semen (cum) from leaking out. Throw the condom out. Never use a condom more than once. Never use latex condoms that are lubricated with nonoxynol-9 (a spermicide), as this can cause irritation, increasing the risk of HIV transmission. Women who have sex with men can protect themselves from pregnancy with contraceptives (birth control pills, spermicides, for example), but until recently had no way of protecting themselves against sexually transmitted infections and HIV except by convincing their sexual partners to wear condoms. A condom for women (made of polyurethane, and sometimes called a female condom) is available, and it gives women another option for protection. Its shaped like a large condom and has two flexible rings, one on the top and one on the bottom (where its open). The top ring is inserted into your vagina and covers your cervix (much like a diaphragm). The bottom ring remains outside your vagina. It can be inserted minutes or hours before intercourse. Never douche before or after anal or vaginal intercourse (even if the condom breaks). Douching may irritate your mucous membranes (the skin lining your vagina or rectum) and increase the risk of HIV transmission. There is evidence that people with HIV may be at increased risk for getting infected with the hepatitis C virus if they have unprotected sex. Although the exact way this happens is unknown, co-infection with HIV and the hepatitis C virus is a very serious health situation.
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MALE REPRODUCTIVE SYSTEM
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FEMALE REPRODUCTIVE SYSTEM
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Oral sex
Oral sex (contact between the mouth and genitals) without using a latex barrier is considered a low-risk activity for HIV transmission. If you are HIV-positive and you perform oral sex on your partner, the chances of your transmitting HIV to your partner are extremely low. If your partner is performing oral sex on you, it is considered low risk. This means that HIV transmission can happen, but the chances are much smaller than the risks associated with anal or vaginal intercourse without a condom. The main risk in oral sex is getting or passing on sexually transmitted infections other than HIV, as well as hepatitis and parasites. The risk of HIV transmission increases, however, if your partner has cuts or sores on or inside the mouth. The same is true if your partners gums bleed. If you want to have oral sex as safely as possible, you or your partner should put a condom on the penis or cover the labia (the outer lips of the vulva) or anus with a dental dam (one of the little rubber squares that your dentist uses) or plastic wrap (use the non-microwaveable kind). Or, instead of a dental dam, use a condom in the following way: first cut the top off, then cut the condom lengthwise and open it up. Safer sex guidelines suggest using a nonlubricated condom for oral sex. If you dont use a condom, dental dam or plastic wrap for oral sex, neither you nor your partner should perform oral sex for at least two hours after brushing or flossing your teeth, since brushing or flossing can cause tiny cuts in the lining of your mouth. If you or your partner smoke or have nutritional problems, your gums can take up to two hours to heal after these activities.
Sex toys
Dildoes and other sex toys can be a fun part of safer sex. You just have to make sure that you keep them clean and dont share them with sexual partners. Wash them with soap and water before and after you use them. Better yet, use warm water and a little bit of bleach and then rinse them really well. Or, if you dont want to bother with all that, use condoms on your toys, or wrap them in non-microwaveable plastic wrap. Dont use your sex toy in one persons body and then put it into someone elses without changing the condom or plastic. Ideally, everyone should have his or her own set of toys that are never used
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inside anyone else. Everyone living with HIV, and people with the bleeding disorder hemophilia, in particular, should be cautious of anything going into the body that might lead to heavy bleeding. You can get more information on safer sex and sexually transmitted infections from your nearest AIDS service organization or public health office. You (or you and your partner or partners) may also want to talk about sex with a counsellor. Counsellors are available at many AIDS service organizations.
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Whats safe and sexy?

You and your partners can have sex that is safein other words, where there is no possibility of transmitting or getting HIVas long as the sexual activities that you engage in do not involve any contact with blood or sexual fluids. Learning how to bring yourself and your partner to orgasm through masturbation is very safe and very sexy. You can masturbate together while reading or looking at porn, you can have phone and cyber sex, you can tell each other your sexual fantasies while masturbating, you can have or give an erotic massage, as long as no sexual fluids are exchanged. Perhaps Tantric sex, which views sex as a path to greater self-awareness without concentrating on orgasm as the goal, has something to offer you. If your definition of abstinence includes having great sex alone, try out porn and experiment with sex toys to please yourself. Womenfocussed sex stores can be found in some cities and they often offer workshops in masturbation for women who want to learn more about self-pleasure.
You can get more information on safer sex and sexually transmitted infections from your nearest AIDS service organization or public health office.
Safer sex when both of you are HIV-positive

Some HIV-positive people choose not to use condoms with other HIV-positive sexual partners. However, there are still risks that go with unprotected sex, even between HIV-positive people. So, while you may still choose to make this decision, it has to be made with some care.
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First of all, its important to be certain your sexual partners are also HIVpositive before deciding not to use condoms. People may make assumptions about each others HIV status that could be wrong. Dont assume you know your partners status; find out for sure. All of the sexually transmitted infections we will talk about later in this chapter can be passed between HIV-positive people. In fact, people with HIV may be more vulnerable to getting infected with sexually transmitted infections. Hepatitis C can also be transmitted through unprotected sex. Even HIV itself can sometimes be passed on from one HIV-positive person
Dont assume you know your partners status; find out for sure.
to another. (This is called reinfection or superinfection.) You may wonder, whats the problem with getting HIV if you already have it? The danger lies in the fact that not all HIV is the same. Its possible to be reinfected with a strain that could make you sicker than the one you already have, or one thats resistant to the anti-HIV drugs youre taking.
Safer sex and disclosing your HIV status

Sometimes people are afraid to talk about (or disclose) their HIV status or the issue of safer sex because of how other people may react. This fear can make
When thinking about disclosing your HIV status to sexual partners, there are many factors to consider.
a lot of sense, especially if youre worried about rejection or violence. Discussing your HIV status with someone youre planning to have sex with is very different from telling a healthcare provider or a support worker. When thinking about disclosing your HIV status to sexual partners, there are many factors to consider. Do you tell someone as soon as you meet him or her, or do you wait until you are going to have sex? Does it make a difference whether this is a one-night stand or an ongoing relationship? What if sex work is how you make your living? There have been an increasing number of legal cases in which people who knew they were HIV-positive have been taken to court for placing another person at risk for HIV infection through unsafe sex. Some people have been charged even though they disclosed that they were HIV-positive before having unsafe sex. If you need advice on how to get your partner(s) to have safer sex, or if you have fears about your relationship(s), safety or legal issues, contact someone at your nearest AIDS service organization. For more information
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about disclosure of your HIV status (see Chapter 6, Your emotional health, Chapter 8, Positive prevention, and Chapter 21, Legal issues).
Building on the foundation of safer sex

In addition to practising safer sex, there are other strategies that you can use to reduce the risk of transmitting HIV to your partners and to keep yourself healthy. However, we dont know how effective these strategies are yet. They include keeping your viral load as low as possible through effective anti-HIV treatment and adherence, and making efforts to prevent and treat sexually transmitted infections in both you and your partner(s). Your viral load is a measure of the amount of HIV in your blood (see Chapter 9, Monitoring your health). Many people wonder if having a low or undetectable viral load makes them less infectious. This isnt necessarily the case. Thats because virus is always present in your body, even if levels in your blood are too low to measure. And, even if viral load levels in your blood are undetectable, levels of HIV may be higher in other body fluids like semen or vaginal or rectal fluids. Research into the different biological factors (such as viral load, the presence of genital sores, the presence of sexually transmitted infections and type of intercourse) that affect the risk of HIV transmission during sex is ongoing. The picture that appears to be emerging is that HIV risk is changeable. Over the course of time, people with HIV may experience periods of heightened infectivity, while at other times their infectivity may be quite low. Likewise, susceptibility of people who are HIV-negative can vary over time. Having a better understanding of how HIV is transmitted can help us make decisions about safer sex. Unfortunately, we dont yet know all of the factors involved in accurately predicting transmission risk.
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Even if viral load levels in your blood are undetectable, levels of HIV may be higher in other body fluids like semen or vaginal or rectal fluids.
We dont yet know all of the factors involved in accurately predicting transmission risk.
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Preventing and treating sexually transmitted infections in both partners

A sexually transmitted infection is an infection that can be transferred from one person to another through sexual contact. Sexual contact is more than just vaginal or anal sexual intercourse. Sexual contact also includes oral sex and the use of sex toys such as vibrators. HIV is considered a sexually transmitted
If youre sexually active, it is good idea to get tested for sexually transmitted infections regularly.
infection. Others include chlamydia, gonorrhea, syphilis, genital herpes, genital warts, hepatitis A, B and C and parasites. Some sexually transmitted infections, such as herpes, genital warts and syphilis, can be more easily transmitted than HIV, and condoms may not be as effective at preventing infection. Many sexually transmitted infections can be transmited to babies during pregnancy or delivery. Syphilis, like HIV, can be pased on to the baby in the womb. Others, such as gonorrhea, chlamydia, hepatitis B and C and genital herpes, can be transmitted during delivery. People living with HIV may get some sexually transmitted infections more easily than other people, and often have more serious symptoms. If you have a sexually transmitted infection that isnt treated, this can increase your ability to pass on HIV to other sexual partners if you do not practice safer sex. You can reduce your chances of getting or passing on sexually transmitted infections by practising safer sex. If youre sexually active, it is good idea to get tested for sexually transmitted infections regularly. Speak with your doctor about testing for sexually transmitted infections.
Chlamydia
Chlamydia is one of the most common sexually transmitted infections. Symptoms of chlamydia include a burning feeling when youre urinating, and a discharge from your penis, vagina or rectum (ass). Chlamydia can also infect your throat and eyes. Many people, especially women, wont have any symptoms. If left untreated in women, chlamydia can cause a serious infection called pelvic inflammatory disease. In men, chlamydia can cause an inflammation of the
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epididymis, the thin tube that connects the testes to the urethra (the tube you pee through). Chlamydia can be treated easily with antibiotics. If you have chlamydia, anyone youre having sex with should be treated; otherwise, you and your partner(s) can get reinfected again and again. Chlamydia is transmitted easily through unprotected oral, vaginal or anal sex.
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LGV
LGV stands for lymphogranuloma venereum and is caused by a type of chlamydia bacteria. LGV is common in Africa, Asia, South America and the Caribbean. There have also been outbreaks among gay men in Europe, the United States and Canada. Both men and women can be infected with LGV. The infection has three major stages. In the first stage, three days to three weeks after getting infected, there may be a small, painless sore where the bacteria got into your body (mouth, anus, vagina or penis). Many people dont get a sore or dont notice it. You will be able to give LGV to others from this point. In the second stage, 10 to 30 days later (or even longer), your glands may become painfully swollen. You may feel ill and have a fever, and you may have discharge from your penis, vagina or anus. If left untreated, LGV can later go on to cause serious complications. This third stage of infection can happen years after the first infection. Hemorrhoid-like growths can appear around your anus. The genitals can swell massively and the rectum (inside your ass) can be seriously damaged; you may need to have surgery. Most symptoms of the first two stages can be easily missed. As long as its treated before it gets to the third stage, LGV is quickly cured with three weeks of antibiotics and leaves no lasting damage. In women, LGV often shows no symptoms until the third stage.
Gonorrhea
Gonorrhea may cause a thick discharge from your penis, rectum or vagina, and sometimes a burning feeling while youre urinating. In many people, especially women, there may be no symptoms. Gonorrhea can also occur in your throat if you have unprotected oral sex. It can develop into an ongoing, serious infection if it isnt treated. It can spread through your blood to other parts of your body,
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and can lead to sterilitythe inability to have children. In women, it can cause pelvic inflammatory disease. Gonorrhea is treated with antibiotics. If you have it, anyone youre having sex with should be checked and treated if necessary.
Syphilis
If left untreated, syphilis goes through three stages, with different symptoms at each stage. In the first stage, a single chancre (painless sore) forms in or around your penis, vagina, rectum, mouth or throat. The chancre will disappear on its own in three to six weeks, without treatment. The second stage happens two to four weeks after the disappearance of the chancre. The symptoms of the second stage are sores and a rash that may appear over your entire body and/or on the palms of your hands and soles of your feet. You may feel like you have the flu, with headache and aches and pains in your joints or bones. In addition, you may experience hair loss and flat, wart-like growths inside your anus or vagina. Without treatment these symptoms may come and go. However, you are only infectious during the first year. Symptoms of the third stage can be very serious and can result in blindness, heart or brain damage and, in some cases, death. Third-stage syphilis may take many years to develop, but people with HIV seem to develop third-stage syphilis much faster than others. Syphilis is diagnosed by a series of blood tests. The first test, called the
The usual course of syphilis may be faster and harder to treat in people with HIV.
VDRL, is a screening test. Usually, if this test is negative, you dont have syphilis. However, people with HIV may have false-negative VDRL tests. (That is, the test says you dont have syphilis, even though you actually do.) If you suspect you have been exposed to syphilis, you may want to ask your doctor to run two other tests, called the FTA-ABS and the MHA-TP. The usual course of syphilis may be faster and harder to treat in people with HIV. Syphilis is treated with large doses of benzathine penicillin, given by injection into your butt cheeks over three consecutive weeks. Penicillin is the preferred treatment for syphilis. If youre allergic to penicillin, your doctor may desensitize you to its effects. This is done by giving you tiny doses at first, and slowly building up the dosage until you can take the full amount.
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Condoms can reduce but do not eliminate the risk of transmitting syphilis when used for anal, vaginal or oral sex. Syphilis can also be transmitted to a baby in the womb or during delivery. In the past few years, there have been outbreaks of syphilis in several Canadian cities. Many of these infections have been among people living with HIV.
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Genital herpes
Genital herpes is caused by a virus known as herpes simplex 2, or HSV-2. (Cold sores around the mouth are usually caused by a related virus, HSV-1). Symptoms of genital herpes include itching or tingling around the infected area (such as the anus, vagina, penis or testicles), an outbreak of painful blisters or sores that later form scabs, and sometimes a mild flu-like illness. It may take two to three weeks for symptoms to go away. Doctors can often diagnose herpes simply by recognizing the symptoms, but infection can only be confirmed by swabbing the blisters and sending the fluid to the laboratory. Herpes blisters may show up two days to three weeks after contact with an infected person, but can take months or years to appear. Once you are infected, the herpes virus stays in the body permanently, usually causing periodic outbreaks of blisters and symptoms. Some people have monthly outbreaks, some less frequently, and some people (about one in 10) never have another outbreak after the first. Between outbreaks, the virus stays in the body in an inactive state. Stress, menstruation, poor diet, lack of rest, illness, and exposure to extreme heat, cold or sunlight seem to trigger outbreaks for some people. Others dont notice any special reason for an outbreak. Condoms can reduce the risk of transmission, but they dont eliminate it, since condoms do not always cover the infected area. The herpes virus can be passed on during skin-to-skin contactmouth to genitals, genitals to genitals, genitals to ass and mouth to ass. It can be transmitted when there are no symptoms present, as well as by direct contact with a sore. As with all sexually transmitted infections, pregnant women can pass the virus to their babies during delivery.
Theres no cure for herpes infection, but treatment can reduce the symptoms and speed up recovery.
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Theres no cure for herpes infection, but treatment can reduce the symptoms and speed up recovery. The possibility of repeated outbreaks varies from person to person. In time, outbreaks may become less frequent or stop altogether. However, people with severely weakened immune systems (very low CD4+ cell counts) can experience more severe and more frequent outbreaks. Having herpes also makes it easier to transmit or be infected by HIV.
HPV and genital warts

The human papillomavirus (HPV) can cause genital warts. These warts appear, often in large numbers, around the head of your penis, on your vulval lips, in your vagina, on your cervix, on your anus (your asshole), in your rectum (inside your ass) or around your groin area. The warts are ugly but generally painless. They may make sex less pleasant. The warts are usually removed with liquid nitrogen. The human papillomavirus is associated with cervical dysplasia (abnormal cells of the cervix) and cervical cancer in women, and with anal dysplasia
Practising safer sex and keeping it sexy can be a challenge for everyone.
(abnormal cells of the anus) and anal cancer in both men and women. Women who have HIV should have regular Pap tests. Men who have had the human papillomavirus should have regular rectal exams and possibly Pap tests of the rectum, where available. Condoms reduce but do not eliminate the risk of transmission. Vaccination can prevent some strains of papillomavirus infection. This may reduce the likelihood of getting warts or cancers. Vaccination may have a role to play for people living with HIVespecially if given before exposure to the papillomavirus strains targeted by the vaccine.
Hepatitis A, B and C
For more information on hepatitis, A, B and C see Chapter 12, HIV-related infections and cancers.
Sexual dysfunction
Practising safer sex and keeping it sexy can be a challenge for everyone. Sexual dysfunction can be defined as any difficulty during sex that prevents the
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individual or couple from enjoying sexual activity. Living with HIV can increase the challenge, as certain anti-HIV drugs might cause problems in becoming or staying aroused. Using a condom can interrupt the moment and make this even more difficult. It is important to talk to your doctor or other healthcare provider because, in many cases, sexual dysfunction can be treated and you can have a fulfilling and safe sexual life.
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Relationship issues
Beginning and maintaining a relationship can be challenging. Living with HIV can add a complication and may make a romantic or sexual relationship seem impossible. Still, many people with HIV are in fulfilling relationships, some with partners who are HIV-negative and others with partners who are also living with HIV. Some people with HIV choose not to focus on romantic or sexual relationships and are satisfied to focus on relationships with friends and family. People in relationships may work to make decisions together, including decisions about sexual activities and sexual health. However, partners in relationships may find it hard to balance each others concerns, needs and influence. When one partner has more power and control than the other, it is important to talk about this imbalance. Power imbalances in relationships can develop for all sorts of reasons. For example, one partner might earn more money and the other is dependent on him or her for living expenses. Power imbalances can change: one partner might have power in one circumstance but not in another. Be aware of the power you hold in your relationship. Make sure it doesnt prevent you and your partner from talking about things that are important to each of you. Make sure that both you and your partner(s) are able to communicate freely. Sometimes the use of unequal power, or the fear that it might be used, might make it difficult for you to insist on things that are important to you, such as condom use. If this is the case, talk to someonea friend, supportive family member or a community organization.
Many people with HIV are in fulfilling relationships, some with partners who are HIV-negative and others with partners who are also living with HIV.
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Resources
HIV Transmission: Guidelines for Assessing Risk National guidelines from the Canadian AIDS Society (www.cdnaids.ca) The Positive Side Health and wellness magazine contains articles about health living, such as: Sexual healing Magnetic [serodivergent] couples HIV, sex and viral load Herpes: the other H word Look under Health and Well-Being in the e-zine index (www.positiveside.com) Pozitively Healthy: a gay mans guide to sex and health Booklet on sexual health for gay men living with HIV from the Poz Prevention Working Group of the Ontario Gay Mens Sexual Health Alliance In-Depth Factsheets on sexually transmitted infections Comprehensive information for people living with HIV and their care providers Family planning options: a guide for serodiscordant couples Booklet from the Canadian Hemophilia Society (www.hemophilia.ca) Condoms. Unwrapped. The ins and outs of condoms for gay and bisexual men Booklet from the AIDS Committee of Toronto (www.actoronto.ca) Cruising: the ins and outs of hooking up for men Booklet from the AIDS Committee of Toronto (www.actoronto.ca) Sexuality and U Information and education from the Society of Obstetricians and Gynaecologists of Canada (www.sexualityandu.ca/home_e.aspx) STD Resource Comprehensive information on sexually transmitted infections from the British Columbia Centre for Disease Control (www.stdresource.com)
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8
Positive prevention
Positive prevention, or poz prevention, is a way of reducing HIV transmission by involving HIV-positive people in prevention strategies and prevention work. It builds on years of thought and attention that people living with HIV have given to HIV prevention. This section is an introduction to positive prevention and a step toward making it useful in practical ways for those of us living with HIV. About the author
David Hoes work on HIV/AIDS over the last 20 years includes work in the community and being an advisor to governments. David is a person living with HIV and is a personal life coach in Ottawa. His HIV work now focuses on advocating for new ways to engage people with HIV in HIV prevention. As part of this work, David is currently working with the Positive Prevention Working Group of the Ontario Gay Mens Sexual Health Alliance.
CONTENTS
What is positive prevention? Why is positive prevention important? Principles of positive prevention Some things to think about
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What is positive prevention?

Positive prevention, or poz prevention, is a way of reducing HIV transmission specifically designed by and for people living with HIV. For many years, HIV prevention campaigns were directed mainly at HIV-negative people, focusing on how they could protect themselves from getting HIV. This neglected to consider how people with HIV can contribute to HIV prevention.
Positive prevention resources
Positive prevention is a way of reducing HIV transmission specifically designed by and for people living with HIV.
In 2000, the British Columbia Persons with AIDS Society (BCPWA) began to work on positive prevention. You can find BCPWAs online poz prevention resources at: www.bcpwa.org/empower_yourself/positive_prevention. At about the same time in the United States, the National Association of People with AIDS (NAPWA) set out their Principles on Prevention with Positives. You can find NAPWAs online poz prevention resources at: www.napwa.org/resources. The Ontario Poz Prevention Working Group of the Gay Mens Sexual Health Alliance has published a guide for positive gay men with advice on sex and sexual health. The guide, Pozitively Healthy, is available from the CATIE ordering centre at: www.catie.ca.
Positive prevention is a set of ideas about how people with HIV can contribute to the shared responsibility of reducing HIV in our communities. In practical terms, it is about taking better care of ourselves and the people we connect with. It is also about having the necessary services and environment to support us to do this over our lifetimes. Positive prevention aims to: empower people with HIV and the people with whom we have sex; promote healthy relations with sexual partners; improve the conditions that contribute to strengthening the sexual health and well-being of people with HIV; reduce the possibility of new HIV infections and other sexually transmitted infections.
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Why is positive prevention important?

All new HIV infections come from people who already have HIV. Research tells us two important things in this regard: firstly, that the vast majority of us have no desire to pass on HIV and that, even if we slip up, we still carry a standard of caring for people and our communities. Secondly, we know that just over one-quarter of people who are infected with HIV in Canada are unaware of their HIV status. Taking responsibility for preventing HIV transmission is not as simple as knowing about safer sex, or not sharing needles. It involves thinking deeply about how we make risk decisions and taking the step to know our HIV status by testing. Beyond knowing our own HIV status, being committed to preventing HIV transmission involves a deep and personal understanding of why we might consider taking risks with our own and others health. We need to understand the value we place on sexual pleasure, the role that addictions play in our personal lives, the reasons we might be led to place ourselves or another person in a vulnerable situation, our fears about rejection, our need to be accepted, our insecurities about our attractiveness to others, and so forth. We also need to look directly at what we truly value when we increase risk. This could be about deep connection, heightened sexual charge or a sense of holding on to a really important part of who we are. If we are able to find ways to use this self-knowledge to lessen the risk to our partners and ourselves, then we become part of the solution. In practice, this may mean changing an inner decision of Im willing to take this risk to actually asking our partner, What risks are you all right with taking?
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Just over one-quarter of people who are infected with HIV in Canada are unaware of their HIV status.
Principles of positive prevention

The following principles of poz prevention are a starting place for managing our health and risk. They also call on us to respect our sexual partners. Strategies for putting these principles into practice are also included.
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Shared responsibility
It takes two for an HIV infection to move from one person to another. Shared responsibility means that preventing HIV transmission is not solely up to the HIV-positive person or the HIV-negative person. We do have a responsibility to share decisions that can help prevent the virus moving from one of us to another.
Behaviour change
Behaviour change is easier when we know why we want to change. The
Shared responsibility means that preventing HIV transmission is not solely up to the HIV-positive person or the HIV-negative person. We do have a responsibility to share decisions that may result in the virus moving from one of us to another.
biggest change in behaviour has to do with communication, particularly with yourself (self-talk). A good time for self-talk is either before you find yourself in a situation where risk may happen or after you have taken a risk and want to make sense of it. The self-talk might consist of visualizing a situation where you meet someone you want to have sex with and you talk to them about HIV and the risks they are willing to take. Think about how you would introduce the topic. Imagine the questions that the person might have and how you would react. Imagine how you would react to different things that this person might say about HIV and risk. In this way, you can practice and perfect the words youll say and the things youll do when the opportunity arises. Alternatively, you might try reviewing a situation where you took risks that you didnt want to and imagine what you could have done or said so that things happened differently.
Taking care of your health and reducing harm

Reducing harm means making decisions to lessen some of the potential harms from sex to yourself and others. Preventing HIV transmission is about developing self-respect and confidence. If risky behaviour is the thing you want to change and it is a challenge, you can always start with practising a change in another behaviour that you care about and that is more manageable, perhaps something that is not even directly related to sex. For example, you might simply make a plan to clean your apartment weekly or start going to an exercise class at your local gym. Success with small changes begins to rewire our ability to take charge.
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Disclosure
Telling another person that you are HIV-positive is a brave act. It is especially tough if you believe it might result in rejection. However, the law requires people with HIV to disclose their status before having sex that could pose a significant risk to their partners. This certainly includes unprotected anal and vaginal sex. Disclosure may even be required in some cases of protected sex (see Chapter 21, Legal issues, for a discussion of this complicated topic).
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Tips on disclosing your status

Here are some tips on the art of disclosing your status. There are more in Chapter 6, Your emotional health and Chapter 7, Your sexual health. Decide on disclosure or safer sex before you get to the heat of the moment. Know that you can handle rejection. Even though it can be painful and upsetting, it is not the end of the world. Practice disclosure with people you trust. Go out with a friend. If you find yourself rejected after disclosing, you can still talk it over with your friend. Be ready for a conversation with your prospective partner after you disclose.
Telling another person that you are HIV-positive is a brave act.
Some things to think about

Twenty-five years ago when AIDS first appeared, many people began to think about and discuss their sexuality in ways they never had before. Since that time, the ways in which we think about sex and how we have sex have changed greatly.
Preventing HIV transmission is about developing self-respect and confidence.
Desire for unprotected sex

Many people wish they could have unprotected sex more often. This is a natural and normal desire. In the gay community, unprotected anal sex is often
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Handling rejection after disclosure: Its not about me. Its about you.
In order to get ourselves lovedor laidwe all risk the possibility of rejection. But as people with HIV, we may feel we have a special relationship to rejection. Some of us have been rejected by a potential sexual partner after we have told this person that we are HIV-positive. Though HIV-positive people definitely meet partners who accept our status, dont think of it as a big deal and love us for the amazing people we are, many of us are afraid to take emotional risks because the possibility of rejection scares us. Here are some practical tips and affirmations to help you pick yourself up, dust yourself off and keep looking for love if you disclose and are rejected. 1. Know that you did the right thing even though it was difficult to disclose your HIV status. It took courage to be honest and to put yourself in a vulnerable position. Give yourself credit for that. 2. There are lots of happy, sexy HIV-positive people with partners who are HIV-negative (or HIV-positive, for that matter!) out there. So this person rejected youits their loss! There are lots of people out there who are going to see you for the great catch that you are. It will happen in time. You just need to stay in the game. 3. There may be reasons for their rejection that can take the sting of it away. Maybe they are carrying too much emotional baggage about HIV around with them right now: a recent scare about their own HIV status, a friend or lover who died of HIV in the past, a bad experience with someone who wasnt honest about their status. 4. Maybe theyre dealing with other stuff: a bad break-up that had nothing to do with HIV, depression, self-esteem issues, financial worries or the loss of their job. None of this is about you; its about them. 5. Theres really not much you can do if this person has decided that they dont want to take the risk of having sex or pursuing a relationship with someone who has HIV. It is their choice to make and though you may not like it, you have to respect it.
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called barebacking. It is a controversial issue that has received a lot of attention. Sex workers are sometimes offered additional payment to have unsafe sex with their customerscreating a difficult dilemma. Some mixed-status heterosexual couples choose to have unprotected sex so they can become pregnant.
POSITIVE PREVENTION
Serosorting
Often, the choice to have unprotected sex is combined with other strategies that are meant to reduce risk. Some people choose sex partners of the same HIV statusHIV-positive people with HIV-positive partners, HIV-negative with HIV-negativewith the intent to avoid a new HIV infection. This is known as serosorting. Serosorting does not necessarily mean having unprotected sex. However, for many people, the two go together. Serosorting allows two HIV-positive people to have unprotected sex without infecting an HIV-negative person. What is absolutely vital in serosorting is knowledge and communication. For HIV-positive people, it is vital you get to know the other persons HIV status; do NOT assume your partners status. Many new HIV infections happen because of misunderstandings and assumptions about the other persons HIV status. If you are not sure, ask. Two HIV-positive people who decide to have unprotected sex must also consider the risks of re-infection and other sexually transmitted infections, including hepatitis C. See Chapter 7, Your sexual health, for a more detailed discussion of these risks.
Life changes
A major stress in our livesan addiction, a breakup, health problems, loss of a job or friendshipcan lead us to agree to do things we normally would not. If you find this is happening to you, then it is time to seek help to understand the feelings you may have about taking risks or the stress you are feeling. Talk to a friend or go to an AIDS service organization or other mental health professional. You are worth it.
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Stimulants, recreational drugs and addictions

Alcohol and recreational drugs can be fun, but they can also affect our safer sex decisions and the way we look after our own health. If you feel that partying is not getting in the way of you maintaining your health, always take condoms and lube with you when you go out. But if partying is affecting your ability to make good sexual decisions and you find yourself having unprotected sex without being in charge, get help from a counsellor at an AIDS service organization or from another mental health professional. See Chapter 4, Healthy living, for more on drugs and harm reduction.
Preventive treatments
You may have heard about using anti-HIV drugs to prevent transmission. This is a relatively new field of research and we are just beginning to learn what role these drugs may play in HIV prevention. Some studies appear to show that some people with HIV who maintain a sustained undetectable viral load as a result of adhering to their anti-HIV drugs may reduce the chances of transmitting HIV to partners when having unprotected sex. Not everyone agrees with this research and this research has not been done on gay men. More importantly, studies have shown that even with an undetectable viral load, it is possible to transmit HIV through unprotected sex. For decision-making between individuals, lowering viral load is not a completely reliable way to make sex safe. Post-exposure prophylaxis (or PEP for short), means a temporary course of anti-HIV drugs for an HIV-negative person, starting immediately after he or she has been exposed to HIV. If you think you may have exposed your sexual partner to HIV, you can take your partner to the emergency room of your local hospital. PEP may be available there, although payment will probably be an issue. PEP should be started within 72 hours after exposure to HIV. Pre-exposure prophylaxis, or PrEP, is a similar idea, in which an HIV-negative person may take anti-HIV drugs before being exposed to HIV. The idea is that this may reduce the chance of becoming infected. Currently there has not been enough research to determine whether or not PrEP will work.
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Resources
Positive Prevention Information and resources for people with HIV from the British Columbia Persons with AIDS Society: (www.bcpwa.org/empower_yourself/positive_prevention) Safer Sex for the HIV positive Collection of positive prevention articles and resources: (www.thebody.com/index/treat/prevpos.html) Pozitively Healthy : a gay mans guide to sex and health Booklet on sexual health for gay men living with HIV from the Poz Prevention Working Group of the Ontario Gay Mens Sexual Health Alliance Poz Prevention: knowledge and practice guidance for providing sexual health services to gay men Practical manual for service providers who work with gay men
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Monitoring your health

This chapter is about keeping track of your health. First of all, well look at what you and your doctors should be looking forthe most important aspects of your physical and mental health. Next, well look at how thats donethe various tests and procedures used to make sure youre staying healthy and to spot problems that need attention. This includes the tests you may have heard aboutCD4+ cell counts and viral load tests. While those are critical to HIV care, theres a lot more to monitoring your health. Well look at how your CD4+ cell counts and viral load fit into the overall picture. CD4+ cell counts and viral load are especially important for deciding when to start anti-HIV treatment, and for monitoring your response to that treatment. Well take a first look at those issues here, and revisit them at greater length in Chapter 10 (Treatments).
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CONTENTS
Why your health is monitored Monitoring your HIV infection Other things to monitor How your health is monitored Tests specific to women Tests specific to men
About the author

Paul MacPherson is an assistant professor of medicine and a specialist in the division of infectious diseases at the Ottawa Hospital General Campus. His clinical practice is primarily dedicated to the treatment of patients with HIV infection. He is also appointed to the department of biochemistry, microbiology and immunology at the University of Ottawa and is a staff scientist at the Ottawa Health Research Institute. His primary research focus is on understanding at the molecular level how HIV disables the immune system.
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MONITORING YOUR HEALTH
Why your health is monitored

You should monitor your health and overall state of well-being on a regular basis. The saying, an ounce of prevention is worth a pound of cure, is particularly true if you are HIV-positive, whether or not you are on anti-HIV treatment. Once inside your body, HIV slowly disables your immune system. While it infects and lives in CD4+ cells, it also affects many other immune cells and prevents your body from mounting a normal immune response. Without an intact immune system, you are not able to fight off other germs, including bacteria
Because each individual progresses at his or her own rate, and because loss of immune function can become evident in different ways, it is important that you see your doctor regularly.
and other viruses that can make you sick. Without treatment, the length of time it takes HIV to destroy the immune system is different for different people, but on average it requires about eight to 10 years (see Chapter 2, HIV... the basics). Some people, however, progress much more rapidly while others progress very slowly, if at all. Because each individual progresses at his or her own rate, and because loss of immune function can become evident in different ways, it is important that you see your doctor regularly. If you are not taking anti-HIV drugs, it is important that you and your doctor: monitor the effects of HIV on your immune system; watch for the appearance of life-threatening infections; and consider when to start therapy. If you are taking anti-HIV drugs, you should still see your doctor regularly to: monitor for side effects; ensure that the drugs continue to work at preventing HIV from making new copies of itself; and watch for any drug resistance that might develop.
Monitoring your HIV infection

In order to monitor how HIV is affecting you and your immune system, your doctor will especially want to do blood tests to follow your CD4+ cell count and your viral load, as well as your overall state of health.
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CD4+ cell count

One key component of your immune system is a type of white blood cell, called a T-cell. T-cells help recognize and destroy germs that can harm you. CD4+ cells (sometimes known as T4 cells) are a specific type of T-cell. CD4+ cells are crucial in co-ordinating your immune system and ensuring a number of other immune cells function properly (see Chapter 2, HIV the basics). CD4+ cells are infected and killed by HIV. Initially, your body will be able to replace the lost CD4+ cells. But as HIV continues to make copies of itself and your overall immune system weakens, the CD4+ cell count will fall. The CD4+ cell count, or simply CD4 count, is a measure of the strength of your immune system. A normal CD4+ cell count is generally between 500 and 1,500 cells per cubic millimetre (mm3)about the size of a pinheadof blood. As with other tests, some peoples CD4+ cell count may naturally fall above or below these values. The CD4+ cell count also fluctuates depending on how active your immune system is when the test is taken. Even tests done just 12 hours apart from each other can give different values. If one CD4+ cell count seems out of line with previous values, it may be worth repeating it. It is also a good idea not to measure your CD4+ cell count if you are feeling unwell or were recently vaccinated. Your immune response to the infection or vaccination may make your CD4+ cell count temporarily high or low. Your CD4+ cell count will give you and your doctor a rough idea of how strong your immune system is. Values above 500 cells/mm3 generally indicate your immune system is strong enough to fight off most infections. Values between 200 and 500 cells/mm3 raise some concern: they indicate that your immune system is becoming weak, and that you are more vulnerable to infections. CD4+ cell counts below 200 cells/mm3 mean that your immune system is very weak and that you are at risk of developing life-threatening infections such as Pneumocystis pneumonia (PCP). If the CD4+ cell count drops to less than 100 cells/mm3, there is a high chance that you will develop other severe infections such as a vision-threatening virus infection known as cytomegalovirus (CMV), or activation of mycobacterium avium complex (MAC) or the parasite toxoplasma. For more information on these infections, see Chapter 12, HIVrelated infections and cancers.
Your CD4+ cell count will give you and your doctor a rough idea of how strong your immune system is.
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The CD4+ cell percentage shows what proportion of the total T-cells are actually CD4+ cells. CD4+ cells usually make up between 35 and 50 per cent (one third to a half) of your total T-cells. As the number of CD4+ cells declines, they will make up less and less of the total T-cell population, and your CD4+ cell percentage will decline. Anti-HIV treatment greatly reduces the ability of HIV to make copies of itself. Once HIV is suppressed, it no longer attacks the cells of your immune system, and your CD4+ cell count will begin to rise. How fast and how high the CD4+ cell count increases varies from person to person and depends a great
Generally, as long as the CD4+ cell count rises or stays above 200 cells/mm , you will not be at high risk of becoming ill.
deal on how advanced your HIV infection was before drugs were started. Some people have a very modest increase in their CD4+ cell count; in others the CD4+ cell count returns to normal. Generally, as long as the CD4+ cell count rises or stays above 200 cells/mm3, you will not be at high risk of becoming ill. Your doctor will continue to monitor your CD4+ cell count to ensure it remains within a safe margin.
Viral load
The viral load is a measure of the amount of HIV in your blood. The viral load test measures the number of copies of HIV in a millilitre (mL)about a teaspoonof blood. In untreated individuals, it varies widely: some people have
Your doctor will use viral load testing regularly to monitor your response to treatment. You should see a significant reduction in your viral load within four to six weeks of beginning anti-HIV drugs, an indication that the drugs are effective.
viral loads of only a few hundred, while others may have viral loads greater than 100,000. Perhaps more than any other test, the viral load test may show significant changes over time in untreated people. With this test, it is especially important not to focus on any one number, but to look at the trend over time. Generally speaking, the higher the viral load, the faster HIV will disable the immune system. For this reason, a high viral load may prompt your doctor to suggest beginning anti-HIV drugs sooner than if you have a low viral load. Anti-HIV treatment reduces HIVs ability to make new copies of itself. When you start effective anti-HIV treatment, your viral load should begin to decline. The goal of treatment is to maximally suppress HIV to the point that it can no longer be detected using our current tests. The lower level of detection for HIV in the blood is 40 to 50 copies per mL, depending on which test is being used. So, if your viral load is less than 50 copies/mL, it is undetectable. Keep in mind
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that undetectable does not mean there is no virus present. It simply means there are fewer copies of HIV than can be measured by our current technology. Your doctor will use viral load testing regularly to monitor your response to treatment. You should see a significant reduction in your viral load within four to six weeks of beginning anti-HIV drugs, an indication that the drugs are effective. Once HIV is fully suppressed (that is, becomes undetectable) in your blood, viral load tests should continue to be done on a regular basis to ensure HIV remains suppressed.
Resistance testing
HIV can become resistant to anti-HIV drugs. Drug-resistant strains of HIV can be transmitted from person to person, and can be identified by resistance testing (also called genotypic testing). Before you begin anti-HIV treatment, your doctor will likely have already obtained a genotype of the HIV strain you were infected with. The genotype will indicate which anti-HIV drugs the virus is sensitive to and which ones it is resistant to. If your viral load does not reach undetectable levels or if it rebounds after reaching undetectable levels, your doctor will likely do another genotype test and consider changing your drugs. Another type of resistance testing, called phenotyping, is not widely available in Canada.
Before you begin antiHIV treatment, your doctor will likely have already obtained a genotype of the HIV strain you were infected with. The genotype will indicate which anti-HIV drugs the virus is sensitive to and which ones it is resistant to.
Other things to monitor

Whether or not you are taking anti-HIV drugs, you should remain aware of your overall state of health. Monitoring your health means more than monitoring the effects of HIV.
General health
Keeping an eye on your overall health is important for everyone, regardless of HIV status. Its even more important for HIV-positive people, since HIV can make you more vulnerable to conditions, both minor and major, that can affect nearly any part of your body. Strive to maintain a healthy lifestyle. Getting an appropriate amount of rest, eating a balanced diet and exercising regularly will help you to feel healthy and strong.
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Sexual health
Sex is a natural and regular part of life for most people. It can reduce stress, express intimacy and simply feel good. To maximize your pleasure, you should take an active role in maintaining your sexual health. For those with HIV, there is a greater risk of acquiring sexually transmitted infections and, if you get one, the symptoms may be more severe. On the other hand, some sexually transmitted infections do not always cause symptoms right away. If you are sexually active with different partners, you may want to be tested regularly for diseases
For people with HIV, there is a greater risk of acquiring sexually transmitted infections.
such as gonorrhea, chlamydia and syphilis (see Chapter 7, Your sexual health). Using condoms greatly reduces the risk of transmitting HIV to your partner(s), and will also protect you from sexually transmitted infections like gonorrhea and chlamydia. Keep in mind, though, that condoms will not necessarily protect you from all sexually transmitted infections. Syphilis, herpes and genital warts can all be passed on even if you always wear a condom.
Mental health
Depression and other mental health problems are common, and often go unrecognized and untreated. Everyone feels down from time to time, but if you feel low or hopeless for an extended period of time, be sure to discuss this with your doctor. Depression, as well as stress and anxiety, are too frequently ignored and will negatively impact your health and sense of well-being (see Chapter 6, Your emotional health). Other mental health problems can sometimes be caused by the effects of HIV on the brain, or by certain life-threatening infections (see Chapter 12, HIVrelated infections and cancers). These problems are now very rare, since they
Make sure that mental health monitoring is part of your regular check-ups.
are preventable by proper care; they are usually only seen in people with very advanced HIV disease. Early symptoms of dementia caused by HIV or other infections can include difficulty thinking, remembering or concentrating, as well as problems with co-ordination and body movement. Other problems, such as depression, can cause similar symptoms. You should immediately let your doctor know if you notice anything unusual. Make sure that mental health monitoring is part of your regular check-ups. Try to be aware of your mental state, your coping skills and how you deal with
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stress. Difficulty coping can lead to excessive alcohol and drug use, both of which can further compromise your health.
Infections, cancer and other complications

As HIV disables the immune system, people are more likely to get infections that a healthy immune system would fight off. For example, the fungal infection PCP causes fever and breathing difficulties and generally occurs in people with a CD4+ cell count less than 200 cells/mm3. As the CD4+ cell count drops further, the parasite toxoplasma may reactivate in the brain, or the virus CMV may flare up in the eye causing blindness. In addition, certain cancers such as lymphoma are more common in people with HIV with lower CD4+ cell counts. These infections are described in more detail in Chapter 12, HIV-related infections and cancers. They can usually be avoided by keeping your CD4+ cell count high enough. An immune system that has been disabled may also malfunction and attack the body by mistake: this is known as autoimmune disease. One relatively common autoimmune disease in HIV-positive people is called ITP, or immune thrombocytopenia purpura. This occurs when your immune system mistakenly destroys your platelets. Low platelets can put you at significant risk of bleeding. You do not have to have a low CD4+ cell count to develop an autoimmune disease. It is therefore important that in monitoring your HIV infection, you keep track of more than just your CD4+ cell count and viral load. You should see your doctor regularly and watch for any complications that may arise from HIV.
Monitor your cholesterol and blood pressure with your doctor and consider treatment if either is elevated.
Cardiovascular (heart) health

Heart disease can creep up on you slowly, but once present it can be difficult if not impossible to reverse. Monitor your cholesterol and blood pressure with your doctor and consider treatment if either is elevated. Maintain good heart health by eating a low-fat diet and getting regular exercise. Smoking is a major contributor to heart disease. If you smoke, consider a smoking cessation program.
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Diabetes
Diabetes has often been referred to as the silent killer, as people may develop high blood sugar without being aware of it. You should have your blood sugar checked regularly, especially as you get older, if diabetes runs in your family or if you are on anti-HIV treatment. The blood sugar test should be done in the morning before you eat anything. Your doctor may also request a blood test called a hemoglobin A1C, which provides a rough idea of your blood sugar levels over the past couple of months.
You should consider vaccination for hepatitis A and hepatitis B if you travel or have multiple sexual partners.
Hepatitis A, B and C
Hepatitis B and C are viral infections that can remain in your liver for many years and cause permanent damage, including cirrhosis and liver cancer. Hepatitis A, another viral infection of the liver, is usually cleared by your immune system and only very rarely causes permanent damage. However, it can make you quite sick for a few weeks. If you already have hepatitis B or C, getting hepatitis A on top of that can be serious. Blood tests can check whether you have any of these infections (see Chapter 12, HIV-related infections and cancers). If you do not have hepatitis B, consider getting vaccinated to protect against getting it in the future. You should especially consider vaccination for hepatitis A and hepatitis B if you travel or have multiple sexual partners. Unfortunately, there is no vaccine for hepatitis C. If you have tested positive for hepatitis B or C, you should get a referral to a hepatitis specialist.
How your health is monitored

Symptoms
Your doctor will monitor your health in a number of ways. First, he or she will ask how you have been feeling lately, whether you have been having any symptoms and, if so, when they started. These could include things like fevers or night sweats, diarrhea, headaches or losing weight unexpectedly. Your doctor will likely ask if you have noticed any changes or problems yourself, then follow up with some specific questions about things you may
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not have mentioned. Be sure to take your time and answer honestly. Not every ache and pain is abnormal, but let your doctor know about anything persistent, that seems out of the ordinary, or is a definite change from the way you used to feel. You can make a note of any changes to your health in your personal health record (see page 317) so you dont forget to mention things to your doctor.
Physical examination
Next, your doctor will examine you. This may or may not occur with every visit. If you are feeling well and have no symptoms, your doctor may not examine you or may only look for a few specific things. Physical exams may be more frequent if you have just been diagnosed or if you mention that you have noticed any changes. For an especially thorough exam, you may be asked to undress and wear a hospital gown. In any case, your doctor should describe any concerns and what action he or she will take to follow up. The physical exam generally begins with your vital signs: your pulse, blood pressure, breathing rate and temperature. Next, your doctor will likely look in your ears, eyes and mouth for any signs of infection, and feel the lymph nodes in your neck, armpits and groin. Your doctor will listen to your heart by placing a stethoscope on your chest and then listen to your lungs by placing the stethoscope at various places on your back as you breathe in and out. To examine your abdominal organs, your doctor will place his or her hands on your stomach and press, lightly at first and then more firmly. The edges of your liver and spleen may be felt with the fingers or identified by tapping on your stomach just below the ribs. Your nervous system may be examined by checking your reflexes and strength as well as your balance. Finally, your doctor may have a look at your skin for any rashes or new lesions. Depending on whether you have been sexually active and whether you have symptoms, your doctor may also examine your genitals. For women, this means having a look at the outer labia (the outer lips of the vagina) for any sores or lesions. Then your doctor will insert a speculum to see the inside of the vagina and the cervix. For men, your doctor will examine the end of the penis for any discharge, and the shaft of the penis for sores or lesions. Next, your doctor will gently squeeze the scrotum just above the testicles to see if
Let your doctor know about anything persistent, that seems out of the ordinary, or is a definite change from the way you used to feel.
Physical exams may be more frequent if you have just been diagnosed or if you mention that you have noticed any changes.
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there are any signs of tenderness or inflammation. The testicles are also felt to be sure there are no lumps or bumps. For more information on tests specific to men and women, see pages 119 and 120.
Blood tests
Blood is made up of many different kinds of cells suspended in a clear fluid called plasma. Blood transports oxygen from your lungs, nutrients from your digestive tract and hormones from your glands to cells and tissues throughout
By looking at the levels of the substances that are carried in the blood, blood tests can tell you and your doctor a lot about how well your bodys organ systems are working.
the body. It transfers waste products to the kidneys and liver for elimination. Your blood also carries important proteins to allow for clotting, and antibodies that help fight off infections. By looking at the levels of the substances that are carried in the blood, blood tests can tell you and your doctor a lot about how well your bodys organ systems are working. They may also help confirm a diagnosis that was suspected based on symptoms and the physical exam. If you are interested, ask your doctor to explain your test results in a way that you can understand. Do not get too caught up in the numbers, but instead keep some of the following points in mind: Test results are compared to a normal range, which is a range of values within which the majority of healthy people would fall. Some people naturally have test results above or below the normal range, so the important thing is to identify what is normal for you. Keep an eye out for trends. Test results will normally vary from time to time but should generally stay within the normal range. Consistently rising or falling test results suggest that something is going on. Test results can vary from one lab to another. It is generally a good idea to have your blood work done at the same lab every time so changes in results can be more easily identified. Test results can be wrong. Try not to let a single abnormal, unexpected result worry you too much. Instead, consider repeating the test before making significant treatment decisions.
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Common blood tests

Below is a list of the most common blood tests. For all of these tests, a small amount of blood (generally 5 to 10 mLa couple of teaspoons) is taken from a vein in your arm and sent to the lab. Complete blood count (CBC) The CBC is one of the most common tests, and can alert you and your doctor to a number of health problems. Results outside the normal range can suggest the presence of infections, poor nutrition or specific diseases of the blood. Because blood cells are made in your bone marrow, abnormal results may also suggest problems with the marrow, such as infection or drug side effects. The CBC is actually made up of several different tests: White blood cell count This test measures the total number of white blood cells (your immune system cells) in a sample of your blood. A high number may suggest the presence of an infection, while a low number could suggest problems with your bone marrow. Differential There are several different types of white blood cells. These include cells called neutrophils, lymphocytes and monocytes, each of which has different functions. The differential tells your doctor how many of each cell type are present in your blood. Increases or decreases in the numbers can suggest different problems. Red blood cell count Red blood cells, which give blood its red colour, contain iron and transport oxygen from your lungs to other tissues. They also transport carbon dioxide from the tissues back to the lungs where you breathe it out. The red blood count tells you how many red blood cells are present in a sample of your blood. Hemoglobin Red blood cells contain hemoglobin, a molecule that binds iron in your red blood cells to allow for the transport of oxygen. Even if you have enough red blood cells, you may not have enough hemoglobin. Low hemoglobin is called anemia and can leave you feeling tired, short of breath or pale in appearance.
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Common blood tests

Platelet count Platelets help your blood to clot. When the platelet count is very low, you may bruise easily, bleed for longer than usual when cut or injured, experience frequent bleeding of the gums or develop a skin rash. Urea and creatinine Urea and creatinine are normal waste products formed by the chemical processes in cells. They are filtered out of the blood by the kidneys and excreted into the urine. A build-up of urea and creatinine in the blood suggest that the kidneys may not be functioning normally. Electrolytes Electrolytes, including sodium, potassium, chloride and calcium, are dissolved in your blood and must remain in balance. Severe vomiting or diarrhea can deplete electrolytes from your body making you feel weak or confused. Liver function tests Liver function tests include a number of different tests. Together, these will indicate the overall health of your liver. Transaminases The transaminases (aspartate aminotransferase, or AST, and alanine aminotransferase, or ALT) are enzymes contained within the cells of the liver. When the liver is damaged by alcohol, drugs or infections like hepatitis B or hepatitis C, liver cells die and release these enzymes into the blood. Raised levels of AST and ALT in the blood indicate the presence of liver inflammation. ALP (alkaline phosphatase) and GGT (gamma-glutamyl transpeptidase) A branching system of ducts collects a substance called bile from your liver and channels it to your gall bladder. Raised levels of ALP and GGT in the blood can indicate that these bile ducts are injured. Bilirubin When red blood cells die, a chemical called bilirubin is produced. Normally, it is filtered from the blood by the liver and excreted in the bile. If bilirubin builds up in the blood, it can make
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Common blood tests

your eyes and skin look yellow (this is called jaundice). Things that can cause the bilirubin to rise in the blood include increased red blood cell death, liver damage or a block in the bile ducts causing a backup of bile. Some drugs, such as the anti-HIV drug atazanavir (Rayataz), can also increase the level of bilirubin by slowing down the rate that the liver removes it from the blood. Albumin Albumin is a protein that is made in the liver and circulates in the blood. Low levels of albumin can indicate severe malnutrition or poor liver function. INR The INR (for international normalized ratio) is a measure of how quickly your blood can clot. Clotting proteins are made by your liver and so a slow clotting rate can indicate decreased protein synthesis by your liver. Blood sugar The sugar (glucose) in your blood is the major source of energy for your cells. Your body normally keeps blood glucose levels within a narrow range. When the glucose in your blood is abnormally high, which occurs in diabetes, it can cause damage to cells and tissues. High blood sugar levels are increasingly being seen in people on antiHIV drugs and may require a change of therapy, dietary changes or additional medications. Your blood glucose levels are best measured first thing in the morning before you have something to eat. Another way to check for diabetes is to measure the hemoglobin A1C, which provides a rough idea of the blood sugars over the past few months. Lipids Cholesterol and triglycerides are two major kinds of fat found in the body. Elevated LDL (low-density lipoprotein or bad) cholesterol is associated with heart disease and hardening of the arteries. HDL (highdensity lipoprotein or good) cholesterol helps to clear bad cholesterol from the bloodstream; higher HDL levels are good for heart health. Cholesterol The cholesterol in your blood comes from your diet and from what is manufactured by your own body. High levels of
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Common blood tests

cholesterol, especially the bad LDL cholesterol, are known to lead to heart disease. Anti-HIV drugs can also raise your cholesterol levels. If your cholesterol is high, your doctor may encourage you to exercise and adopt a low-fat diet in an attempt to bring it down. If this fails, you may need to consider taking cholesterollowering drugs. Triglycerides Triglycerides are another form of fat found in your blood. While you need some, too much is a bad thing. Anti-HIV drugs can increase your triglycerides as well, so levels should be monitored when people are on therapy.
Other tests
Urinalysis Testing your urine is another way to measure how well your kidneys are functioning. Your kidneys filter your blood, retaining important nutrients and excreting waste products into the urine. A routine urinalysis tests for things that should not be present in the urine, such as blood, protein, glucose (sugar) and white blood cells. Culture If your doctor suspects you have an infection, a sample of your blood, stool, urine, phlegm (sputum), pus, spinal fluid or other tissue may be sent to the lab for culture. Technicians try to grow germs from your samples. This process can take several days. If there are bacteria or other germs present in the sample, they can be identified. Some germs grow very slowly and may require several weeks to be identified. Serology Some germs cannot be grown in culture. However, your doctor can check your blood to see if you have antibodies to these germs. Biopsy Having a biopsy involves removing a small sample of your tissue (such as skin, lymph node or liver tissue) and examining it under the microscope. A specialized doctor called a pathologist will examine these tissue samples for abnormalities, germs or cancer.
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Scopes Fibre optics has allowed doctors to create scopes, long flexible tubes that can be used to see inside various parts of your body. An endoscope, inserted through the mouth, can be used to examine the stomach. A colonoscope, inserted through the anus, can be used to examine the large intestine. A bronchoscope, inserted through the mouth and down the windpipe, can be used to look inside the lungs. X-rays X-rays also allow your doctor to view inside your body. A chest X-ray can reveal abnormal tissue densities in the lungs caused by pneumonia or cancer. CT scan (CAT scan) and MRI These scanning machines create images of the inside of your body. A specialized doctor called a radiologist will examine these images to look for abnormalities in the organs and tissues. Bone scan Thinning of the bones (osteopenia and osteoporosis), commonly seen in older people, especially women past menopause, has been found in some people with HIV, especially those who have been HIV-positive for a long time. Bone scans can be used to measure bone density, predict the risk of fractures and gauge whether any additional treatment is required. Such scans are not yet standard practice for people with HIV, although some people now argue that they should be.
Women with HIV are at a higher risk of developing cervical abnormalities and cervical cancer, and should therefore have an annual Pap test.
Tests specific to women

The Pap test (or smear) is a screening test that looks for abnormal cell growth in the cervix (the entrance to the uterus) often caused by the human papillomavirus (HPV). Some abnormalities are mild and will go away on their own. Other abnormalities may suggest a more significant problem and the potential to develop cervical cancer (see Chapter 15, Women and HIV). Women with HIV are at a higher risk of developing cervical abnormalities and cervical cancer, and should therefore have an annual Pap test. If any abnormalities are found, your doctor may do follow-up Pap tests more frequently. To do a Pap test, your doctor will use a speculum to open the vagina and examine the cervix. A brush is used to collect cells from the surface of the cervix; these cells are then sent to the lab for examination.
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There is also evidence that anal cancer, which like cervical cancer is caused by HPV, is also more common among women with HIV. Ways to check for anal cancer include having your doctor use a finger to feel for abnormalities, having an anal Pap test or having a scope inserted in the anus to look for cancerous lesions. There are, however, no standard recommendations as to best practice. Tests for anal dysplasia (abnormal cells in the anus) are not routinely available throughout Canada; however, your doctor may know if a research project involving anal Pap tests is recruiting in your area. There is no evidence to suggest that breast cancer is any more common in
Men with HIV are at increased risk of developing anal cancer.
women with HIV than in HIV-negative women. It is generally recommended that all women over the age of 50 have an annual mammogram.
Tests specific to men

The prostate lies just in front of the rectum and below the bladder (see Chapter 7, Your sexual health). Semen from the testicles and urine from the bladder both pass through the prostate on their way out of the body. As men age, the prostate tends to enlarge and this can make peeing difficult. Prostate cancer can also develop, again more commonly in older men. Finally, sexually transmitted infections that usually appear in the penis can travel up to and infect the prostate, causing pain and discomfort. With this in mind, your doctor may choose to examine your prostate. To do so, he or she will insert a gloved finger with some lubricant into your anus and feel the prostate. Your doctor will assess the size of the prostate and feel for any tenderness or bumps. Men with HIV are at increased risk of developing anal cancer. Anal cancer in men has been associated with the human papillomavirus (HPV). Ways to check for anal cancer include having your doctor use a finger to feel for abnormalities, having an anal Pap test or having a scope inserted in the anus to look for cancerous lesions. There are, however, no standard recommendations as to best practice. Tests for anal dysplasia (abnormal cells in the anus) are not routinely available throughout Canada; however, your doctor may know if a research project involving anal Pap tests is recruiting in your area.
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Resources
HIV Viral Load Testing Brochure of frequently asked questions and answers about viral load tests for people with HIV Plain and Simple Factsheets on Monitoring Tests Available in multiple languages In-Depth Factsheets on Monitoring Tests Comprehensive information for people living with HIV and their care providers The Positive Side Health and wellness magazine contains articles about health monitoring, such as: Resistance assistance HIV, sex and viral load Me and my liver Look under Tests in the e-zine index (www.positiveside.ca)
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10
Treatments
This chapter provides an overview of all the main questions about HIV treatmentwhen to start, what to use and how to make it work. Since treatment information can be complex and changes quickly, we have written this chapter as a general introduction to the major treatment issues that you may face as a person living with HIV. However, as you begin to make treatment decisions, you may want more detailed and current information than this chapter provides. At the end of the chapter, you can find further resources by CATIE and others that provide more indepth information on the treatment topics covered here. About the author
CONTENTS
Treatment decisions Before you start When to start? Anti-HIV drugs Choosing treatment Starting treatment Making it work Changing treatment Taking breaks and stopping treatment
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Treatment decisions: the pros and cons

Having HIV doesnt necessarily mean you will need to go on anti-HIV treatment, known as highly active antiretroviral therapy (HAART)at least, not right away. But, sooner or later, most people with HIV do have to go on treatment. The best time to start varies. Since HAART cant cure HIV infection, starting treatment involves a trade-off: when do the benefits of going on treatment outweigh the benefits of staying off? The benefits of successful treatment include:
Sooner or later, most people with HIV do have to go on treatment.
Controlling the virus: HAART reduces HIVs ability to make copies of itself (see page 131132). It forces the virus down to extremely low levels and partly protects the body from the ongoing effects of infection and immune system activation. Immune system restoration: people on HAART usually see significant increases in their CD4+ cell counts. This means a stronger immune system thats better able to fight off infections (see Chapter 9, Monitoring your health). Slowing or reversing disease progression: as the immune system strengthens, the risk of life-threatening infections drops, and many of the other, less serious symptoms of HIV infection diminish or disappear (see Chapter 12, HIV-related infections and cancers). If that all seems a bit abstract, lets be blunt. Left untreated, HIV can kill you. Treatment can save your life. We often tiptoe around that frightening fact, but sometimes its best to look it in the face. Naturally, when making decisions about treatment, the benefits, or pros have to be weighed against the potential problems, or cons. These include: side effects and toxicities, both short term and long term; the difficulty of adherence: sticking to a drug schedule for the rest of your life. An important question for people with HIV is this: when should you start treatment so that you have good health and long-term quality of life? There is no single answerbut thats a far cry from saying nobody knows. The experience of hundreds of thousands of HIV-positive people has been carefully evaluated.
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This has given us guidelines to help guide treatment decisions. These guidelines provide answers to many questions, while allowing for more give and take in other areas. They also change as our knowledge grows. In this chapter, we will walk you through the biggest questions of anti-HIV therapythe when, what and how of treatment. Since treatment changes rapidly, with new drugs and new information constantly becoming available, this chapter is only meant as a starting point. Treatment decisions will always have to be made with your doctor and healthcare team, using the best and most up-to-date information.
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Treatment decisions will always have to be made

Where do treatment guidelines come from?
Groups of experts from around the world meet regularly to agree on recommendations for the use of HIV treatments. The treatment guidelines are long, comprehensive documents that incorporate evidence from hundreds of studies. They include the most up-to-date answers to treatment questions like when to start, what to take and when to switch. If you have Internet access, you can review the most recent HIV treatment guidelines at these websites: www.aidsinfo.nih.gov (U.S. Department of Health and Human ServicesDHHS). Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. www.cfenet.ubc.ca (British Columbia Centre for Excellence in HIV/AIDS). Therapeutic guidelines: Antiretroviral therapy for HIV-1infected adults. www.bhiva.org (British HIV Association). Treatment of HIV-1 infected adults with antiretroviral therapy. www.eacs.eu (The European AIDS Clinical Society). Guidelines for the clinical management and treatment of HIV-infected adults in Europe. www.msss.gouv.qc.ca/sujets/prob_sante/itss/index.php?aid=132 (Le ministre de la Sant et des Services sociaux du Qubec) La thrapie antirtrovirale pour les adultes infects par le VIH Guide pour les professionnels de la sant du Qubec (available in French only).
with your doctor and healthcare team, using the best and most up-to-date information.
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Before you start

There are many things to consider before deciding to start HIV treatment. Once you start HAART, you will be taking it for a very long time, probably the rest of your life. Spending the time to think some things through before you start can better your chances of success. First of all, assess your overall health. Have you had any HIV-related illnesses, such as Pneumocystis pneumonia (see Chapter 12, HIV-related infections and cancers)? Have you had infections that keep coming back? Have you had
Once you start HAART, you will be taking it for a very long time, probably the rest of your life. Spending the time to think some things through before you start can better your chances of success.
ongoing symptoms like chronic fatigue, weight loss, skin problems or diarrhea? If any of these are true, you may not be able to waitthese problems could signal a need to get on treatment right away. See When to start on page 130. Health conditions that are not related to HIV can influence your treatment decisions, leading you to decide to start treatment earlier than you otherwise would have, or to postpone treatment. For example, if you are pregnant, you may need to start treatment to reduce the chance your baby will have HIV. If youre depressed or using recreational drugs or alcohol a lot, you might have trouble sticking to a strict medication schedule. In this case, it may be better for your health to postpone HIV treatment until you have your mental health and/or substance use issues cleared up. Everyone with HIV should have a thorough, head-to-toe checkup and medical history review to catch everything that might be relevant. Keep track of your CD4+ cell count and your viral load (see Chapter 9, Monitoring your health). Unless your CD4+ cell count is already extremely low, its better to make decisions based on trends rather than the results of a single test. Have your CD4+ cell counts been falling? Is your viral load high or has it recently increased significantly? If so, you might need treatment sooner rather than later. Consider how you feel about anti-HIV drugs. Some people have strong feelings of scepticism, fear or distaste about taking them. They may feel that taking anti-HIV drugs every day is a constant reminder of living with HIV. Its important to discuss such feelings with your doctor and work through them. If youre looking at each pill thinking, I dont want to take this, thats a difficult emotional situation to be living with every dayand a set-up for poor adherence and treatment failure.
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Think about the practical impact that treatment could have on your life. Consider when and where you might have to take your drugs, such as on vacation, at work, on the street, across the border or out socializing. If there are going to be any issues, its better to think them through beforehand. Youll definitely want to consider possible side effects. Not everyone will have significant side effects; for some they may be short-lived, mild or barely noticeable. However, for many others, side effects may be much more severe (see Chapter 11, Side effects and symptoms). Nobody wants to live with side effects but, realistically, they may be something you have to deal with. Decide where youre willing to draw the line. Remembering that HIV endangers your life, what are you willing to put up with in exchange for that? Side effects vary with specific treatments, so this may mean some practical trade-offs: would you rather risk diarrhea or sleeping poorly? Higher cholesterol or visibly losing fat? With luck, you may not encounter any of these things, but its important for you to know what side effects you may have and to prepare yourself, emotionally and practically, to deal with them. Try to learn as much as you can about side effects and how to cope with them before making treatment choices. Chapter 11 (Side effects and symptoms) explains many ways to help prevent or lessen side effects. By considering these issues before starting treatment, you will give yourself the best chance of not just living longer with HIV, but living well.
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Try to learn as much as you can about side effects and how to cope with them before making treatment choices.
Treatment-related definitions
Side effects refers to an unintended reaction to a drug. A drug interaction occurs when two or more drugs increase or decrease each others levels in your bloodstream. This may result in side effects, or in the drug becoming ineffective. Drug toxicity happens when the level of drug in your bloodstream is too high, which may also result in unwanted side effects.
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When to start?
Deciding when to start drug treatment is often one of the toughest choices a person with HIV has to make. This decision means choosing the best margin of safety: at what point does your HIV infection pose more risk than treatment does? The answer to that is based on: your medical health history (that is, how long youve been infected, your symptoms, co-infections and illnesses); your CD4+ cell count;
Deciding when to start drug treatment is often one of the toughest choices a person with HIV has to make.
your HIV viral load; whether you are pregnant or thinking about pregnancy; the emerging understanding of the early and ongoing impact of HIV on our body. Treatment should definitely be started if: You have had serious symptoms or illness (symptomatic infection) related to HIV infection, regardless of your CD4+ cell count or anything else, see Chapter 12 (HIV-related infections and cancers). Even if youve recovered, you may be at immediate risk of getting seriously sick again without treatment. Your CD4+ cell counts are very low. (As we learn more, guidelines can
Even during the phase of HIV disease that we call asymptomatic, HIV is creating an ongoing process of inflammation in our bodies, particularly in the gut, brain and heart, which has a negative effect on our health.
change on how low CD4+ cell counts can safely fall before starting treatment is recommended. Make sure you consult the most up-todate information.) You are pregnant, to prevent transmitting HIV to your baby. This is regardless of your CD+ cell count or your viral load. Usually once you start anti-HIV drugs, you continue for the rest of your life. In pregnancy, women with HIV may use anti-HIV drugs just during their pregnancy and then stop after the baby is born (see Chapter 15, HIV and women). Getting on treatment immediately will let your immune system rebuild itself until youre no longer in immediate danger of infections. If you have not had any HIV-related symptoms (that is, you are asymptomatic), your viral load is low, your CD4+ cell counts are high and your overall health is good, you and your doctor may decide to postpone starting treatment. Your own readiness to start treatment will be crucial as well.
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For people who have not experienced serious symptoms or illnesses related to HIV and who have a relatively high CD4+ cell count, expert opinion on the best time to start treatment has swung back and forth. Ongoing studies keep tracking which treatment choices (starting earlier or starting later) lead to the best long-term outcomes. This means weighing the long-term effects of treatment against the effects of having HIV for a long timesomething that is not always easy to analyze. As research reveals more about HIV, we are coming to understand that even during the phase of HIV disease that we call asymptomatic, HIV is creating an ongoing process of inflammation in our bodies, particularly in the gut, brain and heart, which has a negative effect on our health. Its important to get the most up-to-date information, and to discuss the issue of when to start treatment carefully with your doctor. Delaying treatment may call for more frequent testing of viral load and CD4+ cell counts to watch for emerging trends.
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When HIV infects a cell in your body, it takes control of that cell.
Anti-HIV drugs: the building blocks of treatment

Because HIV is a type of virus called a retrovirus, anti-HIV drugs are also called antiretroviral drugs or just antiretrovirals. In order to explain how anti-HIV drugs work, we need to first tell you some information about HIV. When HIV infects a cell in your body, it takes control of that cell (see next page). HIV then forces the cell to make many more copies of the virus. This replication of HIVcalled the HIV life cycleis a step-by-step process, like an assembly line in a factory. AntiHIV drugs are designed to interfere with different steps in that replication process.
HIV then forces the cell to make many more copies of the virus. AntiHIV drugs are designed to interfere with different steps in the replication process. There are four main stages in the viral life cycle.
The HIV life cycle and classes of anti-HIV drugs

The viral life cycle is the process by which HIV makes copies of itself. There are four main stages in the viral life cycle: 1. HIV enters a cell; 2. HIV takes control of the cell;
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3. HIV becomes part of the infected cell; 4. HIV tricks the infected cell into making copies of itself. There are several different classes (or groups) of anti-HIV drugs: each class works by interfering with a specific step of the cycle.
1. HIV enters a cell Different cells in your body have different molecules or receptors on their surfaces. These molecules identify the cells like fingerprints. CD4+ cells get their name from the CD4 receptors that are sprinkled over their outer surface. HIV also has certain specific molecules on its outer surface. These proteins fit perfectly onto the CD4 receptors. This allows HIV to attach itself to the cell like a key fitting into a lock. HIV also needs to lock onto one or more co-receptors besides CD4. Once HIV is attached to both CD4 and the co-receptor, the virus can fuse with the cell and get inside. Its as though there are two locks on the door, and HIV has the key to both of them. Anti-HIV drugs in the classes called entry inhibitors and fusion inhibitors prevent HIV from getting inside cells.
2. HIV takes control of the cell Two molecules called RNA and DNA are essential for every living thing. These molecules work like master instruction manuals: they tell a living cell how to build everything it needs to build and how to do everything it needs to do. The genes that you were born with are made of DNA that explains how to make everything from your fingernails to your blood cells. HIV has its own genes, made of RNA. RNA is similar to but not exactly the same as the DNA that makes up human genes. Once inside a human cell, HIV has to convert its RNA into DNA before it can do anything else. HIV brings along a molecule called reverse transcriptase, which converts the viral RNA into DNA. After this conversion, the genetic material of the virus matches the genetic material of the cell. Anti-HIV drugs called reverse transcriptase inhibitors slow down or stop the action of the reverse transcriptase enzyme. There are two classes of anti-
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HIV drugs that slow down this enzyme: nukes or nucleoside analogue reverse transcriptase inhibitors (also called NRTIs); non-nukes or non-nucleoside analogue reverse transcriptase inhibitors (also called NNRTIs). The nukes were the first drugs approved to treat HIV, and they continue to be a major part of most drug regimens. The non-nukes were developed later than the nukes. Due to their powerful ability to suppress HIV, they have also become an important part of many treatment combinations.
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3. HIV becomes part of the infected cell In the cells nucleus, genes made of DNA contain all the instructions for the day-to-day running of the cell. The cell follows the instructions that come from this DNA. HIV takes advantage of this for its own purposes. It inserts its own viral DNA (which was made in the previous step) into the cells DNA moleculeslike adding a few new beads to a necklace. The virus uses an enzyme called integrase to make this insertion. Anti-HIV drugs in the class called integrase inhibitors can be used to interfere with integrase, preventing the viral DNA from being inserted into the cells own DNA.
4. HIV tricks the infected cell into making copies of itself At this point, the infected cell cant tell the difference between the viral DNA and its own. It is now programmed to produce new viruses when the cell becomes activated. CD4+ cells can remain infected but inactive for long periods of time. This is one of the challenges to finding a permanent cure for HIV infection. Once the infected CD4+ cell is activated, which happens if it is called upon to respond to an infection, it will start making copies of itself and eventually releasing new virus. There are still a few steps needed to complete the process of making new virus particles or HIV virions. First, the cell makes long chains of HIV proteins. These long molecules contain all the various pieces of the new HIV virions, but not put together in the proper way. An HIV enzyme called protease then works like scissors to cut these chains into the correct smaller pieces. These newly
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cut pieces are assembled by the cell into new HIV virions. Finally, the new HIV virions leave the infected cell, in a process called budding, and can go on to infect other cells. Protease inhibitors are the class of anti-HIV drugs that interfere with the action of the HIV enzyme called protease. They prevent the protease enzyme from cutting the long chains of new HIV proteins. This results in defective HIV that cannot infect new cells. Protease inhibitors have a very powerful ability to suppress the virus and are an important part of many drug combinations.
In order to effectively treat HIV you have to take a combination of anti-HIV drugs from different classes. Such combinations are called highly active antiretroviral therapy or HAART.
Putting it together: HAART combinations

In order to effectively treat HIV you have to take a combination of anti-HIV drugs from different classes. Such combinations are called highly active antiretroviral therapy or HAART. They are also sometimes called ART (antiretroviral therapy) or CART (combination antiretroviral therapy.) At present, there are five different classes of drugs approved in most of the world, including Canada: nukes; non-nukes; protease inhibitors; entry and fusion inhibitors; integrase inhibitors. Each of these classes inhibits the HIV life cycle differently as described in the section above. Drug names and the names of drug classes can be wordy and confusing.
There is no single best combination of drugs that overshadows all the rest. The goal is to pick a combination that will work as well as possible for you.
It does take a little getting used to, but dont let it throw you too much. You may end up sounding like an expert, but if not, dont forget that your treatment wont stop working just because you forget exactly what reverse transcriptase means.
Choosing treatment: what to use?

There is no single best combination of drugs that overshadows all the rest. Instead, there are a number of desirable things to look for. The goal is to pick a combination that will work as well as possible for you; there may be more than
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one of these. The most important things to look for in a drug combination are: efficacyhow well does it work? A treatment combination should lower viral load as much and as quickly as possible, with the greatest increases in CD4+ cell counts; durabilityhow long has it been proven to work? The effects should be sustained over the longest possible time; tolerabilityhow easy is it to take? Side effects, both short term and long term, should be as tolerable as possible, and the dosing schedule should be easy to live with. There are other questions to consider, as well. For instance, what are your prospects for treatment choices later on? HIV can develop resistance to drugs, especially if they arent taken correctly or if the doses are too low because of poor absorption. Could the drugs in your combination lead to resistance patterns that would make effective second- and third-line combinations harder to find? Your doctor will pay great attention to such questions and well talk about this issue in the Making it Work section, on page 137. It is also important to know if the drugs in your HAART combination interact with any other drugs you are taking now or may need to take in the foreseeable future. Well discuss this later on page 138. If you are pregnant or thinking about becoming pregnant, this could also impact your treatment choices. Given all of these questions, and the dozens of anti-HIV drugs available, the possibilities might seem mind-boggling. Fortunately, thats not quite the case. While new drugs, strategies and combinations are being investigated all the time, there are several preferred combinations that have performed well over years of study. Many alternative combinations are available as well.
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There are several preferred combinations that have performed well over years of study.
Starting treatment: first-line treatments

First-line treatments refer to the combinations of anti-HIV drugs that are usually taken by people who are starting treatment for the first time. First-line treatments are well studied and have a proven track record for people starting
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HAART. Your doctor will likely perform a drug resistance test to help decide which combination will work best for you. Currently, three classes of anti-HIV drugs are most often used in first-line treatments: nukes, non-nukes and protease inhibitors. The other classes of drugs are generally only used by people who have already taken treatment and/or are resistant to some of the drugs in firstline treatments. However, this may change in the future. At the time of writing, the standard first-line treatment combinations consist of two nukes, plus either a protease inhibitor or a non-nuke. These are sometimes referred to as protease inhibitor-based and non-nuke-based therapy, respectively.
Three classes of anti-HIV drugs are most often used in first-line treatments: nukes, non-nukes and protease inhibitors.
Protease inhibitor-based therapy

The protease inhibitor/two-nuke combination is the oldest version of HAART, and the one for which we have the most long-term research data. The power of protease inhibitor-based therapy as a treatment combination is well proven. However, most currently available protease inhibitors have possible side effects, and many are subject to a wide range of drug interactions (see page 138). Protease inhibitor-based combinations almost always include a small dose of ritonavir (Norvir). The ritonavir works to boost the levels of the other protease inhibitors in the combination, without having to take a larger dose. This approach is called boosted protease inhibitor therapy. For information about the side effects of protease inhibitor-based therapy (see Chapter 11, Side effects and symptoms).
Non-nuke-based therapy
Non-nuke-based regimens use two nukes plus one non-nuke. In clinical trials, protease-inhibitor-based and non-nuke-based combinations have both proven to be very effective and durable (that is, they can keep HIV suppressed for many years). For information about the side effects of non-nuke-based therapy, see Chapter 11, Side effects and symptoms.
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Once-daily therapy
Very few people actually like taking pills. Since effective anti-HIV drugs first became available, there has been a push to find combinations that require fewer pills, fewer times per daypreferably, once-daily drug combinations. The danger here lies in putting the cart before the horse: more convenient does not necessarily mean better, and any once-daily combination also has to be proven effective and durable. Recently, several such options have become available. For obvious reasons, most people living with HIV greatly prefer these once-daily combinations. There is also evidence that once-daily combinations make adherence easier, and thus may be more effective in the long term. However, there are some potential drawbacks that may be less obvious. If you are only taking drugs once a day, skipping even one dose means there could be inadequate amounts of the drug in your bloodstream for quite a lengthy period. This could increase the chance of developing drug resistance. The trade-off, therefore, is that while once-daily therapy may be easier, adherence also becomes even more important.
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Sticking to your pill-taking schedule (this is called adherence) is very important: even missing pills occasionally could sabotage your long-term success in using anti-HIV drugs.
Making it work: aiming for long-term success

Resistance and adherence
No matter which drugs you end up taking, there is one crucial rule: the pills only work when you take them. Duh, you say, but remembering to take your pills at the right times every day isnt always easy. And sticking to your pill-taking schedule (this is called adherence) is very important: even missing pills occasionally could sabotage your long-term success in using these anti-HIV drugs. This may set off all sorts of alarm bells for you. Some people dont take kindly to being told what to do, even (or especially!) when theyre told its for your own good. Others may feel that the whole idea of adherence is very challenging or overwhelming and will take some getting used to. But this isnt just an exercise in finger-waggingadherence is crucial if the drugs are going to work.
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Pill-popping schedules and correct doses are designed to keep enough drugs in your bloodstream to keep the virus suppressed. Missing doses means that drug levels may, at least temporarily, drop too low to keep the virus under control and HIV can make more copies that will go on to infect new cells. In the short run, this may not be a disasterthe next drug dose will probably knock the virus back down under control. The real danger is drug resistance. If the virus keeps making copies of itself while exposed to those low drug levels, it will eventually figure out how to make copies of itself even at the proper doses. Then your drugs will no longer work for you. Your viral load will go back up and
If the virus keeps making copies of itself while exposed to low drug levels, it will eventually figure out how to make copies of itself even at the proper doses. Then your drugs will no longer work for you.
your CD4+ cell count will start to fall, even if you keep taking the drugs. Then, youll need to find a new combination that will be effective against the resistant virus. That may not be impossible, but its trickier than just staying with a combination that already works. So, thats why you may sometimes feel like youre being lectured about adherence. Missing the occasional dose is not the end of the world (lets face it; thered be little hope for any of us if that were true). But youll keep your drug combination working as long as possible by sticking to your combination as best you can. If you are having difficulties remembering to take your drugs as they were prescribed, its important to get help. Sometimes people have underlying problems, such as depression or substance use, that may affect their adherence. Dealing with these underlying issues can help to improve adherence. Your doctor and pharmacist may have practical tips to help with adherence, so be sure to discuss this with them before starting your pills, or if you experience any challenges in
Youll keep your drug combination working as long as possible by sticking to your regimen as best you can.
taking your pills regularly. If you are at a point in your life, for whatever reason, where you are not able to take your pills regularly and as prescribed, you should take a clear look at exactly whats giving you trouble. Solving adherence problems is a very individual matter. Your pharmacist, clinic nurse or even friends who are also HIVpositive can often help you work out strategies. In spite of the importance of your anti-HIV combination in keeping you healthy, perhaps you are not ready to be taking HAART until you get some things in your life sorted out, like your housing situation or substance use issues. Talk to your doctor and perhaps you
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can find a combination that is more forgiving and easier for you to take. While it does take some getting used to, drug adherence should eventually become as routine as brushing your teeth.
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Drug interactions
A drug interaction occurs when you are taking a combination of drugs and one drug affects how the others are absorbed, broken down, or flushed out of the body. When choosing the drugs that will make up your HAART combination, its important to look at the possibility of drug interactions. Drug interactions can greatly affect the levels of drugs in the body. Too-high drug levels can lead to increased (sometimes dangerous) side effects. If levels are too low, the drugs will not work properly. With anti-HIV drugs, this can lead to the drug resistance you take such pains to avoid: you dont want your near-perfect adherence sabotaged by an unexpected drug interaction. Complex drug interactions are just one more reason you need expert medical care. An experienced doctor and pharmacist should be able to plan your treatment so you dont run into this trouble. Your part of the bargain will be to make sure your doctor and pharmacist are aware of everything youre takingprescription drugs, over-the-counter medications, herbal and nutritional supplements, and even recreational drugs. Most drug interactions can be anticipated and dealt with safely. See CATIEs A Practical Guide to HAART for more information.
Your doctor and pharmacist may have practical tips to help with adherence, so be sure to discuss this with them before starting your pills, or if you experience any challenges in taking your pills regularly.
Changing treatment: after first-line therapy, what next?

Even with the best planning, you may find you have to change your drug combination. Maybe the combination is not working to control HIV (so your viral load doesnt stay undetectable), or maybe it doesnt work for you because of difficulties with adherence (see above).
While it does take some getting used to, drug adherence should eventually become as routine as brushing your teeth.
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Changing because of side effects

Sometimes your treatments seem to be working just fine: your viral load is staying undetectable, and your CD4+ cell counts are climbing. Yet despite the good numbers, you find the side effects are too hard to take, and they are just not going away. In that case, its important to talk to your doctor to find out exactly what is causing the side effects you are experiencing. If you and your doctor determine that your drugs are causing the side effects, you have two options: find some
Even with the best planning, you may find you have to change your drug combination.
way to control the side effects, or switch off the drug(s) causing them. Many side effects can be dealt with. See Chapter 11, Side effects and symptoms, for a preliminary discussion of how to manage side effects and symptoms. Depending on the side effect, you might consider seeing a naturopathic doctor or nutritionist. By using an integrated approach to HIVcombining the best available drugs with the remedies that help eliminate side effects and other symptomsyou may be able to stay on your drugs happily instead of miserably. If nothing works to make the side effects more bearable, then its time to talk to your doctor about changing your drugs. Your goal is to find a different
If your viral load is still detectable after a reasonable time on therapy (usually about 24 weeks)or if it bounces back up to consistently measurable levels after being undetectablethat indicates your treatment is not working.
combination thats still effective, while avoiding side effects that make you miserable. It isnt usually necessary to change all the drugs in your combination. Often, your doctor can pinpoint the drug responsible for the problems youre experiencing, and change just that one while leaving the others alone.
Changing because of treatment failure

One big reason for changing treatment is treatment failurethat is, your treatment isnt keeping HIV suppressed. Your viral load will tell you this: on successful treatment, viral load should drop to undetectable and stay that way. If your viral load is still detectable after a reasonable time on therapy (usually about 24 weeks)or if it bounces back up to consistently measurable levels after being undetectablethat indicates your treatment is not working. With your doctor, youll need to work out why the treatment failed (was it because of drug resistance or adherence problems?) and which drugs you need to go on next. This decision is more challenging than the choice of your
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first combination. You and your doctor will have to consider which of the original drugs have failed, and which ones will likely work instead. Cross-resistance is a challenge here: when HIV becomes resistant to one drug, it may also be resistant to other drugs in the same class, even if youve never taken them. For example, if youre resistant to efavirenz (Sustiva, and also in the combination pill Atripla), youll likely be resistant to nevirapine (Viramune) as well. Resistance testing can help guide these choices: resistance tests pinpoint which drugs your virus is resistant to, and which ones still have a shot (see Chapter 9, Monitoring your health). The sooner action is taken to switch off a failing treatment, the better. Cross-resistance can worsen the longer you stay on a failing combination, making it harder to find alternatives.
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The sooner action is taken to switch off a failing treatment, the better.
Taking breaks and stopping treatment

One thing everybody wants to know is: once youve started treatment, when can you stop? The reality, since anti-HIV drug treatment does not get rid of or cure HIV infection, is that treatment is pretty much ongoing. That is, you generally cant stop. Many people hoped that drug holidaysmore technically called structured treatment interruptionswould give people with HIV a break from the ongoing demands and side effects of treatment. Unfortunately, large and carefully designed studies of treatment interruptions showed surprising and disappointing results. People who took treatment breaks, even at high CD4+ cell counts, had greater risks of serious, even life-threatening, complications. As a result, treatment interruptions are generally not recommended, except in specific circumstances, for instance, severe drug toxicity, or serious complications due to other illnesses or surgical procedures.
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Resources
Practical Guides for People Living with HIV CATIEs practical guide series contains extensive information about HIV treatments. See: A Practical Guide to HAART for People Living with HIV A Practical Guide to Managing HIV Drug Side Effects Plain and Simple Factsheets on Complementary Therapies Available in multiple languages In-Depth Factsheets on supplements Comprehensive information for people living with HIV and their care providers The Positive Side Health and wellness magazine contains articles about treatment, such as: The importance of being adherent Staying on the road to health Resistance assistance Look under Drug Treatment Strategies in the e-zine index (www.positiveside.ca) TreatmentUpdate and CATIE News News bulletins about cutting-edge developments in HIV research and treatment
Many other relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
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Side effects and symptoms

This chapter is about managing the side effects and symptoms that come with being HIV-positive and taking anti-HIV drugs (HAART). Though some people experience no side effects from their drugs, for most people side effects can range from mild to moderate reactions. In rare cases, reactions may be more serious. They are sometimes temporary and disappear after a few days or weeks. In some cases they dont go away for a long time; sometimes they never go away. They may show up months or even years after starting treatment. HIV disease also produces certain symptoms, some of which are similar to the side effects of HAART. It can be tricky to figure out whether HAART or HIV itself is to blame. Research is revealing that its often a bit of both. However, something you may think is a symptom of HIV disease or a drug side effect may in fact be a signal that something unrelated to HIV is wrong with your bodyan infection, for example. Its important to consult your doctor for a diagnosis.
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CONTENTS
General advice for side effects and symptoms Digestive problems Metabolic problems Bone problems Liver problems Pancreatitis Skin problems Muscle problems Headaches Problems with mental and emotional health Peripheral neuropathy
About the author

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General advice for side effects and symptoms

Just looking at a list of possible side effects from HIV or anti-HIV drugs (HAART) can fill you with panic: is all that going to happen to me? Relax: nobody is going to get all the side effects and symptoms that will be discussed in this chapter. You may feel more prepared for side effects and symptoms if you know about them in advance. Discuss the possible side effects of a drug with your doctor before starting treatment. Once you start treatment, make sure you talk
Make sure you talk to your doctor about side effects or symptoms you are experiencing.
to your doctor about side effects or symptoms you are experiencing. Its helpful to take notes so you can describe them accurately to your doctor. The personal health record on page 317 can assist you with this. Side effects often improve over time. Knowing that can make it easier to stick with a drug until you see whether the side effects really do improve. Remember that many things could be causing the problem you are having. Get a full diagnosis from your doctor. Yes, it could be a drug side effectbut maybe its a problem with what you are eating, or an infection or a result of getting older (see Chapter 18, HIV and aging). There are options for dealing with symptoms and side effects. If the problem isnt too serious, wait and see if it improves on its own. If its clear which drug is causing the side effect, your doctor may decide to switch you to another drug that doesnt cause this side effect. Perhaps it is not a drug that is causing the problem. Maybe it is something else that is causing it. In this case, your doctor will try to diagnose and treat this problem. You and your doctor may be able to find some way to deal with the problem so that you can live with it. Treatments taken to relieve side effectsincluding natural or herbal treatments, and even things like nasal sprayscan sometimes have side effects of their own. They may also interact with the drugs youre already taking. Always ask your doctor, pharmacist or naturopath to check these interactions for you.
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Digestive problems
Problems with your digestive systemwhat doctors refer to as gastrointestinal or GI problemsare among the most common drug-related side effects for people with HIV. HIV disease itself can also cause digestive problems. These problems can include nausea, vomiting, loss of appetite, diarrhea and gas.
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Tips to help settle your stomach

Eat small, frequent meals instead of larger ones. Eat salty snacks (crackers or pretzels) before eating or taking your drugs. Sniff grated lemon peel or drink water with lemon in it just before eating. Chew slowly and eat in a calm, relaxed environment. Eat cool, bland, odourless foods.
Problems with your digestive systemwhat doctors refer to as gastrointestinal or GI problemsare among the most common drugrelated side effects for people with HIV.
Nausea and vomiting

Nauseathat sick-to-your-stomach feeling like you may throw upcan be caused by many drugs, including anti-HIV drugs. It is especially common in the first few weeks after starting new drugs. Nausea caused by anti-HIV drugs will usually lessen or go away over time. The best approach (especially at first) may be to ride out the nausea to see if it improves. Meanwhile, in consultation with your doctor, you might try taking the drug at a different time of day. If your prescription permits it, you can try taking it with food if youve been taking it on an empty stomach, or vice versa. Severe nausea, especially with other symptoms such as fever, needs to be treated immediately by your doctor or through the emergency department of your local hospital. It can be a sign of a serious problem. To treat nausea naturally, try taking ginger in capsules or as a syrup, or make tea from fresh ginger root. You can also drink brands of ginger ale that actually contain a good dose of ginger (usually from health food stores).
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Anti-nausea drugs include over-the-counter remedies like Gravol (dimenhydrinate) as well as more powerful prescription drugs. Always check for possible drug interactions with your doctor or pharmacist.
Loss of appetite
Even if youre not outright nauseous, you may have little interest in food. Causes might include: infections and fever; low levels of hormones, especially testosterone;
Keep tasty snacks around so you can make the most of any moment of appetite.
depression: many people lose interest in eating when theyre depressed; nutrient deficiencies, especially zinc: take a potent multivitamin/mineral for overall micronutrient support. All of these causes of appetite loss can be diagnosed and treated by your doctor. Eating something is better than eating nothing: just do the best you can. Try the tips in the nausea and vomiting section above. Keep tasty snacks around so you can make the most of any moment of appetite. And try to drink lots of fluids and take in lots of protein and calories when youre feeling better, to make up for the times when you dont feel like it. To make sure youre getting enough calories and nutrients, you may need to rely on supplemental drinks, high-quality protein powders such as whey protein, and nutrient-rich foods. Talk to a dietician or nutritionist experienced with HIV for recommendations and practical suggestions. Some substances can act as appetite boosters. Medicinal marijuana can be a powerful appetite stimulant. Obviously, marijuana can leave you feeling stoned, but it may take much less to boost your appetite than it does to make you high. Marinol, a synthetic form of marijuana, can also be used as an appetite stimulant and is available by prescription from your doctor. Megace (megestrol acetate) was widely used in the past but has several serious drawbacks. It can reduce testosterone production, and has been linked to a serious bone condition called avascular necrosis (see page 155). So Megace is not often recommended for people with HIV.
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Marijuana to stimulate your appetite

Smoking marijuana can be hard on your lungs (smoking anything isnt healthy), so some people prefer to bake it into brownies or cookies. Marijuana is also illegal unless you have gone through a special process with the federal government allowing you to use it legally for medical purposes (see Chapter 4, Healthy living).
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Diarrhea
Diarrhea is a symptom of many common conditions such as food poisoning, parasites or intestinal infections. HIV infection affects the intestines and can cause diarrhea. It is also a common side effect of many drugs, including those used to treat HIV. When you are starting a new combination of HAART, diarrhea is often a short-term side effect. While it may get better by itself over time, diarrhea can also signal more serious problems. Diarrhea that is severe or begins suddenly should be reported to your doctor immediately: it may be a sign of an infection that needs to be treated. In people with HIV, diarrhea can have more than one cause. You may not see a great improvement until all of the causes have been identified and dealt with, so try not to get discouraged if you dont succeed at first. Some possible causes of diarrhea that you may be able to manage yourself include: stress; excessive consumption of sugar or caffeine, spicy foods and alcoholtry cutting back; trouble digesting fatcut back on dietary fat and try taking lipase, a fat-digesting enzyme; lactose intolerancecut out or decrease dairy products and take a lactase enzyme when you do eat them. Other treatments include: anti-diarrhea drugs such as Imodium (loperamide) or Lomotil (diphenoxylate/atropine combination); the supplement L-glutamine;
When you are starting a new combination of HAART, diarrhea is often a short-term side effect.
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friendly bacteria supplements, such as acidophilus; calcium supplements. Increasing your soluble fibre intake can help by bulking up your stool and absorbing the excess water. You can get soluble fibre from: peeled apples or apple sauce; other fruits, including bananas, strawberries, apricots, peaches, pears and plums; grains like oatmeal, oat bran, peas, beans and barley; soluble fibre supplements such as psyllium or ground flax seeds.
If your digestive system isnt working properly, undigested food can make it further down into your intestines, where bacteria will feed on it and produce gas.
Make sure youre getting enough calories and liquids and that you stay hydrated. Dont cut down on your liquids in the hope of drying up the floodyou need to replace the water and minerals youre losing.
Basic hydration formula

Mix one cup orange juice with three cups water and half a teaspoon of salt. Take regular sips to help keep yourself hydrated.
Gas
Smelly intestinal gas and abdominal bloating can result from drugs or from other problems. If your digestive system isnt working properly, undigested food can make it further down into your intestines, where bacteria will feed on it and produce gas. Many of the tips for diarrhea may also help with gas. Try taking digestive enzymes or glutamine to help you digest fat, which is often the culprit. Try to identify which foods cause you the most problems and cut down or eliminate them. Some of the worst culprits are dairy products, broccoli, beans, garlic, onions, cabbage and tough-to-digest vegetable skins.
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Metabolic problems: fat redistribution, heart problems and diabetes

People with HIV, including those on HAART, may be at an increased risk of heart problems, including disease of the heart and blood vessels, stroke and erectile dysfunction. Levels of cholesterol and other fats in the blood can be raised, which increases the risk of heart problems. Blood sugar levels can also be higher than normal, increasing the risk of diabetes. There can also be visible changes in the way fat is distributed in the body. This combination of metabolic (body chemistry) changes and fat redistribution is called lipodystrophy.
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Fat redistribution
Changes in the way fat is distributed on your body may include: lipoatrophyfat loss in the face, arms, buttocks and legs; unwanted fat buildup in the breasts and belly, on the back at the base of the neck (buffalo hump) and sometimes as fatty lumps (lipomas) in various parts of the body. These changes may occur separately or together, and may or may not be accompanied by other metabolic abnormalities. Despite a great deal of research, the causes of fat redistribution are not yet fully understood. Many experts believe that the causes include some combination of drug side effects, HIV disease itself, and possibly other factors that are as yet unknown. Unfortunately, stopping drugs doesnt always reverse the problems, although there have been reports of gradual improvements over time in at least some people. Although research into fat redistribution is continuing, there is not a great deal of evidence for strategies for treating it. The drugs d4T (Zerit) and, to a lesser extent, AZT (Retrovir, and also found in the combination pills Combivir and Trizivir), have been linked to loss of fat, particularly in the face, arms and legs. The best strategy to avoid fat redistribution is to avoid drugs associated with it or work with your doctor to see if you can switch off the therapy you are taking at the first sign of this condition. Many combinations, especially for people starting therapy, try to minimize this side effect.
People with HIV, including those on HAART, may be at an increased risk of heart problems. Blood sugar levels can also be higher than normal, increasing the risk of diabetes. There can also be visible changes in the way fat is distributed in the body.
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For people who have lost facial fat, certain kinds of plastic surgery can help fill out sunken cheeks and restore a normal appearance. These involve injections of compounds such as polylactic acid (New-Fill) and polyalkylimide (Bio-Alcamid). The improvements may not be permanent and the cost of the treatments, which usually runs into thousands of dollars, is not covered by provincial coverage plans. In some areas of the body, excess fat can be removed via liposuction (of buffalo humps or lipomas) or surgical reduction (for breast reduction), though the fat sometimes returns over time. Neither approach is possible in the belly because of the high risk of hemorrhage.
The best strategy to avoid fat redistribution is to avoid drugs associated with it.
Research into the causes and treatments of lipodystrophy is ongoing.
Cardiovascular (heart) problems

There are three types of fat in your blood that are monitored to assess your risk for heart problems. These are: triglycerides; low-density or LDL (bad) cholesterol; high-density or HDL (good) cholesterol. If your levels of LDL cholesterol are too high, fatty deposits can build up in the walls of your veins and arteries. This blocks blood flow and greatly increases the risk of stroke and heart attacks. HDL cholesterol has the opposite effect, tending to protect you from heart disease (see Chapter 9, Monitoring your health). The causes of HIV-related heart disease are complex. HIV itself can damage blood vessels, while smoking and poor diet increase the risk. Some anti-HIV drugs, especially some protease inhibitors and efavirenz (Sustiva, and also found in the combination pill Atripla), are known to raise LDL levels and lower HDL levels. Many people with HIV have abnormally high levels of triglycerides and LDL cholesterol, while having low HDL cholesterol levels. If left untreated, this puts them at increased risk of heart attacks and stroke. A heart attack happens when the blood supply to your heart muscles is interrupted. This can damage or kill heart tissue and can be fatal within minutes. A stroke happens when the blood supply to a part of the brain is cut off.
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Warning signs
The warning signs of a heart attack are: uncomfortable pressure, fullness, squeezing or pain in the centre of the chest lasting more than a few minutes; pain or numbness spreading to the shoulders, neck, jaw or arms; chest discomfort with light-headedness, fainting, sweating, nausea or shortness of breath.
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The warning signs of a stroke are: sudden weakness or numbness of the face, arm or leg; sudden dimness or loss of vision, particularly in one eye; loss of speech or trouble talking or understanding speech; sudden, severe headaches with no apparent cause.
Call 911 immediately if you have any of the warning signs of heart attack or stroke.
Tips to lower your risk of heart disease

Many things other than HIV and HAART can affect your risk of heart disease. Things you can do to lower your risk of heart disease and related problems include: cutting down or quitting smoking; keeping blood pressure and stress under control; controlling diabetes, if you have it; eating a healthy diet low in saturated fat and high in fibre; keeping a healthy weight; exercising; controlling your cholesterol levels.
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Drugs such as statins and fibrates can be used to control dangerously high levels of cholesterol and triglycerides in the blood. Some of these drugs can interact with your anti-HIV drugs, so it is important to talk to your family doctor or pharmacist about all the drugs you are taking. Some supplements may help control blood fats, such as: niacin (a B vitamin); carnitine; omega-3 fatty acids, found in fish oils and flax seed oil. Talk to your doctor about supplements that may help you.
Drugs such as statins and fibrates can be used to control dangerously high levels of cholesterol and triglycerides in the blood.
Insulin resistance and diabetes
Your body requires sugar (glucose) for energy. Glucose comes from the digestion of carbohydrates in foods such as fruits, vegetables, cereal, pasta and dairy products. The hormone insulin helps glucose to enter your cells and provide food energy. Insulin resistance happens when your bodys cells do not respond properly to insulin and cannot take up the glucose. As a result, glucose builds up in the blood. The pancreas, which produces insulin, produces more insulin to help move the glucose into your cells. If your body cannot produce enough insulin or the cells do not respond to it properly, the result is hyperglycemia or high blood sugar. This can lead to diabetes mellitus (type 2), a state of persistent high blood sugar. The use of protease inhibitors is linked to insulin resistance in people with HIV. Your doctor will monitor your blood glucose levels closely if you are taking
The use of protease inhibitors is linked to insulin resistance in people with HIV.
protease inhibitors as part of your HAART combination. Managing your blood glucose levels through food and exercise is a good way to prevent or manage insulin resistance. Sometimes your doctor may need to switch your HAART combination to avoid protease inhibitors or prescribe antidiabetic drugs to control your blood glucose levels.
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Bone problems
Thinning bones are a normal part of aging, although this usually happens very slowly. In people with HIV, however, thinning bones may happen earlier in life as a result of anti-HIV drugs or nutritional deficiencies that can be caused by HIV disease itself. Research suggests that more than one-third of people with HIV may have very early-stage bone loss. Osteopenia is the earlier, less severe, form of bone loss. If it continues to the more advanced stage, called osteoporosis, your bones become porous, brittle and can break very easilyparticularly at the hip, wrist and spine. Nutrient deficiencies are a major cause of loss of bone density. Diets low in calcium and vitamin D can speed up bone thinning. These deficiencies can happen in people with HIV because HIV affects the digestive system, resulting in poor absorption of food and the nutrients it supplies to our bodies. It is very important to ensure that you are getting enough calcium and vitamin D from your diet or by taking supplements. Talk to your doctor, pharmacist or a nutritionist knowledgeable about HIV disease about how to prevent or slow down bone thinning. Among people with HIV, the biggest risk factors for bone loss, aside from nutrient deficiencies, are age, living with HIV for a long time, low body weight, low CD4+ cell counts and smoking. Unlike the HIV-negative population, where women are most affected, HIV-positive men are at risk for bone loss as well. Studies do not agree whether or not HAART is to blame for bone loss. Currently, most doctors would argue that since HIV itself worsens bone loss, HAART does more good than harm for your bones. Since bone loss is painless, you may have no idea its happening until you break a bone. You need a bone scan to diagnose bone thinning A baseline scan (done before you start HAART) can then be compared to later readings (see Chapter 9, Monitoring your health).
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Thinning bones may happen earlier in life as a result of anti-HIV drugs or nutritional deficiencies that can be caused by HIV disease itself. It is very important to ensure that you are getting enough calcium and vitamin D from your diet or by taking supplements.
Bone death: avascular necrosis

Avascular necrosis is a rare but serious condition in which the blood supply to the bone gets cut off, causing the bone tissue to die. This usually happens in the hip joint, but can also happen in the shoulder, knee or hand.
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The causes of avascular necrosis arent fully understood. Possible risk factors may include: long-term use of corticosteroid drugs; high cortisol levels (cortisol is a hormone produced by the body); high levels of blood fats, especially triglycerides; heavy alcohol use; bone injuries or infections; testosterone injections; scuba diving. Unlike osteopenia and osteoporosis, which often cause no noticeable symptoms, avascular necrosis causes symptoms, including: stiffness or aching in the hip area; decreased ability to move the joint; pain in the hip joint or groin area, which may radiate down the leg to the knee. If you have any of these symptoms, get a comprehensive physical exam including a bone scan. If avascular necrosis is detected early enough, small holes can sometimes be drilled in the bone to relieve the pressure on the bone marrow and increase blood flow, allowing new blood vessels to grow. This may reduce pain and slow the problem. However, there are no procedures to permanently delay bone death once it has started. If it has progressed too far in the hip joint, the only thing that works is hip replacement. If you are at risk for avascular necrosis, you might want to avoid activities that put pressure on the hip joint, such as: some weight-lifting exercises (talk to an expert physical trainer to find out which exercises to avoid not all of them are bad); squats; running on a hard surface; carrying heavy weight on your shoulders.
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Liver problems
Your liver processes most things you put into your body. Although it can handle a lot of toxins (like alcohol), your liver can start to break down when its under too much strain. The most frequent causes of liver damage in people with HIV are: excessive alcohol and recreational drug use; co-infection with hepatitis viruses; medications and herbal supplements that are processed by the liver. The health of your liver is usually assessed by liver enzyme tests (see, Chapter 9, Monitoring your health). You should be getting your liver enzymes monitored regularly, especially if you are on HAART or have existing liver damage (for instance, due to hepatitis C). Severe liver damage can cause abdominal pain, swelling of the abdominal area, fever and jaundice (yellowing of the skin and/or eyes). Try to eliminate as many sources of toxicity as possible. This includes: cutting down or eliminating recreational drugs and alcohol; getting vaccinated against hepatitis A and B; avoiding infection with hepatitis C by not sharing needles and drug use equipment and by not having unprotected sex (see Chapter 4, Healthy living, Chapter 7, Your sexual health, and Chapter 12, HIV-related infections and cancers). If you are infected with hepatitis C, consider getting treament; cutting down consumption of junk foods, soft drinks and caffeine (coffee and cola); eating less saturated fat; talking to your doctor, pharmacist or naturopath to make sure youre not taking medications or supplements (such as certain herbs) that might make your liver problems worse. Certain nutrients can also help to support and protect the liver. These include N-acetyl cysteine and the supplement carnitine. As with all supplements, you should carefully check with your pharmacist or doctor for possible interactions with your anti-HIV drugs. If there is any indication of liver damage, you should be checked for hepatitis or any other possible infections that can damage the liver.
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Although it can handle a lot of toxins (like alcohol), your liver can start to break down when its under too much strain.
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Love your liver

Follow these tips to help keep your liver in good working order. Try to avoid alcohol altogether if you have liver disease (hepatitis). Make sure that you are vaccinated against hepatitis A and B. Achieve and maintain a healthy body weight. Maintain generous stores of lean body mass (muscle tissue). Get enough protein. Choose more whole grains, whole fruits and vegetables. Eat a moderate amount of dietary fat and emphasize good fats. Take a multivitamin to prevent deficiencies. Do not take iron supplements unless prescribed by your doctor to treat an iron deficiency. Supply extra antioxidants to the body. Talk to your naturopath and liver specialist about supplements such as milk thistle (silymarin) and S-adenosyl methionine (SAMe), which are being studied for their effects on the liver and other health problems.
High levels of triglycerides in the blood can put people with HIV at increased risk for pancreatitis.
Pancreatitis
Pancreatitis is an inflammation of the pancreas, the organ that secretes digestive enzymes and insulin. Pancreatitis can cause: severe nausea; vomiting; severe abdominal pain. High levels of triglycerides in the blood can put people with HIV at increased risk for pancreatitis. Pancreatitis can also be caused by some anti-HIV drugs, including ddI (Videx) and d4T (Zerit). If these symptoms persist, contact your doctor
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Skin problems
HAART drugs can cause skin problems, including rash, dryness and itchiness. More rare is a severe skin rash, which can be a sign of a dangerous reaction to your drugs. Rashes can be caused by nevirapine (Viramune), delavirdine (Rescriptor), efavirenz (Sustiva, and also found in the combination pill Atripla), nelfinavir (Viracept), abacavir (Ziagen, and also found in the combination pills Trizivir and Kivexa) and etravirine (Intelence). The antibiotic combination trimethoprim and sulfamethoxazole (Septra, Bactrim) can also cause rash and sensitivity to sunlight. Most of the time, skin rashes caused by drugs are mild and disappear after a couple of weeks. However, rashes can sometimes be a sign of a much more serious reaction (hypersensitivity). Drug hypersensitivity includes the following symptoms: severe rash; flu-like symptoms such as fever, aches, pains, tiredness and headache; muscle or joint aches and pains; nausea, vomiting and diarrhea; breathing problems such as difficulty breathing, sore throat and cough. Talk to your doctor immediately if you get a rash while taking any anti-HIV drugs, especially if you have recently started or changed your combination. If your doctor is not available, go to an emergency department. In general, the only solution for severe skin reactions is to stop taking the drug that is causing it. When a rash is not too severe, it may gradually go away after a few weeks on the drug. Sometimes your doctor will prescribe a corticosteroid skin cream that will suppress the reaction. These are only recommended for short-term use. Naturopaths have found that essential fatty acid supplements like borage and flaxseed oils can often help promote skin health. You can also take a potent multivitamin and mineral to provide the vitamin E, vitamin A, zinc and B vitamins needed for overall skin health. Drink plenty of water and fluids. Try non-perfumed moisturizing creams and oatmeal baths and avoid harsh, antibacterial or highly scented soaps. You can sunburn more easily if youre taking certain drugs such as Septra or Bactrim, so avoid prolonged exposure to direct sunlight and use sunscreen.
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Talk to your doctor immediately if you get a rash while taking any anti-HIV drugs.
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Abacavir hypersensitivity
A severe hypersensitivity reaction can be caused by abacavir (Ziagen or in the combination tablets Trizivir and Kivexa). This reaction can include fever, rash, nausea and vomiting, shortness of breath, tiredness and muscle pain. It usually happens within the first six weeks of starting the drug, but (more rarely) it may begin later. This reaction is not common but can be serious if left untreated. A simple blood test that your doctor will perform before you start taking abacavir will determine if you are at risk. If you are positive for this test, your doctor will not use abacavir. If you experience a hypersensitivity reaction to abacavir, you should never take the drug again.
Muscle problems
People with HIV can develop muscle problems, including muscle aches and pains (myalgia), joint pain (arthralgia), cramps and weak muscle tissue (myopathy) that can result in tiredness. Sometimes muscle pains are caused by nutrient deficiencies. Lack of
People with HIV can develop muscle problems, including muscle aches and pains (myalgia), joint pain (arthralgia), cramps and weak muscle tissue (myopathy) that can result in tiredness.
magnesium may be a factor, especially in muscle cramping. A deficiency of L-carnitine can occur in people with HIV and this can cause muscle damage. In such cases, supplements can help. In rare cases d4T (Zerit) and lipid (fat)lowering drugs called statins can cause muscle problems. Rare serious problems related to the brain or central nervous system can make it hard to control your muscle movements. Talk to your doctor if any muscle problems develop and find out what is causing them. Severe problems may need immediate attention. For milder problems, there are some things you can do on your own to deal with the discomfort. Aspirin (ASA) and other over-the-counter pain medicines such as Tylenol (acetaminophen) may help muscle aches and pains, but they dont really solve muscle problems. Make sure you dont exceed the recommended dosage and dont take pain relievers over extended periods of time.
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You can also try: Epsom salt baths: mix about three cups of Epsom salts into a hot bath; acupuncture and/or massage therapy; chiropractic adjustments.
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Lactic acidosis
Your muscles naturally release lactic acid as a waste productthats the muscle burn you feel after working out. Much more rarely, lactic acid can build up to dangerous levels in the blooda condition known as lactic acidosis. This has been seen in people on the anti-HIV drugs called nukes (see Chapter 10, Treatments). Lactic acidosis can cause a wide range of symptoms including: unexpected tiredness; nausea; vomiting; abdominal pain; unexplained weight loss; shortness of breath or difficulty breathing. Some of the symptoms of lactic acidosis are so common that they can be hard to interpret. (Who hasnt felt tired or nauseated?) The usual rule applies: better safe than sorry. Get immediate medical attention if you have any signs of lactic acidosis. It can be fatal if left untreated.
If you have a headache that is severe, lasts for more than a few hours, or that recurs, get a thorough diagnosis from your doctor as soon as possible.
Headaches
Headaches can be a side effect of HAART or other drugs, or a sign of an infection or another problem. If you have a headache that is severe, lasts for more than a few hours, or that recurs, get a thorough diagnosis from your doctor as soon as possible. It is best to not treat such headaches until your doctor has diagnosed the problem and told you what treatment is best. Covering up the symptom with pain relievers might mean that your doctor will miss something serious. Good old Aspirin (ASA) or buffered Aspirin is often the best choice for reducing headache pain. In general, only use Aspirin or other pain relievers
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when you absolutely need them. Use them according to directions and avoid long-term use, which can be damaging to the liver and kidneys, Other possibilities for treating and preventing some kinds of headaches include acupuncture or acupressure (see Chapter 5, Complementary and alternative therapies).
Anxiety, depression, nervousness, dizziness, problems with falling asleep and nightmares are all possible side effects of certain anti-HIV drugs.
Problems with mental and emotional health

Anxiety, depression, nervousness, dizziness, problems with falling asleep and nightmares are all possible side effects of certain anti-HIV drugs. Collectively, these symptoms are known as CNS side effects because they affect the central nervous system or CNSthe brain and spinal cord. The symptoms described above can be caused by efavirenz (Sustiva, and also found in the combination pill Atripla). They can occur both during the day (including muddled or unfocused thinking, feelings of paranoia and disorientation, depression) and night (insomnia and, when you get to sleep, vivid dreams and nightmares). If efavirenz is causing insomnia, talk to your doctor or nurse about taking it in the morning instead of at bedtime. Some people who take efavirenz may become depressed, anxious or even have suicidal thoughts. If you are tak-
If you experience a sudden unexplained change in your thoughts or feelings, if you have dizziness, trouble concentrating, or have trouble co-ordinating your movements, see your doctor immediately.
ing efavirenz and have feelings like this, speak to your doctor about it. Other drugs, such as ribavirin and interferon used in the treatment of hepatitis C, may cause CNS symptoms as well, although not as frequently. If you experience a sudden unexplained change in your thoughts or feelings, if you have dizziness, trouble concentrating, or have trouble co-ordinating your movements, see your doctor immediately. These could be signs of a CNS infection that requires immediate treatment. In many people with HIV, these side effects of the central nervous system disappear gradually after several weeks, so if they are not too severe, try to tough it out for at least a month. If the problems continue, stopping the drug may be the only solution. It is best to avoid recreational drugs, including alcohol, when starting efavirenz.
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Dont overlook other causes of stress, depression or anxiety that are not related to the side effects of your drugs. Changes in your thoughts or feelings that occur over a period of time may be a sign of a mental health problem such as depression or anxiety. Therapy with a good mental health therapist can help in these cases (see Chapter 6, Your emotional health).
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Tips to help you sleep better

With sleep-related problems, there are different approaches you can try, including: avoiding caffeine, sugar, alcohol and nicotine for four to six hours before bedtime; avoiding strenuous exercise, bright lights and television before bedtime; relaxing before bedtime by doing yoga or breathing exercises, taking a soothing bath, or sipping calming herbal teas like chamomile. For some people, prescription or over-the-counter drugs may also help.
Changes in your thoughts or feelings that occur over a period of time may be a sign of a mental health problem such as depression or anxiety.
Peripheral neuropathy
Peripheral neuropathy is nerve damage that causes numbness, burning, tingling and severe pain in the toes, feet and legs, and sometimes in the hands and arms. Peripheral neuropathy is most often caused by d4T (Zerit) and ddI (Videx). Viruses, including cytomegalovirus (CMV) and HIV infection itself, can cause or contribute to peripheral neuropathy. Diabetes, some cancer treatments and the heavy use of alcohol, cocaine and amphetamines can also play a role. Let your doctor know right away if you have symptoms of peripheral neuropathy. If drugs are causing nerve damage, it may worsen and become permanent. If the pain does not eventually resolve after switching drugs, or if switching drugs is impossible for some reason, doctors may prescribe the following drugs to relieve the pain: gabapentin (Neurontin), amitriptyline (Elavil) or
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nortriptyline (Pamelor). These are not typical pain-relieving drugs, but seem to work for peripheral neuropathy. Standard pain-relieving drugs such as Aspirin (ASA) or Tylenol (acetaminophen) can also be used, depending on how painful the condition is. Some nutritional supplements have shown promise in repairing damaged nerves in people with diabetes. They may be helpful in people with HIV who have peripheral neuropathy. These include B complex vitamins, especially B12 and B6, alpha-lipoic acid, gamma-linolenic acid and acetyl-L-carnitine You may find relief from neuropathic pain with acupuncture or acupressure treatments (see Chapter 5, Complementary and alternative therapies). Exercise (to increase circulation to the nerves) may also help.
Peripheral neuropathy is nerve damage that causes numbness, burning, tingling and severe pain in the toes, feet and legs, and sometimes in the hands and arms.
Resources
Practical Guides for People Living with HIV CATIEs practical guide series contains extensive information about managing side effects and symptoms. See: A Practical Guide to Managing HIV Drug Side Effects A Practical Guide to Nutrition for People Living with HIV A Practical Guide to Complementary Therapies for People Living with HIV A Practical Guide to Herbal Therapies for People Living with HIV Plain and Simple Factsheets on side effects and symptoms Available in multiple languages In-Depth Factsheets on side effects and symptoms Comprehensive information for people living with HIV and their care providers The Positive Side Health and wellness magazine contains articles about symptoms and side effects, such as: Facial wasting and what you can do 13 ways to love your liver Ask the experts: gut reactions Good to the bone
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Look under Symptoms, Illnesses and Side Effects in the e-zine index (www.positiveside.ca) TreatmentUpdate and CATIE News News bulletins about cutting-edge developments in HIV research and treatment Cannabis and HIV Information sheets by the Canadian AIDS Society on the medicinal use of marijuana (www.cdnaids.ca) Medical Use of Marijuana Information on Health Canadas system for accessing medicinal marijuana (www.hc-sc.gc.ca/dhp-mps/marihuana/index-eng.php)
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HIV-related infections and cancers

This chapter discusses some of the infections and cancers that can develop in people living with HIV. Most of these illnesses can be prevented with proper monitoring, and care and they are much less frequent than they were before highly active antiretroviral therapy (HAART) became available. However, its important to know about these infections and cancers so that you can take the proper steps to prevent them. About the author
Evan Collins is a doctor, psychiatrist, researcher, consultant, advocate and person living with HIV. His involvement with HIV/AIDS dates back to 1984 when he joined the board of the AIDS Committee of Toronto. Over the years, he has served on numerous boards and committees, including the CATIE board of directors, and was community co-chair for AIDS 2006. He works as a doctor at Hassle Free Clinic in Toronto, as a psychiatrist in a community mental health program, and as a policy and organizational development consultant. He currently is President of the Ontario HIV Treatment Network and is North American NGO delegate for the Board of UNAIDS.
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CONTENTS
Life-threatening infections Co-infections Other infections Vaccinations Cancers
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HIV-RELATED INFECTIONS & CANCERS
There are a number of infections and illnesses that can develop in people who are living with HIV. Some of these life-threatening infections are called opportunistic infections. These only occur if your immune system is quite weakened and your body becomes vulnerable to infections that would not affect you if you were healthy. Co-infections are illnesses that can occur in people with normal immune systems, but they can impact how you live with HIV. Some types of cancers are thought to be more common in people with HIV. Increasingly, the distinction between these different types of infectionslifethreatening infections, co-infections and even some cancersis blurred, as
Life-threatening infections called opportunistic infections occur if your immune system is quite weakened and your body becomes vulnerable to infections that would not affect you if you were healthy.
some infections can fit all three categories (for example, human papillomavirus, which can lead to cervical and anal cancer).
Life-threatening infections
These infections occur only when a persons immune system has been seriously weakened by HIV. As described in Chapter 2, HIV the basics, HIV attacks immune cells called CD4+ cells, which are needed for fighting off infections and some cancers. A normal CD4+ cell count in an HIV-negative person is around 500 to 1,500 cells in each cubic millimetre (mm3) of blood. As your CD4+ cell count gets lower, your immune system becomes unable to fight off a number of common viruses, bacteria and parasites. These infections can then take hold. (They are sometimes called opportunistic infections because they take advantage of your weakened immune system.) Life-threatening infections are a lot less common now, since most people
As your CD4+ cell count gets lower, your immune system becomes unable to fight off a number of common viruses, bacteria and parasites.
take highly active antiretroviral therapy (HAART). This is because when you take HAART it improves your immune system function and raises CD4+ levels and in this way helps prevent life-threatening infections caused by HIV. The main danger is in not finding out you are HIV-positive until your CD4+ cell counts are already so low that you are at risk, or are already sick with a life-threatening infection. The more common life-threatening infections are listed in the accompanying table. Some of these can still occur in people with relatively high CD4+ cell counts, but are more serious when the immune system is weakened.
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The more common life-threatening infections include a lung infection called Pneumocystis pneumonia (PCP), an eye infection caused by cytomegalovirus (CMV), a brain infection called toxoplasmosis, and a generalized infection called Mycobacterium avium complex (MAC). If your CD4+ cell count is very low, there are drugs you can take to prevent these infections. This is called prophylaxis.
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HIV-related Infections: These are some of the more common life-threatening infections that can affect people whose immune systems are severely weakened by HIV.
NAME WHAT IS IT? PCP
A lung infection that causes pneumonia. Can sometimes infect other organs. Pneumocystis jirovecii (formerly called Pneumocystis carinii)
TOXOPLASMOSIS
An infection that can infect the brain, but also the eye or other organs. Toxoplasma gondii
CMV
A viral infection of the eye. Can also affect other organs. Cytomegalovirus
MAC
An infection of the gastrointestinal (GI) system that can also affect other organs. Mycobacterium avium
WHAT IS IT CAUSED BY?
YOURE MOST AT Under 200 cells/mm3 RISK WITH CD4+ CELL COUNTS SYMPTOMS TO WATCH FOR INCLUDE*
Shortness of breath, trouble breathing, tiredness, dry cough, fever. Pneumonia (inflammation of the lungs). Can be fatal if not treated. Taking preventive medication (usually Septra/ Bactrim) if your CD4+ cell counts are under 200 cells/mm3.
Under 100 cells/mm3
Under 50 cells/mm3
Under 50 cells/mm3
Constant headache, fever, seizures, or stroke-like symptoms (loss of vision, sudden weakness or speech difficulties). Damage to the brain, eyes, or other organs. Taking food safety precautions, avoiding contact with infected cat feces, taking preventive medication (usually Septra, as for PCP) if your CD4+ cell counts are under 100 cells/mm3.
Any sudden or unusual changes in vision.
Severe diarrhea, fever.
CAN CAUSE
Permanent blindness.
Disseminated (body-wide) disease. Can be fatal if not treated. Taking preventive medication (azithromycin or other drugs) if your CD4+ cell counts are under 50 cells/mm3.
CAN BE PREVENTED BY**
Watching carefully for symptoms if CD4+ cell counts are below 50 3 cells/mm , and treating immediately if necessary.
IS TREATED WITH
Higher doses of Septra/Bactrim, or other drugs.
The antibiotics pyrimethamine Ganciclovir or other and sulfadiazine or other drugs. drugs.
Powerful combinations of antibiotic drugs.
*These lists of symptoms are not complete. You should immediately alert your doctor of any sudden or worrisome symptoms, especially if your CD4+ cell counts are low. **Most life-threatening infections are much easier to prevent than to treat. The best way to prevent life-threatening infections is to keep your CD4+ cell counts above the danger levels. If that is not possible, prophylactic (preventive) drugs can lower the risk of many life-threatening infections.
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Co-infections
These are infections that can occur even in people with HIV who have adequate CD4+ levelsjust as they can occur in people who do not have HIV. They are called co-infections because you have them along with HIV. Co-infections can complicate your HIV treatment and make living with HIV more difficult. HIV can also complicate the treatment and diagnosis of a co-infection. Although they may occur at normal CD4+ levels, the lower your CD4+ cell count is, the more of a problem they can be.
CO-INFECTIONS: These are some of the more common co-infections that people with HIV may have. NAME WHAT IT IS: ITS CAUSED BY ITS TRANSMITTED HOW DO I KNOW I HAVE IT? HEPATITIS B
A viral infection of the liver. The hepatitis B virus (HBV). Through blood and body fluids; can be transmitted sexually. HBV may cause flu-like symptoms or jaundice, but there may be no symptoms. Blood tests can tell whether youve been exposed. Liver damage. However, many people with HBV clear the infection on their own. Blood tests can tell whether you are actively infected. Vaccination; avoiding exposure to the HBV virus. Antiviral drugs, but its not clear which treatment is best. People with HIV and HBV must be treated carefully to avoid drug resistance.
HEPATITIS C
A viral infection of the liver. The hepatitis C virus (HCV). Mostly through blood; sometimes through sex, especially in gay men. There are often no symptoms of being infected with HCV. Blood tests can easily detect it.
TB
A lung infection. A bacterium called Mycobacterium tuberculosis. By close contact with someone with TB, by breathing the air they have coughed or sneezed into. A skin test can tell whether you have been exposed.
CAN CAUSE
Liver damage and, in the long term, liver cancer.
Fever, chills, trouble breathing, and weight loss. TB can cause serious or fatal illness if not detected and treated. Avoiding exposure.
CAN BE PREVENTED BY ITS TREATED BY
Avoiding exposure to the HCV virus. A combination of antiviral drugs. Treatment lasts several months to a year, may not be successful, and can have difficult side effects.
A several-month course of drugs, depending on whether the infection is active or not. TB can easily become drug-resistant if the full course of treatment isnt taken.
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Hepatitis
Chronic hepatitis is an increasingly common co-infection for many people with HIV. Hepatitis is a liver condition usually caused by viruses called hepatitis A, hepatitis B or hepatitis C. These viruses infect the liver and can cause jaundice (yellow skin and eyes), dark urine, pale stool and severe fatigue. It is a good idea for your doctor to check regularly for these infections. Hepatitis B and C are transmitted by: blood-to-blood contact through sharing drug-using equipment, or personal care items like razors; transfusion of blood and blood products before 1992 when the Canadian system started screening; unprotected sexual intercourse; being passed from mother to child during childbirth. Hepatitis A is another, usually less serious, viral infection of the liver. Hepatitis A is spread through feces (shit), and you can be infected by contaminated food (for instance, if someone handling your food has hepatitis A and did not wash his or her hands). If you are exposed to hepatitis A, it can make you quite sick for a few weeks, but your immune system usually clears it. Hepatitis A very rarely causes permanent damage unless you already have hepatitis B or C as well. If infected with the hepatitis A or B virus, some people get over the initial liver infection and develop immunity. This is much less likely to happen in people with HIV who are co-infected with hepatitis C. Many develop chronic hepatitis, remain infectious to others and develop ongoing liver problems. With hepatitis C, around three-quarters of people infected become chronic carriers of the virus and remain infectious to others. As described below on page 175, there are vaccinations that will prevent you from geting hepatitis A and B infection. There is no vaccination available for hepatitis C. Antiviral treatments are available for both hepatitis B and C infection, but treatment is less likely to work when you also have HIV. Treatment is more successful the stronger your immune system is, so often the HIV is brought under control first before hepatitis treatment is begun. There are many interactions between drugs to treat hepatitis and HIV, so make sure you see a doctor with expertise in both conditions.
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Co-infections can complicate your HIV treatment and make living with HIV more difficult.
Chronic hepatitis is an increasingly common co-infection for many people with HIV.
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Tuberculosis (TB)
TB is a concern for people with HIV because it is so easily spread, especially in places where people live close to each other, in poverty and without adequate medical care. TB usually infects the lungs, but it can also affect the bones, brain and other organs in your body. TB is spread through the air when someone with active TB coughs or sneezes. Diagnosis of TB is done by skin tests, tests of your sputum (phlegm) and chest X-rays. There are effective treatments for TB,
TB is a concern for people with HIV because it is so easily spread. TB is spread through the air when someone with TB coughs or sneezes.
but they need to be taken every day for many months. Missing doses, or stopping before the full treatment period is over, can cause the TB infection to become drug-resistant and much more difficult to treat. People with HIV with a history of previously treated TB may have it reactivate (come back again) if their immune system weakens.
Herpes infections
Herpes is a family of viruses that includes: Herpes simplex, which causes cold sores on the mouth or painful sores on the genitals. Varicella-zoster, which initially causes chicken pox and when reactivated causes painful sores called shingles anywhere on the skin. Herpes infections are common and are often transmitted by physical contact and sex. Usually, the immune system keeps herpes infection under control until something like stress or a high fever brings the sores out in an outbreak lasting seven to 10 days or longer. The lower your CD4+ cell count, the more frequent the outbreaks may be. They may also last longer. People with HIV with extremely weak immune systems (CD4+ cell counts less than 100 cells/mm3) are at risk for herpes infections all over the body (disseminated herpes) or in the brain (herpes encephalitis). People with frequent herpes outbreaks (even with normal CD4+ levels), or people at risk for more serious herpes infections, can take antiviral drugsusually valacyclovir or similar drugsto keep the herpes virus suppressed.
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Fungal infections
Fungal or yeast infections can happen whether you are HIV-positive or not. Women get vaginal yeast infections, and men and women can get athletes foot or fungal infections on the skin or nails. The more weakened your immune system is, the more this can be a problem. Even people with relatively good CD4+ cell counts can get a fungal infection in the mouth or vagina called candidiasis or thrush. Antifungal creams, pills and vaginal suppositories are available to treat these problems, and probiotic supplements or yoghurts with friendly bacteria may also help. Watch your diet because the more sugar you eat, the more susceptible you are to fungus, which loves sugar.
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Sexually transmitted infections

Some of the infections discussed above can be passed on in many ways, including through sex. Some other bacterial infections, like chlamydia, gonorrhea, syphilis and HPV, are virtually always transmitted sexually. For more information about sexually transmitted infections (see Chapter 7, Your sexual health).
Usually, the immune system keeps herpes infection under control until something like stress or a high fever brings the sores out in an outbreak.
Other infections
For people with HIV, even minor infections can have serious consequences. Infections can activate your immune system and increase the chance of HIV replication. There are actions you can take to prevent infections. Many of these are common-sense practices like washing your hands often and well, getting plenty of rest and avoiding other people who have colds or the flu. Some other things to consider are discussed below.
Your water supply

Most city water supplies are tested and purified to ensure they are free of infectious organisms (germs). If you get your water from a well or an untreated water source, you should have it tested for impurities and/or drink only boiled or bottled water. Water-borne infections like Cryptosporidium, E. coli and Giardia
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cause diarrhea and severe illness, especially in people with HIV. You should take precautions when travelling to parts of the world where outbreaks of cholera, Cryptosporidium, E. coli and hepatitis A can be passed on through water.
The food you eat

Avoiding contaminated food is also an important way of preventing infections, such as E. coli, Salmonella and Listeria. You can avoid many infectionsboth mild and potentially seriousby: making sure that your hands and the surfaces that you are preparing the food on are clean; ensuring that meat and seafood is thoroughly cooked; carefully peeling or washing fruits and vegetables; avoiding foods that are past their best before dates or are spoiled; keeping raw meat, poultry and seafood separate from ready-to-eat foods such as fruits or salads and keeping raw meat, poultry and seafood separate from cooked foods. This includes paying attention that you dont reuse your cutting board for ready-to-eat foods after it has been used for raw meat or seafood; not letting food sit out at room temperature for long if it is prone to spoiling. Keep hot things hot and cold things cold; paying attention to warnings about food contamination.
Your pets
Pets are very important to some people with HIV and offer many benefits; however, some people with HIV are vulnerable to infections from pets. There is no reason you should have to avoid having a pet if you are HIV-positive. But do take care when handling pets and their waste. For example, when changing your cats litter you should wear gloves and avoid breathing in the dust, which can transmit toxoplasmosis. Also, always wash your hands after handling any animals waste.
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Vaccinations
Vaccines stimulate your immune system to develop resistance to an infection, without causing illness themselves. Your doctor should ensure you have had all your childhood vaccinations for infections such as measles and mumps, and keep you up to date with vaccinations for tetanus and pneumococcal pneumonia. People with HIV should consider vaccination for hepatitis A and B, which involves two or three injections over a six-month period. Unfortunately, there is no vaccination available for hepatitis C.
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VACCINATION RECOMMENDATIONS: Vaccine recommendations are based on the protective benefit of the vaccine, versus any possible risk to people with weakened immune systems. You should discuss vaccinations carefully with your doctor (like all medical procedures); these are some of the general guidelines for people with HIV: CONDITION
Measles, mumps & rubella
VACCINATION
Should be given in childhood. Probably safe for HIV-positive adults except those with very low CD4+ cell counts. Should be given at least once for all people with HIV. Consider revaccinating after five years. Should be considered. Has not been evaluated in HIV-positive women or in men of any HIV status. Recommended annually for all people with HIV. These and other live vaccines should generally be avoided by people with HIV. Some may be appropriate in those with higher CD4+ cell counts.
GIVEN AS
A single injection at around age 1, with a booster at age 4 to 5.
Pneumococcal pneumonia Hepatitis A and B HPV
A single injection (Pneumovax).
Your doctor should

Two or three injections over a six-month period. A series of injections, preferably in teenage girls before they become sexually active. One shot every year, in the fall. Not generally given to people with HIV.
ensure you have had all your childhood vaccinations for infections such as measles and mumps, and keep you up to date with vaccinations for tetanus and pneumococcal pneumonia.
Influenza
Oral: typhoid, polio, Injectable: varicella, BCG vaccine for TB, smallpox, cholera
Most doctors recommend that people with HIV get the flu vaccine every year in autumn for prevention of the influenza virus. There is an oral vaccination available for cholera and E. coli that will prevent travellers diarrhea, and this should be considered for anyone travelling to developing parts of the world. HPV vaccination is also available.
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Unfortunately, there is some evidence that people with HIV dont always get the full effect from a vaccination, and some people need higher vaccine doses or booster shots. The vaccine for measles, mumps and rubella should be avoided if your CD4+ cell count is too low. Other live vaccines, like varicella, oral typhoid, oral polio and BCG for TB, should be avoided by all people with HIV because they are made from live virus and may cause serious illness in people with HIV.
With a weakened immune system, people with HIV can become more vulnerable to certain types of cancer. Cancers seem to be more common in people with HIV even when their immune system is relatively healthy.
Cancers
Cancer is the abnormal and uncontrolled growth of cells in different parts of the body. These cancerous growths then destroy healthy cells and cause serious illness. A normally functioning immune system acts to suppress this abnormal growth of cells. With a weakened immune system, people with HIV can become more vulnerable to certain types of cancer. Some of these cancers occur only when the immune system is weakened. Other cancers seem to be more common in people with HIV even when their immune system is relatively healthy. Researchers do not know whether this is because of subtle changes to the immune system, effects of anti-HIV drugs, or just because people with HIV are living longer and reaching the age when people without HIV are also at higher risk of cancer.
Kaposis sarcoma
Kaposis sarcoma (KS), a rare form of skin cancer, is caused by a member of the herpes virus family and can be life-threatening. It causes purple lesions on the skin that look like bruises. Although slow growing, if it spreads to internal organs it can lead to illness and death. In the early days of HIV, it was quite common in people living with HIV. When HAART was introduced, KS became uncommon and now only occurs in people with very weak immune systems.
Non-Hodgkins lymphoma
When the cells in the lymph nodes become cancerous, this is called lymphoma. The non-Hodgkins type of lymphoma (NHL) is more common in people with
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HIV. The symptoms of NHL may include persistently swollen lymph glands, fevers, chills and sweats and weight loss. In the case of central nervous system lymphoma, the symptoms are often headaches and seizures. Diagnosis of lymphoma, like many cancers, is done by biopsy where a sample of tissue from a swollen lymph node is examined under the microscope for evidence of abnormal cells. In the event of central nervous system lymphoma, the diagnosis is made by examining cerebrospinal fluid tapped from the spine. Lymphoma is usually treated by chemotherapy, where powerful anti-cancer drugs are injected into the vein on a regular basis, and/or radiation therapy where high-powered X-rays are directed at the cancer cells. If you notice persistently swollen lymph glands (or nodes) anywhere in your body, you should alert your doctor.
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All women should have annual Pap tests to look for dysplasia.
Cervical cancer
The cervix is the opening of the uterus (womb) inside a womens vagina. Sometimes abnormal cells can start to grow on the cervix, usually as a result of HPV infection (see Chapter 7, Your sexual health). Over time, these abnormal cell growths can become a pre-cancerous condition called cervical dysplasia. If dysplasia is not found and treated, it can become cancer. To prevent this, all women should have annual Pap tests to look for dysplasia from a small scraping of cells from the cervix. Women with a history of genital warts or cigarette smoking should have Pap tests more frequently. If dysplasia is found, it is usually treated with a laser in a procedure called colposcopy. The HPV vaccine will protect women from some, but not all, strains of HPV and so it is hoped it will prevent some cases of cervical cancer. However, this vaccine is effective only if it is given before exposure to the HPV strains the vaccine targets.
Anal cancer
Cancer in the anal canal of men and women is similar to cervical cancer. It is also usually caused by infection with HPV and, like cervical cancer, develops over time from dysplasia to cancer. Risk factors include a history of anal sex and/or genital warts. Both men and women with HIV are thought to be more
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vulnerable to this form of cancer. Anal Pap tests are not routinely available throughout Canada, but ask your doctor if testing is available in your area.
Other cancers
There are many other forms of cancers that people with HIV are thought to be at slightly higher risk for, even without immune suppression. These include Hodgkins lymphoma, lung cancer, skin cancer, vaginal cancer in women and testicular and prostate cancer in men. Fortunately, these cancers are not common and can often be successfully treated if they do occur in people with HIV who maintain healthy immune systems with HAART.
Resources
HIV and Hepatitis C Co-infection Brochure of frequently asked questions and answers about viral load tests for people with HIV Hepatitis C Comprehensive information about the prevention and treatment of hepatitis C (www.hepcinfo.ca) Plain and Simple Factsheets on co-infections, cancers and other conditions Available in multiple languages In-Depth Factsheets on co-infections, cancers and other conditions Comprehensive information for people living with HIV and their care providers The Positive Side Health and wellness magazine contains articles about infections and related conditions, such as: Infections and bugs and germs oh my! Double duty: living with HIV and HCV Look under Symptoms, Illnesses and Side Effects in the e-zine index (www.positiveside.ca) TreatmentUpdate and CATIE News News bulletins about cutting-edge developments in HIV research and treatment
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Canadian Food Inspection Agency This federal government agency, responsible for food safety in Canada, posts up-to-date information on contaminated food products (http://www.inspection.gc.ca)
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Hospital stays
This chapter tells you what you need to know about the hospital environment so that you can be comfortable and confident there. It describes what you need to do to prepare for your hospital stay, how to be the leader and decision maker in your hospital care, and how to manage the transition back to home once you are discharged. At the end of the chapter, there is information on how to prepare for health emergencies and possible alternatives to a hospital admission. About the author
Deborah Randall-Wood is a registered nurse with specialty certification in HIV/AIDS nursing (ACRN) and in Hospice/Palliative Care Nursing (CHPCN). She started working with people living with HIV more than 20 years ago in the first team of nurses hired by Casey House Hospice when it opened in 1988, and has been involved in HIV/AIDS care ever since. She is past co-chair of the Ontario AIDS Network, past chair of the AIDS Committee of Durham and past president of the Canadian Association of Nurses in HIV/AIDS Care (CANAC). Deborah manages the oncology and neurology rehabilitation unit at St. Johns Rehab Hospital and is a member of the Board of Directors at the Toronto People With AIDS Foundation.
CONTENTS
The hospital environment Preparing to go to the hospital Being admitted Communication is the key Going home Instead of going to a hospital
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HOSPITAL STAYS
There may be times in the course of living with HIV when you need to be in a hospital. This could be a brief visita few hours in an emergency department, for exampleor a stay that lasts days or weeks. In some situations, you may require an even longer stay in a specialized unit or facility. Hospitals are there to help you manage health emergencies that cant be addressed at home or by your usual healthcare providers. Hospitals also provide the specialized care and intensive treatments or assessments you may need from time to time as you manage your health.
The hospital environment

A hospital can be a confusing place, even to people who work or volunteer there, so dont be surprised if it appears confusing to you, too. It will get more familiar the longer you are there. There are hundreds, perhaps thousands, of people who work there in many different areas. You will encounter many of these people during your stay, but many others will be working behind the scenes.
If you are not sure who someone is or what he or she does, it is fine to ask.
Everyone working in a hospital is trained to do his or her job, and all employees report to someone who supervises their work. Staff and volunteers in hospitals wear name tags, which usually show their picture, first name and areas where they work. They may also wear uniforms, depending on their role or the policies of the hospital. If you are not sure who someone is or what he or she does, it is fine to ask. Hospitals are busy places that usually run 24 hours a day, seven days a week. However, some parts of hospitals, such as out-patient clinics or staff offices, may only be open during certain hours or on an as-needed basis. There are many processes in place to ensure that hospitals run smoothly. These may not make sense to you, so ask if you do not understand the reason something is happening. You are allowed and expected to ask questions, and you should expect to have your questions addressed. A hospital may be located in one or many buildings. These may be located in one place or spread out over many sites. There are maps near every entrance to help you get around. Signs for frequently used areas are usually large and easy to see.
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Arrive early if you can. Its good to take time to find your way around, especially the first time you are there. Dont be afraid to ask for help with directions. Hospitals have information desks near the main entrance to help with this, although there will be times when no one is at the desk. There will always be signs on the walls and sometimes lines on the floor to guide you. Most activities in a hospital are done on a priority basis. This means that those people who are sickest get looked after first. Your procedure may be postponed to allow for someone in more critical condition.
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Expect the unexpected

If you experience an unexpected health crisis, you may need to go to hospital suddenly. You can prepare for this ahead of time. The most important thing is for people to know essential information about you. The following information should be either with you, or easy for people to find, at all times: your own name, phone number and address (youd be surprised how many people go around without this); an up-to-date list of all your drugs; names of next of kin or people to contact in an emergency, and how to reach them; a note indicating any physical limitations (such as impaired hearing, or need to use a cane); your health card; special instructions related to religious or cultural customs. This information can all be written down on a sheet of paper titled In an Emergency and folded in your wallet. Check this monthly to make sure it is still up to date. It may also be a good idea to let someone you trust have a key to your home so that he or she can look after things for you.
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Preparing to go to the hospital

There are ways to prepare for being in hospital and to help other people prepare for you to be away from home. Make a list of your weekly activities and determine what needs to be done while you are away. (This could include things like looking after your pets, watering your plants, picking up your mail or paying your rent.) Then decide who can do these things for you. Talk to your friends and family to figure out what you can realistically expect from them. If possible, try to do this before you actually need to. Then youll know that the
Make a list of your weekly activities and determine what needs to be done by others while you are in hospital.
people you are counting on can actually do the things you need. Sometimes, one person will be able to look after everything. In other situations, it may be better to divide the duties among a number of people. Try to have a back-up plan in case your first choices do not work out. This way, when you need to put your plans in action, everything will be in place. Make a list of the things you would want to take with you to the hospital. You may feel anxious when you are told you need to go there, so having a list prepared ahead of time will help you. Things can sometimes get lost in hospitals, so do not take anything you would hate to lose. Leave your valuables at home or with someone you trust. Most hospitals have Web sites with a section for people who are going to be
Most hospitals have Web sites with a section for people who are going to be admitted to the hospital. This should tell you what you are allowed to take.
admitted to the hospital. This should tell you what you are allowed to take. Or phone the hospital and ask to speak to someone about what you may take with you.
Being admitted
The process of being admitted can be time consuming. If possible, bring someone with you for company and support. Bring a snack in case you get hungry if you have to wait, and a book in case you get bored. If your admission is planned, youll likely have a pre-admission appointment prior to the day you are admitted to gather essential information, like which drugs you are on. This appointment may also involve blood work or other diagnostic tests. You will be given information about where to go on the day
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you are admitted and any special instructions you may need. (For example, you may be told not to eat after midnight.) This is a good time to ask questions about anything you are unsure of and to provide information on any cultural, religious or spiritual requirements you may have. Also mention any physical limitations or disabilities, even if these seem obvious to you. The hospital staff will try to meet your needs and will let you know if there is anything they cannot do. If something important cannot be accommodated, ask to talk to someone who can offer alternatives.
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Bring a paper and pen and write down the answers to your questions, including the name of the person you are talking to. There is a lot of information to take in, and even people experienced with this process can forget some of the details.
Things to take with you to the hospital

toothbrush toothpaste hairbrush or comb shaving equipment soap, shampoo, deodorant, moisturizer tissues two sets of loose-fitting and easy-to-clean casual clothes such as sweats underwear pyjamas housecoat slippers with non-skid soles writing materials or laptop things to read and keep you occupied important phone numbers your current drugs a couple of copies of the list of the drugs you are taking
Bring a paper and pen and write down the answers to your questions, including the name of the person you are talking to. There is a lot of information to take in, and even people experienced with this process can forget some of the details. If you were admitted through the emergency department, all the necessary tests and instructions will take place as they are needed.
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Once in hospital, you will be assigned a private room (with one bed), a semi-private room (with two beds) or a ward (three or more beds). This depends on availability, insurance coverage or your clinical needs. Hospitals have many different types of care providers (referred to as multidisciplinary or interdisciplinary care teams) that work together to look after you. Many of these care providers are described in Chapter 3 (Your healthcare team). The care providers' responsibilities can vary from hospital to hospital, so it is important to ask what do you do? or what can you help me with? when
You need to have clear and frequent communication with those who are caring for you.
you are introduced to someone involved in your care. Again, it is fine to write this all down so you wont forget. At some hospitals, usually referred to as teaching hospitals, medical students will be involved in your care as part of their training. However, you have the right to decide whether you want students to be involved in your care. Let one of your care providers know if you dont want students to be involved.
Communication is the key

As mentioned above, you are not only allowed but expected to ask questions about what is happening to you, and you can expect to have your questions answered. Confidentiality and privacy policies will prevent your private health
It is also important that you communicate with family and friends. Let them know clearly and directly what you need from them.
information from being shared with anyone who is not important to your care. You need to have clear and frequent communication with those who are caring for you. Let them know about your concerns. You have to identify what your priorities are, because that is what your care providers are going to be doing on your behalf. You want to make sure that your priorities and theirs match. If not, insist that they spend time talking with you so that you can get some agreement on what is going to be happening to you and why. It is also important that you communicate with family and friends. Let them know clearly and directly what you need from them. Sometimes, people are so concerned for you that they lose track of what you really need. They may be unaware of how exhausting visits can be, or how the hospital schedules and routines work. Tell them instructions like Im sleepy 10-minute visits only, please or Im getting my beauty rest. Or, write these down and stick them on the wall
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over your bed or on your door. Most visitors will be happy for the directions. If anything happens that you are not happy with, tell someone. Try to speak to the person closest to the problem first, but if you cant do that, tell someone else. Every unit in a hospital has a unit manager, head nurse, charge nurse or supervisor that you can talk to. Hospitals also have an ombudsperson. This is a patient advocate with whom you can speak if you have a problem. If there is no ombudsman, the social worker on your unit will be able to help you identify who you should talk to. It is helpful to be specific, provide details and talk about what you would rather have had happen. If something is wrong, being silent will not help you resolve the problem, nor will it help the hospital to improve. Speak up if you can. If you feel you cant, a friend my be able to speak on your behalf.
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Going home
At some point during your hospital stay, youll be told that it is time for you to go home. Usually this is planned a few days in advance. Plan for your discharge in the same way that you planned for your admission. Make a list of all the things that are being done for you in the hospital. Then identify which things need to continue when you are home and who will be doing these things. It may be you, a visiting nurse, social worker, rehabilitation therapist or someone else involved in your care. If you dont know who will be doing it, ask. Hospital staff called discharge planners can help you prepare for going home. (Sometimes social workers do this, too.) Back when you were preparing to be admitted, you made out a list of jobs and duties that needed looking after at home. Now, when you're preparing to go back home, is a good time to look over that list again. Look at all the things you will need to do at home and think about how you will be able to get these things done. Before you are discharged, hospital staff may be able to arrange for some kinds of homecare services. These may include certain types of home clinical care, such as changing dressings, rehabilitation exercises or accessing funding for some drugs. However, these services only provide basic assistance related to your physical care. Your friends or family members may need to help
Look at all the things you will need to do at home and think about how you will be able to get these things done.
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you for a while, doing laundry, cooking or grocery shopping. Be sure to check in with the people who are helping you and see how long they will be able to help. Open, direct discussions about what you need and what others can provide is essential.
Instead of going to a hospital

If you are told that you need to go into hospital, you may want to ask if there is any other way to accomplish what that hospital would do. If it is an emergency, this may not be possible. But, in some other cases, a continuing care facility may be a better choice than an acute care hospital. A continuing care facility is like a hospital, but for people who require longer stays with some rehabilitation therapy. Some hospices provide supportive care if you need more help that can be given at home. Hospices are places where people who are very sick can receive 24-hour care. Nurses, with the help of volunteers, do the caregiving. Space is usually limited in hospices and there are often waiting lists. Residential hospices tend to be located in towns and cities and so may not be available in rural areas. It is important to ask your care providers if there are other choices. The decision is always yours.
Resources
Relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
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CONTENTS
HIV and rehabilitation

The impact of living with HIV disease can make certain everyday tasks and activities difficult. This chapter discusses rehabilitation services for people living with HIV and offers some suggestions about how to lessen the physical, mental, emotional and social challenges of living with this disease. About the author
The Canadian Working Group on HIV and Rehabilitation is a national, charitable organization that responds to the rehabilitation needs of people living with HIV/AIDS. The working group bridges the traditionally separate worlds of HIV, disability and rehabilitation. Through research, education and cross-sector partnerships, the group is working to improve the lives of people with HIV.
Living with the challenges of HIV What is rehabilitation? How can rehabilitation services help me? The basic components of a rehabilitation program Emerging issues in HIV and rehabilitation Your role on the rehabilitation healthcare team
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HIV AND REHABILITATION
Living with the challenges of HIV

Do you or people you know have health-related problems due to living with HIV or side effects of HIV treatment? Perhaps you have tingling or numbness in your feet, pain in your legs or arms, or feel weak and tired when you try to stand, climb stairs or walk for any length of time. Maybe you cant feel the temperature of the water in the bathtub or shower. Are you finding it harder to concentrate or focus on your activities the way you used to, forgetting things more easily, and/or finding it more difficult to work or visit with friends? Many of these problems are described in Chapter 11, Side effects and symptoms. Maybe they dont happen all the time, but perhaps they are happening more often than before. Some people may say, Oh, Im just getting
Perhaps there are activities you can no longer participate in or which you can no longer do.
older, (which is true for all of us) but it also may be that the impacts of living with HIV are making it more difficult to do the things you want to do. It doesnt have to be this way; there are people and supports that can help you. This chapter about rehabilitation will suggest ways to reduce many of the health- and life-related challenges of living with HIV. You know better than anyone that living with HIV presents many challenges. These may include challenges to your physical, mental, emotional or social health, and may be due to HIV infection itself or its associated treatments. Perhaps there are activities you can no longer participate in or which you can no longer do. You may not think of these as disabilities. Most people think of a disability as a permanent physical condition, such as a spinal cord injury that results in paralysis. But, in the world of rehabilitation, disability is a much broader con-
A disability is a health-related challenge that interferes with meaningful, active living.
cept. A disability is a health-related challenge that interferes with meaningful, active living. Disabilities fall into three main categories: Physical or mental challenges: for example, symptoms that include pain, fatigue, diarrhea, numbness or tingling, reduced sex drive (libido), decreased memory, changes in body fat distribution and speech or language difficulties. Difficulties with day-to-day activities: for example, walking, climbing stairs,
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carrying groceries, standing for a long period of time or taking a bath. Social participation restrictions: for example, difficulty working, participating in social activities or relationships. While some people living with HIV have chronic (long-term) disabilities, most disabilities related to HIV are episodicthey come and go. You may have experienced thisperiods of wellness and then periods of illness. These episodes may occur daily (you have good days and bad days), or include major health changes (such as an infection that results in hospitalization). Often, you may have no way of knowing how you will feel from one day or week to the next, what kinds of health challenges youll experience, or how long they will last. The uncertainty of not knowing when an episode might arise and how severe that episode might be is a challenge that is commonly faced by people living with HIV. In addition, since anti-HIV drugs are helping people to live longer, you may begin to experience common diseases of aging such as heart disease, diabetes, cognitive changes and arthritis. No matter whether these other conditions are caused by HIV, your anti-HIV drugs or the aging process, they can still compound the physical and mental challenges of living with HIV.
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Most disabilities related to HIV are episodicthey come and go.
What is rehabilitation?
Rehabilitation is any service or activity that can address or prevent the healthrelated challenges (or disabilities) that people living with HIV might face. Rehabilitation is an important component of the care for many common diseases such as arthritis, heart disease and diabetes. In these diseases, rehabilitation is not only used as a treatment, but also to prevent new conditions from developing or current ones from worsening. Research has shown that rehabilitation interventions like stress management, maintaining a healthy weight and regular exercise can prevent or reduce the severity of many diseases. So it makes sense that rehabilitation can be helpful for people living with HIV at any stage, in periods of both wellness and illness. But rehabilitation is about much more than diet, weight management and exercise. Rehabilitation is about helping people to manage their health problems.
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It also means providing support so that people can be included in their communities while continuing to live as independently as possible. Rehabilitation services can include physiotherapy, occupational therapy or speech-language therapy, as well as complementary or alternative therapies such as acupuncture, massage therapy and counselling.
Rehabilitation is about helping people to manage their health problems. It also means providing support so that people can be included in their communities while continuing to live as independently as possible.
How can rehabilitation services help me?

To address the different types of health-related challenges you may face, there are several different types of rehabilitation and rehabilitation providers.
Physical rehabilitation
Some of the challenges you face may be caused by physical changes in your body. A physical therapist (physiotherapist) can work with you to develop strategies that can help you with: managing or reducing pain, numbness or tingling sensations; feeling less tired; strengthening your muscles; improving movement in your joints; maintaining or improving your flexibility, balance and co-ordination; building your activity tolerance; learning to use a walker if you need one. An occupational therapist can help you learn to manage your daily activities and make adjustments in your home or workplace to allow for any physical changes you are experiencing. This could include: suggesting changes in your living or working space to accommodate any physical limitations you have; organizing your activities to assist with focus and memory; suggesting ways of organizing your days to conserve your energy; showing you how to use helpful aids or equipment;
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strategizing around complex medication schedules; determining how your family or other services in the community can support you. A speechlanguage pathologist (speech therapist) can: help you with issues affecting communication and swallowing; help you to maximize oral and written communication skills for staying at or returning to work (for example, reading, writing and public speaking). A physiatrist is a doctor who specializes in physical medicine and rehabilitation. A physiatrist can help you with: regaining movement or physical functioning you have lost; chronic pain; accessing any special tests or procedures.
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Questions for your healthcare team

This list covers some of the health challenges that rehabilitation services can help with. If you are experiencing any of the health challenges below and are not sure how to answer any of the following questions, speak with your healthcare team to learn more: What can I do to deal with fatigue, pain and other physical symptoms? Where can I get support to help me with: personal care and household chores? the impact of HIV on my financial situation? my feelings about having HIV? the way my family and friends respond to HIV? the way my partner and I deal with my HIV What kinds of exercises will help me? Are there any assistive devices or types of equipment that could help me? Where can I get more information about HIV and how to manage it? Do I understand the impact of HIV on my employment, income support and extended healthcare benefits? Should I talk with my employer and colleagues at work about HIVand how?
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Psychosocial rehabilitation and support

People living with HIV can experience stress, anxiety, depression, changes in sleep and appetite and reduced sex drive (libido). Self-esteem and relationships also can be affected. Psychiatrists, psychologists, psychotherapists, occupational therapists and mental health counsellors can help by: providing therapy or counselling to help you cope with the emotional impact of HIV; suggesting strategies and techniques to relieve anxiety and stress; helping you reduce feelings of stress and isolation; connecting you with peer-support groups; improving your self-esteem, maintaining personal relationships and support networks; prescribing drugs, if necessary (only doctors and psychiatrists can do this). Social supports, such as friends, family, cultural and other community organizations, can also provide both emotional and practical support. Some people with HIV also find that complementary or alternative therapies are helpful to address the many physical, mental or emotional challenges they face. These include: acupuncture; massage therapy; homeopathy; naturopathy; aromatherapy; chiropractic treatments; yoga, meditation, Tai Chi. Some of these supports and therapies are discussed in more detail in Chapter 3, Your healthcare team, Chapter 5, Complementary and alternative therapies, and Chapter 6, Your emotional health.
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Work-related issues
Staying in the workforce, or returning to the workforce after a period of illness, is often complicated if you have HIV. You may be concerned about how you will be treated if people find out you are HIV-positive. You may not know if or when to tell your employer about your HIV status. You may not want to leave your anti-HIV drugs where they might be found at work. You may not have the stamina to work full time, and your workplace might not be able to accommodate part-time hours. If you have been on long-term disability benefits and return to work, you may be concerned about income or health benefits if you get sick again. Occupational therapists, vocational rehabilitation programs and some AIDS service organizations provide: counselling about income support, health and disability benefits; information about your legal rights; advocacy on your behalf; job search and interview support; training and employment counselling. Rehabilitation professionals may work alone, but are commonly part of a larger team, including physicians, nurses, social workers, dieticians, pharmacists, substance use counsellors and community workers. It is important to talk to your doctor about all of the challenges you experience in your day-to-day life physical, mental, emotional, financial or work-related. Many of these challenges can be addressed by various types of rehabilitation or support.
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Rehabilitation professionals may work alone, but are commonly part of a larger team, including physicians, nurses, social workers, dieticians, pharmacists, substance use counsellors and community workers.
The basic components of a rehabilitation program

In rehabilitation, the person living with HIV is a central part of the process. Therefore, you will be encouraged to play an active role in your care. Rehabilitation is most effective when it includes a team approach that includes
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you, your primary caregivers, rehabilitation providers, those who pay for your rehabilitation services (for example, your insurance program or company) and other agencies you may be involved with. When you are referred to a rehabilitation service, you can expect the following: a baseline assessment of your areas of concern; a review of available information (for example, medical notes) from other caregiversprimary care or HIV community care providers; establishment of short- and long-term rehabilitation goals; an individualized rehabilitation plan to achieve those goals; monitoring of your progress towards your goals; referral to other services and agencies as needed or identified; discharge planning and co-ordination of services. You may also be asked to evaluate the rehabilitation services you received.
Where are rehabilitation services provided?

The place where services are provided will depend on the services available, the medical stability of your illness and your desired and expected outcomes. Some of the more common settings are: hospitals; outpatient centres and clinics; the private practices of healthcare professionals; local AIDS service organizations; your own home; hospices; work settings; schools; wellness centres; community parks and recreation programs (for example, YMCAs); public health departments.
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How can I access rehabilitation services?

You will need an assessment and referral by a doctor to access many rehabilitation services. This is especially important if the rehabilitation services are being paid for by your provinces health plan or private insurance. If the service is provided by your local AIDS service organization, you probably wont need a referral, and it may be free.
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Who pays for rehabilitation services?

The types of rehabilitation services paid for by public (government) health plans in Canada vary from province to province. Private (employer or individual) health insurance plans often cover some rehabilitation services, but there is usually a yearly maximum or a maximum per treatment, which may mean that you have to pay some of the costs with the insurance provider. You will need to talk to your doctor, rehabilitation provider, human resource department, insurance company and/or local AIDS service organization to find out what is covered for you. Some of the possibilities include: Provincial health plan If you receive rehabilitation services while you are in hospital, they are covered by your provincial health plan. If you continue to receive rehabilitation from the hospital in an ambulatory or outpatient clinic after you leave, it may also be covered. Private insurers Some rehabilitation services may be covered by your employers group health insurance plan (if you are still working or on disability benefits) or by private health insurance you purchased on your own. However, even if you have a plan through your employer, there are usually yearly maximums and sometimes only a portion of the cost is covered. Check your plan. Sliding fee scales Some rehabilitation providers have a sliding fee scale for people without insurance. Sliding scale means that the fee is based on the individuals ability to pay. AIDS service organizations Local AIDS service organizations may provide some rehabilitation services for free. Despite the importance of rehabilitation for people living with HIV and the increasing number of persons who may require rehabilitation, access to rehabilitation services continues to be a challenge across Canada. For example, some
You will need an assessment and referral by a doctor to access many rehabilitation services.
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provinces have removed certain rehabilitation services from public coverage. This can create a significant burden for those individuals who can only access rehabilitation services through publicly funded channels.
Emerging issues in HIV and rehabilitation

Among the many emerging issues relating to HIV and rehabilitation, a few have been identified as particularly important to the overall health of people with HIV: income support and work; rehabilitation strategies you can start yourself; living with HIV and other conditions; managing your anti-HIV drugs and their side effects.
Income support and work

Many people living with HIV find it difficult to work or to work full time. If your health status is changing monthly or daily, work may not be possible for you or it may be difficult to accommodate. Income security (having a reliable and predictable source of income) is a major source of stress for many people living with HIV. It can have a major impact on your health. Many people must rely on health and disability benefits such as: employment insurance sickness benefits; long-term disability and extended health benefits (vision, dental, prescription drugs, physiotherapy, etc.) provided by employee group insurance plans; Canadian Pension Plan Disability Program; provincial disability and social assistance programs. These benefits programs are described in detail in Chapter 20, Money matters. Rules and definitions vary between programs. Your local AIDS service organizations, occupational therapist or doctor may be able to provide you with information, explain what benefits you are entitled to and help you fill out any necessary forms. It is important to ask for this information and assistance. You
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have a right to this information; however, research has shown that many people do not receive this information unless they ask about it.
Rehabilitation strategies you can start yourself

In addition to working with rehabilitation professionals, there are many important components of rehabilitation you can start yourself. These include regular exercise, approaches for managing fatigue, such as energy conservation (see the Five Ps of energy conservation) and strategies to help with changes in your thinking and mental health.
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In addition to working with rehabilitation

Five Ps of energy conservation
If you have HIV, you may get tired easily. You can conserve or increase your energy level by following the Five Ps of energy conservation. 1. Pacing Break large tasks into several smaller ones. Do some jobs today and some another day. 2. Positioning Use correct posture and body positions while sitting, standing, taking part in recreational or other activitieseven sleeping. Make sure beds, chairs, desks, tables and computer keyboards are at a comfortable height. 3. Planning Make a list of things you have to do during the day. Plan to do the most difficult tasks when youre feeling your best. Keep the work you need to do close by and organized. 4. Priority setting Do only what you decide is most important. Eliminate less important things or ask someone to help you with them. 5. Problem solving Increase your energy by asking yourself: Is there an easier and better way of doing this? (Pushing instead of pulling; using two hands instead of one?) Is there some device, such as an electrical appliance or piece of equipment that can make this job easier? Do I really need to do this?
professionals, there are many important components of rehabilitation you can start yourself.
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Some people experience changes to their brain, which can affect their thinking and their emotional state. You may find that your judgment, attention, focus, motivation and ability to deal with emotional situations have changed. You may also experience some form of depression, anxiety or difficulty coping with the life changes resulting from your illness. Rehabilitation strategies that can help you with these changes include: using verbal or written cues or memory aids such as making lists, using a journal or calendar to help remember activities; developing a routine and structure to your time. For example, try to meet with someone for support on a regular basis; developing healthy coping strategies to assist with life situations. Research studies have shown that aerobic and resistive exercise training can be safe and may be beneficial for people living with HIV who are medically stable. While research has shown that exercise wont boost your CD4+ cell counts or lower viral loads, it will not harm the immune system or worsen virological status for people living with HIV who are medically stable. Before you start to exercise, it is important to gear any exercise program to your physical capabilities and personal goals. Be sure to talk with your doctor, physical therapist or other healthcare provider to find out which program might be right for you. See Chapter 4, Healthy living, for more information on exercise. Research has shown that regular aerobic or resistance exercise can: improve your strength; improve your cardiovascular fitness; improve and maintain your mood; help you to maintain a healthy weight. Recommended exercises and activities include activities that use large muscles, such as those in your arms and legs. Rehabilitation professionals often recommend: exercising in water or swimming; walking; cycling; dancing.
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Work up to exercising for a total of at least 30 minutes, three to five times a week. Regular exercise is the key to success, but you dont have to do it all at one time. Three 10-minute periods of exercise a day work just as well as one 30-minute session. Walking can help you to build strong bones and prevent osteoporosis. Exercising with hand and ankle weights or weight machines can increase your strength and reduce pain. Some people find it easier to exercise in warm water. Many community recreation centres have warm water exercise programs. Pool programs geared towards arthritis or osteoporosis may be especially beneficial for persons living with HIV.
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Living with HIV and other conditions

Many people with HIV will live a long time, thanks to new drug treatments. However, this may put you at risk for developing other conditions associated with aging, or other longer-term side effects of HIV treatments. Additional conditions you may be faced with could include: musculoskeletal conditions, including joint problems (arthritis), muscle problems and thinning of the bones (osteoporosis); metabolic and endocrine conditions, including diabetes and increased cholesterol and triglycerides; cardiopulmonary system (heart and lungs) conditions. These conditions, for example, heart attacks and stroke, are a major cause of mortality for people living with HIV; neurological conditions including neuropathy (nerve pain resulting in loss of sensation or tingling) and cognitive difficulties (memory loss, difficulty concentrating). Rehabilitation can play an important role in the management of all these conditions. You may also be able to access rehabilitation services targeted specifically to these conditions (for example, you may be able to access arthritis rehabilitation therapy services if you have a diagnosis of arthritis in addition to HIV).
Rehabilitation can play an important role in the management of all side effects.
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Managing your anti-HIV drugs and their side effects

Several types of rehabilitation professionals can help you with the many aspects of managing your anti-HIV drugs: speechlanguage pathologists can help you with problems in swallowing your medications; occupational therapists or pharmacists can help you to develop strategies to deal with complex drug regimens (for example, using pill boxes and timers) and help you deal with the challenges of injectible HIV drugs; physical therapists can help you to deal with physical side effects of your drugs, such as peripheral neuropathy (numbness and tingling) and fatigue. See Chapter 11, Side effects and symptoms, for more information on how to manage side effects that can be caused by anti-HIV drugs.
Your role on the rehabilitation healthcare team

You are an important part of the rehabilitation team and you may have to ask for these supports if your healthcare provider does not offer to connect you to them. It is important to maintain an up-to-date personal health record (see page 317) and to give this to your healthcare provider. Your personal health record should include a list of: medical conditions and surgeries from childhood to the present; drugs, vitamins and herbal supplements you are now taking or have taken in the past and their dosage; treatments you have had, and whether they were helpful or not. When seeing a healthcare or rehabilitation provider, keep these things in mind: make notes with dates of any changes in your condition as well as any side effects from drugs; list any other treatments you have had since your last appointment; bring your health notes to your appointment; bring a family member or friend with you if you need help to remember the information discussed during your appointment;
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be on time for your appointment. If you need to reschedule, phone the office as far in advance as possible; tell your healthcare provider in advance if you may need a longer appointment than usual to discuss questions about HIV or your treatment.
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Resources
The Canadian Working Group on HIV and Rehabilitation Provides references for this chapter and links to a variety of resources and organizations related to HIV and rehabilitation (www.hivandrehab.ca) e-mail: info@hivandrehab.ca
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Women and HIV
While most of the chapters in Managing your health provide information to assist both men and women in living with HIV disease, this chapter offers information specific to HIV-positive womens needs. In this chapter you can find helpful information about how HIV and its treatments affect women differently than men. You can also learn about how HIV affects women throughout their life, including tips on dating and disclosure and how to plan or prevent pregnancy as well as manage menopause. About the author
Shari Margolese has been involved as an active volunteer in the AIDS community since shortly after her own HIV diagnosis in 1993. As a mother of an HIV-positive child, her advocacy efforts have often focused on the needs of the HIV-positive family and the rights of women living with HIV to have children. Shari is currently co-principal investigator on several community-based research projects, including the development of a protocol for fertility and pregnancy care for people living with HIV in Ontario. Currently, Sharis volunteer commitments include working with Voices of Positive Women in Toronto, Blueprint for action on women & girls and HIV in Canada, and ATHENA.
CONTENTS
HIV in women in Canada How is HIV different for women and men? Psychosocial issues for women living with HIV Your healthcare team Gynecological care of women with HIV Pregnancy and HIV Birth control Menstruation and menopause Dating, sex and relationships
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years of age.
HIV in women in Canada

If you are a woman living with HIV, you are not alone! While few women were identified among the early cases of AIDS in Canada, as the years have passed, the epidemic among women has grown. The Public Health Agency of Canada reported that the proportion of women infected with HIV increased dramatically over the 10-year period from 1996 to
Almost half of women testing positive are between 15 and 29
2006. The Public Health Agency of Canada has also estimated that almost half of women testing positive are between 15 and 29 years of age. The risk factors for the majority of new infections among women are heterosexual sex and injection drug use. More that 11,000 women are currently living with HIV in Canada.
Some HIV-related infections and diseases impact women differently than men. Some are specific to women, such as vaginal candidiasis and cervical cancer.
How is HIV different for women and men?

Though many questions about how HIV disease affects women remain unanswered, some information exists about how HIV affects men and women differently. Some HIV-related infections and diseases impact women differently than men. Some are specific to women, such as vaginal candidiasis and cervical cancer. Women with HIV are also more likely than men to develop bacterial pneumonia and recurrent herpes simplex infections. Women are less likely to develop Kaposis sarcoma, an HIV-related infection characterized by purplish lesions on the skin (see Chapter 12, HIV infections and related conditions). Fortunately, effective anti-HIV treatment has made these infections much less common for all people living with HIV. Drug side effects can affect women with HIV differently than men. For example, women are more likely to experience side effects such as rash and severe allergic (hypersensitivity) reactions to the class of anti-HIV drugs called non-nukes (see Chapter 10, Treatments). Both men and women with HIV can have body shape changes called lipodystrophy and lipoatrophy. Women are most likely to see fat gain in the breasts and stomach (see Chapter 11, Side
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effects and symptoms). Women are also more likely than men to develop anemia and bone loss. These gender-based differences may be due to interactions between the drugs and female hormones. Or, they may be because most drug dosing is standardized, based on research done predominantly in men. Women, who in general weigh less than men, may receive unnecessarily high amounts of the drugs. Treatment advocates continue to demand greater inclusion of women with HIV in clinical trials for anti-HIV drugs, as well as for clinical trials that are specifically designed to answer questions about treatment for women with HIV.
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Psychosocial issues for women living with HIV

Each woman experiences HIV differently. However, there are some important generalizations that can be made about womens experience of HIV as a group. Many women are diagnosed with HIV late in the course of their disease. This may be because they and their doctors do not perceive women to be at risk for HIV infection. In addition, women can be adversely affected by the social environment they live in; they may lack stable housing, educational and employment opportunities and steady income. Factors such as these can greatly affect a womans ability to make use of HIV testing and other medical services. Once a woman knows her HIV status, research has shown that she may postpone seeking medical care. The reasons for this include: limited access to health care; geographic location; immigration status; lack of power to determine her own health needs; other household responsibilities, such as childcare or looking after a sick partner; the stigma associated with HIV; unstable housing; lack of income;
Women with HIV are more likely than men to experience drug side effects such as rash and severe allergic reactions. Women are most likely to see the fat gain associated with lipodystrophy in their breasts and stomach. Women with HIV are also more likely to develop anemia and bone loss.
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partner violence; substance use; depression and other mental health issues. These factors can affect womens health and suport services are important to address them. AIDS service organizations can provide services for women with HIV, and in some cities there are organizations specifically for women with HIV.
It is preferable if your doctors have experience with HIV.
Your healthcare team

Women and men should receive the same quality and level of medical care. When women with HIV receive appropriate care and treatment for this disease, they experience similar benefits to those experienced by men. Many women with HIV see different doctors for different needs. They may see an HIV specialist for HIV-related conditions and a family doctor for health matters unrelated to HIV. Women with HIV may also see a gynecologist (a doctor specializing in womens reproductive health), and an obstetrician or fertility specialist for issues related to pregnancy. While not always possible, it is preferable if these doctors have experience with HIV. Your family doctor or infectious disease specialist should be able to make referrals to knowledgeable medical specialists (see Chapter 3, Your healthcare team).
Having HIV can make certain gynecological conditions more common, more serious and more difficult to treat.
Gynecological care of women with HIV

As a woman living with HIV, it is especially important to take care of your gynecological health. Having HIV can make certain gynecological conditions more common, more serious and more difficult to treat. These conditions include: some vaginal infections, including yeast infections and bacterial vaginosis (an infection that changes the normal balance of bacteria in the vagina); sexually transmitted infections such as gonorrhea, chlamydia, herpes and syphilis; pelvic inflammatory disease (a potentially serious bacterial infection of the reproductive system).
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It is very important for women with HIV to schedule annual Pap tests with their doctor. A Pap test checks for changes in the cervix. An abnormal Pap test can indicate problems requiring closer observation or immediate treatment. Women with HIV are more likely than HIV-negative women to have abnormal Pap test results, especially if they have a lower CD4+ cell count. During a Pap test your doctor will do an internal examination of the vagina and take a small sample of cells from your cervix. You may feel some discomfort. While doing the Pap test, the doctor should also perform an external examination of the vulva to check for such conditions as herpes and genital warts (see Chapter 7, Your sexual health, and Chapter 9, Monitoring your health). Cervical dysplasia, an abnormal growth of cells of the cervix that can be detected by a Pap test, is more common in women with HIV, especially in women with advanced HIV disease. It is often more severe and difficult to treat than in HIV-negative women. Early detection and treatment can prevent the progression of dysplasia to cervical cancer, a life-threatening illness. Cervical dysplasia is caused by an infection with a virus called human papillomavirus (HPV). HPV is a sexually transmitted virus that can also cause genital warts (see Chapter 7, Your sexual health).
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Women with HIV should schedule annual Pap tests with their doctor. Cervical dysplasia, an abnormal growth of cells in the cervix that may lead to cancer, can be detected by a Pap test. Cervical dysplasia is more common in women with HIV, especially those with advanced HIV disease.
Pregnancy and HIV

Advances in HIV treatment and prenatal care for women with HIV have improved their health and greatly reduced the risk of transmitting HIV to their babies (see below). Now, many women are considering pregnancy and having healthy, HIV-negative children. In spite of the fact that women with HIV can have healthy children, women who have told others about (disclosed) their positive HIV status may face stigma and discrimination if they choose to have a child. This is often because other people do not know the medical facts about HIV and pregnancy. On the other hand, among women who have not disclosed their HIV status to others, there may be family or cultural pressures to have children. These women may face stigma if they choose not to have children.
Many women are considering pregnancy and having healthy, HIV-negative children.
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Some women with HIV become pregnant without planning it. Or, some women may find out they have HIV at the same time they find out they are pregnant. This can be a lot of news to deal with at once. You will face questions about how to proceed with your pregnancy. You may decide to keep your baby, you may consider having an abortion or you might think about putting your baby up for adoption. Talk with your doctor, a counsellor at your local AIDS service organization or someone you trust about how to get more information and support so that you can make the decision that is right for you.
Stopping vertical transmission of HIV

There are many names for how HIV is transmitted. When HIV passes to a fetus or baby from an HIV-positive mother, it is called vertical transmission. It is also sometimes called mother-to-child transmission or perinatal transmission. When HIV passes between sexual partners or people who share needles, this is called horizontal transmission. In the absence of quality prenatal care that includes anti-HIV treatment, HIV may be transmitted from a woman to her child in the womb, during labour and
Effective HIV treatment strategies can reduce the risk of mother to child transmission to less than 2 per cent.
delivery or through breastfeeding. Without proper treatment and care, the risk of mother-to-child transmission is approximately 25 to 30 per cent. However, doctors now know that following certain treatment strategies can reduce the risk of vertical transmission to less than two per cent (two chances in one hundred). These strategies involve: diagnosing HIV in the mother through prenatal screening; providing good medical care for pregnant women with HIV; giving anti-HIV treatment to the woman during pregnancy, labour and delivery; considering delivery by Caesarean section; giving anti-HIV treatment to the newborn for a brief period after birth; not breastfeeding. For more information about the details of these strategies, talk with your doctor.
Having a healthy pregnancy

Good health is very important while you are pregnant, and there are many
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things you can do to help yourself have a healthy pregnancy. First, it is important that you get good medical care. Try to find an obstetrician (a doctor who specializes in pregnancy and childbirth) who is familiar with HIV care. It is best to do this before you get pregnant, or soon after. Your HIV doctor can help you. You should receive the same level of care that is available to any woman who is pregnant. Research shows that pregnancy itself does not make your HIV disease worse and HIV does not change how your pregnancy proceeds. Still, doctors say a pregnancy is high risk if there is any illness or infection, including HIV. This means that you may have more frequent visits to the doctor to monitor your health and the health of your fetus. Treating your HIV infection and reducing the amount of virus in your blood (your viral load) during pregnancy is one of the most important ways to reduce vertical transmission. Your doctor will talk with you about taking anti-HIV treatment. When choosing your drugs, you should consider a combination that is tailored to your health and needs and that will reduce the risk of vertical transmission. In addition to anti-HIV drugs, there are many things you can do to help have a healthy pregnancy. These include: make sure that your doctor tests and treats you for sexually transmitted infections (see Chapter 7, Your sexual health); make sure that your doctor tests you for hepatitis B, group B streptococcus status and rubella immunity; eat a healthy diet; find healthy ways to deal with stress; take a daily prenatal multivitamin (prenatal vitamins are different from regular multivitaminsmake sure you get the right one); stop or reduce smoking, drinking alcohol and using recreational and street drugs; put together a support network, including family members, friends and supportive staff at your local AIDS service organization or HIV clinic. If you are pregnant and drinking alcohol or using drugs, cutting down or stopping will increase your chances of a healthy pregnancy. Some women may not
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Pregnancy itself does not make your HIV disease worse and HIV does not change how your pregnancy proceeds.
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be able to stop completely or stop without help. Speak to your doctor or someone you trust to help you find the resources you need to keep you and your baby as healthy as possible.
How will I know if my baby is HIV-positive?

If you receive good care during your pregnancy and delivery, chances are minimal that your child will be HIV-positive. Even so, your healthcare team will monitor your baby for the first few months after birth. Your baby may receive three or four HIV tests before getting a definitive result as to his or her HIV status. Babies are tested for the presence of HIV with a test called a PCR test, which looks for the virus itself. Tests for adults usually look for the HIV antibodies, the bodys response to HIV. Adult tests do not work in babies because all babies born to women with HIV carry their mothers antibodies for up to 18 months after birth. These antibodies disappear with time. Just having their mother's antibodies in their blood, does not mean that a baby has HIV infection. The PCR test is the only way to see if the baby is infected or not. HIV-positive babies are diagnosed between six weeks and four months
There are many ways that a woman living with HIV can attempt to conceive while not transmitting HIV to her partner or her baby.
after birth using PCR testing. However, with anti-HIV treatment, the chance that your baby will be HIV-positive is less than two per cent. Even if your baby is HIV-positive, it is possible for him or her to live a long and healthy life with HIV. Many children with HIV are now active teenagers and young adults. Some are even planning families of their own!
Becoming pregnant
For women with HIV, pregnancy raises particular issues. First, women are worried about transmission of HIV between partners while trying to conceive. As well, women with HIV may find it more difficult to conceive than HIV-negative women. It is not clear if it is HIV, its treatment or possibly co-infection with other sexually transmitted infections that contribute to infertility in women with HIV. Fortunately, there are many ways that a woman living with HIV can attempt to conceive while not transmitting HIV to her partner or her baby. Many women with HIV who have HIV-negative or same-sex partners try alternative insemination. This is the process of collecting the sperm from their partner or sperm donor in
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a condom or cup and inserting the sperm into the womans vagina using a syringe. This process is often done at home. If a woman is not able to conceive using this method, she may require intrauterine insemination with medical assistance. During intrauterine insemination, a small tube is inserted into the womans cervix and the sperm is injected with a syringe. There is no unprotected contact between partners, so there is no risk of HIV transmission. When an HIV-positive womans male partner is also HIV-positive, his sperm can be chemically washed to remove the HIV. This sperm washing technique greatly reduces the risk of transmitting virus between HIV-positive partners, thereby avoiding re-infection with a different strain of HIV or with other infections. This technique can be used when a man with HIV wants to father a child with an HIV-negative woman. Access to assisted reproduction techniques like these is very limited overall, and you may need to travel to another province in order to get the services you need. You can contact CATIE for more information about fertility clinics in your region. Some partners decide to conceive using natural methods. That is, they have unprotected sex. This method can have a high risk of transmitting HIV between partners, especially if it is the male partner who is HIV-positive, and so doctors do not recommend this method to conceive. People who do not use condoms often take other precautions to minimize the risk of passing HIV. Research has revealed that one of the most important precautions is reducing the viral load of the positive partner to undetectable levels. Sustained suppression of the virus in the blood generally (but not always) means a lower level of virus in the semen or vaginal fluids. Another precaution is to ensure that neither partner has a sexually transmitted infection, lesions and abrasions or a condition that causes inflammation of the reproductive organs, such as bacterial vaginosis. Lesions, abrasions and inflammation increase the chance of transmitting HIV. As well, couples choosing to have unprotected sex to conceive often limit exposure to the few days around ovulation when the woman is most likely to become pregnant. Your healthcare provider can teach you how to recognize signs of ovulation so that you have the best chance of becoming pregnant.
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Birth control
Many women with HIV choose to use birth control. Having HIV can make choosing a birth control method more complicated because women with HIV must consider other factors such as the need to stop HIV transmission and the potential for interactions between anti-HIV drugs and some hormonal contraceptives. Male and female condoms are often used as birth control by women and men with HIV because they are the only birth control method that also
Having HIV can make choosing a birth control method more complicated because women with HIV must consider other factors such as the need to stop HIV transmission and the potential for interactions between anti-HIV drugs and some hormonal contraceptives.
effectively reduces HIV transmission. There are numerous benefits to using condoms: female and male condoms are the most effective ways to prevent the transmission of HIV and many other sexually transmitted infections; condoms are up to 98 per cent effective at preventing pregnancy if used correctly; the female condom is the only female-controlled method of birth control that also provides protection from HIV and sexually transmitted infections. the female condom can be inserted prior to a sexual encounter; you dont need a prescription to buy condoms. There are drawbacks to using condoms: condoms can break if not put on correctly; using a male condom requires full co-operation from your male partner; condoms are perceived by some to decrease sexual pleasure; female condoms are expensive and not available everywhere in Canada. For more information about condoms, see Chapter 7, Your sexual health. Additional birth control methods can also be used to further reduce the risk of becoming pregnant, although they have no effect on HIV transmission risk. Before deciding on a birth control method to use with condoms, an HIV-positive woman should consider some important questions. Will this birth control method interact with my anti-HIV drugs or other drugs I am taking? Will it increase the chance of transmitting HIV to my partner? How well can I incorporate it into my lifestyle? How effective is it at preventing pregnancy?
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How safe is it? How affordable is it? How will it impact my chances of getting pregnant in the future if I choose to? Currently available contraceptive methods include: hormonal contraceptives; diaphragms and cervical caps; spermicides; permanent birth control; natural birth control, such as the rhythm method; emergency contraception or the morning after pill. Hormonal contraceptives are available in many forms. Some (such as the birth control pill) are taken orally. Some are injected and others are inserted into the vagina (either at home, such as vaginal rings or sponges, or by a doctor in the case of an intrauterine device). There is also a patch available that provides birth control medication through the skin. Depending on which method you choose, you will need to use hormone methods daily, weekly, monthly or yearly. Benefits of hormone-based birth control: they are very effective (97 to 99 per cent) in preventing pregnancy; they may reduce the risk of several medical conditions, including certain cancers of the reproductive organs, pelvic inflammatory disease, noncancerous growths of the breasts and ovaries, and thinning of the bones (osteoporosis). Drawbacks of hormone-based birth control: they are not effective against HIV and other sexually transmitted infections; they can have many possible side effects, including an increased risk of blood clots, heart attack and stroke, especially if you smoke. Many hormone-based birth control methods can interact with anti-HIV drugs. These interactions can decrease the effectiveness of the hormones in preventing pregnancy. These interactions may also decrease the effectiveness of the antiHIV drugs. If this happens, HIV may develop resistance and future treatment options may be reduced. In all cases, it is important to discuss drug interac-
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Many hormone-based birth control methods can interact with anti-HIV drugs.
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tions with your doctor before choosing a hormone method. For more information about drug resistance and how it can develop see Chapter 10, Treatments. Diaphragms and cervical caps are small devices that fit over the cervix at the end of the vagina. Both need to be fitted by a doctor and used with a spermicide cream or jelly. They are less effective than condoms at preventing pregnancy because they do not prevent the sperm from entering the vagina. Benefits to using diaphragms and cervical caps: they are very effective in preventing pregnancy if used correctly; there are usually few to no side effects; they cannot usually be felt by either partner. Drawbacks to using diaphragms and cervical caps: they do not offer protection against HIV and other sexually transmitted infections; they may be difficult to insert. Spermicides are available in foams, jellies, creams and suppositories (small capsules of medicine that are inserted into the vagina). They work by killing sperm before it has a chance to reach the cervix. Spermicides are only about 70 per cent effective in preventing pregnancy and offer no protection against HIV and other sexually transmitted infections. Spermicides do not kill HIV and, in fact, may increase the risk of HIV transmission by irritating the skin in the vagina and rectum. They should not be used as a means of preventing HIV transmission. Permanent birth control (sterilization) involves a surgical procedure that can be performed on a woman (tubal ligation) or a man (vasectomy). During a tubal ligation procedure, a doctor closes or blocks a womans fallopian tubes so that the egg cannot travel to the uterus and be fertilized. During a vasectomy, a doctor closes or blocks the tubes that carry sperm so that it cannot leave the body. These procedures are almost 100 per cent effective against pregnancy; however, they are not effective against HIV and other sexually transmitted infections, and condoms must still be used to prevent transmission. Natural birth control methods include abstinence, sex without intercourse, withdrawal of the penis from the vagina before ejaculation, and fertility awareness-based methods, such as the rhythm method, that rely on closely monitor-
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ing the womans ovulation cycle and restricting intercourse to when she is least likely to become pregnant. Abstinencenot having intercourse at allis 100 per cent effective. Other natural birth control methods are only partially effective in preventing pregnancy but offer no protection from HIV and other sexually transmitted infections. Withdrawing the penis before ejaculation does not decrease the risk of transmitting HIV because the virus is present in the pre-cum that leaks out prior to ejaculation. Emergency contraception can be used to help prevent pregnancy after unprotected sex. The morning-after pill is sold over the counter from your pharmacist and is known as Plan B. It can be effective in reducing the risk of pregnancy if started within three days after unprotected sex. It offers no protection against HIV and other sexually transmitted infections. You may be thinking about ending your pregnancy by having an abortion. You may feel you cannot care for a child at this time, or you may have other reasons. Having an abortion is a very personal choice, and only you can decide whether or not to continue your pregnancy. No one can force you to have a baby or force you to end your pregnancy. You may want to know more about abortion. You can discuss your options with your doctor or nurse. Some women worry that having an abortion will make it harder to get pregnant again. Most women go on to have normal healthy pregnancies after an abortion.
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Menstruation and menopause

Throughout their reproductive lives, many women with HIV experience irregularities in their menstrual cycle such as spotting between periods, heavy bleeding or no bleeding at all. Studies have found that menstrual irregularities are more common in women who have low CD4+ cell counts, high viral loads, who are significantly below their ideal body weight or use intravenous drugs, such as heroin or methadone. Menopause is the point in a womans life when her menstrual periods have completely stopped. This usually happens roughly around the age of 50 in HIVnegative women. In women with HIV, it may occur earlier.
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A woman can usually tell she is approaching menopause because her periods start changingthey may lengthen, shorten or grow irregular. This time is called perimenopause. During perimenopause and menopausea period which can last several yearshormone levels fluctuate and you can expect to experience symptoms such as: increasingly irregular menstrual periods; hot flashes; night sweats; vaginal dryness; frequent urination; skin changes, including thinner skin, wrinkling and acne; trouble sleeping; fatigue; lack of sexual desire; forgetfulness;
Symptoms of menopause may be difficult to distinguish from symptoms of HIV.
emotional changes; depression. In addition, some women with HIV have lower CD4+ counts after menopause. Symptoms of menopause may be difficult to distinguish from symptoms of HIV. For example, women with HIV may experience irregularities in their menstrual cycles even if theyre not going through menopause. Similarly, women with HIV who experience hot flashes at night may be misdiagnosed as having night sweats that are common with untreated HIV. Vaginal dryness can be mistaken for a yeast infection. It is important to keep track of your menstrual cycles and discuss menopause with your doctor to avoid a misdiagnosis or unnecessary hormonal treatments. Whatever stage of your life, it can be helpful to have your hormone levels checked. After menopause, all women are at increased risk of thinning bones and fractures, heart disease and other conditions related to aging. Women with HIV may face an even greater risk of these if they are taking anti-HIV drugs. See Chapter 11, Side effects and symptoms, and Chapter 18, HIV and aging, for more information on these issues.
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Tips to help stay healthy after menopause.

Eat a healthy diet (see Chapter 4, Healthy living). Supplement your diet with calcium and vitamin D3 daily to help prevent bone loss. Quit or cut down on smoking. Drink alcohol moderately. Perform exercise such as aerobics, swimming, running or brisk walking for 30 minutes three times a week and include weight-bearing exercises in your program. Talk to your healthcare provider about the following tests and exams: mammogram; gynecological exam and Pap test; bone density scan; blood tests for lipid levels; colonoscopy. (See Chapter 9, Monitoring your health, for more information on tests.)
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Women with HIV
Dating, sex and relationships

Women with HIV can date, have active sex lives and build healthy relationships. At the beginning of any relationship, getting to know someone new can be complicated. Adding HIV to the mix makes things even more so. If you are dating someone new, in a relationship or considering one, questions about safer sex and when to disclose your status may be on your mind. Just as each HIV-positive woman is unique, so is her approach toward whom she tells about her HIV-positive status. Disclosure is often based on a womans own experience in relationships. Some women choose to disclose their status before the first date. The benefits to this approach include reducing the stress of keeping a secret. Alternatively, some women prefer to wait until they get to know the person better.
can date, have active sex lives and build healthy relationships.
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People with HIV do have a legal obligation to disclose their HIV status before they put another person at significant risk of exposure to HIV. The legal definition of significant risk is evolving, but definitely includes vaginal or anal sex without a condom. Women who share drug injection equipment with their partners are also obliged to disclose their HIV status before shooting. See Chapter 21, Legal issues for more details about the legal obligation to disclose your status. It is best that you talk with any potential sexual partner about your HIV status before the relationship becomes sexual. A small number of women have been charged for transmitting or exposing a sexual partner to HIV when they had not disclosed their HIV status to them. To protect yourself against people who might claim you never disclosed your status, it is a good idea to document your disclosure. You might consider making an appointment for your partner to visit your HIV doctor. Your doctor can then make sure that your partner understands the risks of infection, and can also record the discussion to confirm that disclosure took place. If you are diagnosed with HIV while in a relationship, it is important that you tell your current partner about your status as soon as possible. This can be an especially difficult task if you rely on your partner for food, shelter, protection or drugs. You may fear losing the relationship and the benefits it provides when you disclose. While this can happen, your partner may also be very supportive. For assistance with the difficult task of telling your partner, a counsellor at your local HIV clinic or AIDS service organization or a public health nurse can help. Some women are in abusive relationships and fear violence if they tell their partner that they are HIV-positive. If you are in this situation, it is important that the disclosure takes place in a safe environment and you have a plan in place for your safety. Again, a doctor, friend, counsellor or public health nurse may be able to help.
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Resources
Websites for women living with HIV Voices of Positive Women (www.vopw.org) Positive Womens Network (www.pwn.bc.ca) The Centre for AIDS Services of Montreal (www.netrover.com/~casm/) The Well Project (www.thewellproject.org) Sisters are Doing it for Themselves Special issue of the Positive Side magazine for women living with HIV You can have a health pregnancy if you are HIV positive Comprehensive information for women living with HIV who are pregnant or planning for pregnancy The Positive Side Health and wellness magazine contains articles about women and HIV, such as: 10 things you dont know about HIV+ women The goddess flesh club From diapers to disclosure Look in the e-zine index (www.positiveside.ca) Plain and Simple Factsheets on health issues for women living with HIV Available in multiple languages In-Depth Factsheets on health issues for women with HIV Comprehensive information for people living with HIV and their care providers Pocket guide for women living with HIV Booklet from the Positive Womens Network in British Columbia (www.pwn.bc.ca)
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Children and HIV

Many people living with HIV have children in their lives. Some of us may have our own children, while others may have special relationships with nieces, nephews, grandchildren or children of our friends and partners. Whether they are living with HIV themselves or affected by your HIV status, the tips in this chapter will help you to provide care and support to your children. Sections of this chapter were adapted by Shari Margolese from Amy Buch, Talking with Your Children About your HIV Status or Your Childrens Status (www.thewellproject.com), July 2005 and from Shari Margolese, Talking with Your Children about HIV: HIV Awareness for Children (www.thewellproject.com), July 2005.
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CONTENTS
What if my child is HIV-positive? HIV in children HIV treatment for children Talking to children about HIV
About the author

Shari Margolese has been involved as an active volunteer in the AIDS community since shortly after her own HIV diagnosis in 1993. As a mother of an HIV-positive child, her advocacy efforts have often focused on the needs of the HIV-positive family and the rights of women living with HIV to have children. Shari is currently co-principal investigator on several community-based research projects, including the development of a protocol for fertility and pregnancy care for people living with HIV in Ontario. Currently, Sharis volunteer commitments include working with Voices of Positive Women in Toronto, Blueprint for action on women & girls and HIV in Canada, and ATHENA.
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with HIV.
What if my child is HIV-positive?

In recent years, very few children in Canada have been born HIV-positive. In fact, with effective anti-HIV treatment for both mother and infant, along with adequate prenatal care and no breastfeeding, less than two per cent of babies born to women with HIV are actually infected with HIV. But, for the small number
With effective anti-HIV treatment for both mother and infant, along with adequate prenatal care and no breastfeeding, less than 2 per cent of babies born to women with HIV are actually infected
of parents who are faced with the positive diagnosis of their child, these statistics are of little comfort. The first thing to remember is that it is not your fault! No parents want their children to have HIV. What is comforting, however, is the knowledge that most children born with HIV in Canada live long, productive and healthy lives. Many of these children are now young adults planning for their futures, attending school, playing sports, dating and planning families of their own. Raising an HIV-positive child is not without challenges. Not only do you need to learn about how to manage your health, but also the health of your child. Having knowledge of how HIV affects children differently is helpful in making informed decisions about your childs health.
HIV in children
You may wonder, is HIV different in children? For the most part, HIV acts the
Most children born with HIV in Canada live long, productive and healthy lives.
same way in children as it does in adults. However, there are some differences. You may go to the doctor with your child and find that his or her CD4+ cell counts are much higher than yours. This is because children normally have much higher CD4+ cell counts to begin with. This is also true of viral load (the amount of HIV in the blood). Childrens CD4+ cell counts and viral load levels usually reach adult levels when they reach puberty. Another difference between children and adults is that childrens immune
For the most part, HIV acts the same way in children as it does in adults.
systems are still developing. There is not much research available to know exactly what effect HIV has on the developing immune system, but we do know a few things. For example, HIV-positive children tend to get more bacterial infections, like pneumonia or sinusitis. They may also tend to have more diarrhea or thrush.
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Some HIV-positive children also get warts and molluscum contagiosum (a bumpy skin rash). Adults can get these, too, but they can be harder to treat in children.
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for your child.
Preventing illnesses
It can be scary when HIV-positive children get sick, especially when they are very young. With every sniffle you may feel that your child has a serious illness. Rest assured, while some children do get seriously ill, most HIV-positive children who have access to regular health care, drugs and good nutrition generally enjoy good health. Preventing illness is not always possible, but there are some things you can do to help your child stay healthy. Many of the things you can do to help keep your child healthy are similar to keeping yourself healthy, but there are some exceptions. For example, just as it is important to find an experienced doctor to manage your HIV care, you also need to find a doctor for your child. Usually, your obstetrician, family doctor or infectious disease specialist can refer you to a pediatric infectious disease specialist (childrens HIV doctor) to care for your child. If there are no specialists where you live, you may have to travel for appointments or work with another infectious disease specialist and general pediatrician near your home. You can find out more about the healthcare team in Chapter 3, Your healthcare team. One of the most important things you can do is to make sure your child is vaccinated and that vaccinations are kept up to date. Most HIV-positive children can receive the same vaccines that other children receive. These include: diphtheria, tetanus, pertussis (DTaP) vaccine; polio (IPV) vaccine; H. flu type B (HiB) vaccine for meningitis; pneumococcal vaccine; and hepatitis A and B vaccines. Other vaccines depend on your childs CD4+ cell count. If the CD4+ cell count is high enough, your child can receive chicken pox and mumps, measles and rubella vaccines. For children who have seriously weakened immune systems, these vaccines can cause illness and should only be used in consultation with your childs HIV doctor. Good hygiene, including hand washing, along with a healthy diet can also go a long way to reducing your childs chance of becoming ill.
Just as it is important to find an experienced doctor to manage your HIV care, you also need to find a doctor
One of the most important things you can do is to make sure your child is vaccinated and that vaccinations are kept up to date.
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HIV treatment for children

Making treatment decisions for our HIV-positive children can be very stressful. Adults usually ask themselves and their doctors, am I ready to start treatment, what treatment should I take, how often do I have to take it and how will it affect me? The same questions can be asked when deciding on treatment for our children. Finding a knowledgeable care provider and becoming familiar with
Recent research has shown that it may be beneficial for children to start drugs as early as three months of age. Starting early may reduce the chance that your child will become sick in the future. You should make this decision together with your childs doctor.
treatments for children can help in your decision making. Is your child ready to start treatment? Usually, when adults ask this question they factor in viral load, CD4+ cell counts and their financial and emotional readiness to start. When it comes to making this decision for our kids, there are a few extra considerations. In the past, anti-HIV drugs were started if children had a high viral load or failed to thrive. (This means not reaching normal milestones of growth and development.) Recent research has shown that it may be beneficial for children to start drugs as early as three months of age, whether or not they reach these important milestones. Starting early may reduce the chance that your child will become sick in the future. You should make this decision together with your child's doctor. What treatment should your child take? There is not as much information available about the use of anti-HIV drugs in children as there is for adults. Many, but not all, of the treatments available for adults are also available for children. Young children usually receive doses of drugs based on their weight. Once children reach adult proportions, adult doses are given. See Chapter 10, Treatments, for more information on anti-HIV drugs.
How often does my child need anti-HIV drugs?

Just like adults, children need to take their anti-HIV drugs consistently. Dosing schedules will depend on which drugs your child is taking. Whatever drug
Getting children to take medicine can be a real challenge.
treatment your child is on, he or she should take the drugs at the same times each day. Some anti-HIV drugs need to be taken with food while some do not. When talking with your childs doctor about which anti-HIV drugs your child will take, think about your day and your childs schedule. Think about how you will fit work, school and childcare into your childs drug dosing schedule.
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Getting children to take medicine can be a real challenge. Children might not like how the drugs taste or might have trouble swallowing pills. Older children, especially teenagers, may hide pills or pretend to take them. Try to involve your child in filling dosettes, preparing liquid formulations and other medicine-related tasks. Remember that you are training your child for a lifetime of taking medicine on his or her own. You may want to reward your child after he or she takes the medicine by offering a small food treat or sweet drink, such as chocolate milk or a favourite juice, to wash it down. Many parents feel tremendous guilt when giving their children drugs. Remember, by giving your child anti-HIV drugs regularly you are helping to keep him or her healthy and doing what is best for your child. (Even if it doesnt feel that way sometimes!)
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Anti-HIV drugs should make your child feel better, have fewer infections and grow at a normal rate. However children, like adults, can also experience side effects from anti-HIV drugs.
How will anti-HIV drugs affect my child?

Generally, anti-HIV drugs should make your child feel better, have fewer infections and grow at a normal rate. However children, like adults, can also experience side effects from anti-HIV drugs. Some children are too young to tell you just how they feel so it is important that you keep track of changes in eating habits, body functions, skin changes (such as rash), sleeping patterns and other functions and habits. These can give you a hint that your child may not be tolerating his or her drugs. Older children should be instructed to tell you if they are not feeling well or if their bowel movements change. Be sure to discuss any changes with your childs doctor. Just like adults, how children experience side effects is very individual and will also depend on which drugs he or she is taking. Your childs doctor can tell you what side effects your child may experience. If your child is not tolerating the anti-HIV drugs well, you can also talk to your doctor about the possibility of switching to a different drug combination (see Chapter 11, Side effects and symptoms).
Talking to children about HIV

Talking to children about HIV is a scary idea for most adults, especially when there is HIV in the family. The thought of disclosing either your HIV status or your childs can be overwhelming and full of emotions. Rest assured that what you are feeling is normal and that most parents feel frightened, anxious or guilty.
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Just like telling another adult that you are HIV-positive, talking to your kids about HIV takes thought, timing and planning. You may want to enlist the help of a friend, family member or healthcare provider, such as a doctor or counsellor who knows you and your child. Here are some other helpful tips to consider before you disclose: share your disclosure plan with people who already know. They can support you and your child; know the facts about HIV, including basic information such as how HIV is transmitted (and how it is not); consider timing: are you ready to tell, and is your child ready for this information? Every parent has his or her own style when talking about important subjects. Some parents choose to have a specific time when the family will sit down and formally discuss HIV. They may present pamphlets or other resources to help children understand the facts. Other parents take cues from their children and the environment to introduce the subject of HIV. For example, they may try to bring up the discussion when their children see or hear something about HIV on TV. Ask what the children have heard and what they know about HIV. This will help you figure out what they already know and what is left for you to explain. Take some comfort in what you know: how your children learn new information, what your children may already know about HIV and what feels most supportive to your family. Use this knowledge to decide how to disclose about HIV to your family. While there may not be an exact best way to disclose, there are some steps you can take to prepare. For more information on disclosure, see Chapter 6,Your emotional health, and Chapter 21, Legal issues.
Talking to your kids about HIV takes thought, timing and planning.
Its never too early to talk to your children about HIV.
Talking to children of different ages

Its never too early to talk to your children about HIV. In fact, by the third grade, most children have already heard about it. Talking to children about HIV is not a one-time-only conversation. Children will be ready to accept different levels of information at different ages. Talk early and talk often to ensure your children have age-appropriate information throughout their childhood. Toddlers/preschoolers Very young children are unable to fully understand things such as disease, death or sex. They are, however, able to learn basic
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infection control information such as washing their hands and using a tissue. They can learn in the simplest of terms to keep their germs to themselves. This is also a good age to teach children the correct names for their body parts and lay the ground for a supportive and open relationship with them. School-age children Children 5 to 8 years old are just learning about health, sickness, death and sex. They can understand that HIV is a serious health problem that is caused by a virus, and that their chances of getting HIV are very small. In fact, by the third grade, most children have already heard about HIV. You dont have to discuss sex at this age. However, you can continue to reinforce to children that some body fluids carry infection and should not be exchanged. Use opportunities such as scrapes and cuts to teach about how HIV can be transmitted. Children with HIV may begin to ask questions such as why do I have to go to the hospital and my cousin/sister/friend doesnt? and why do I have to take medicine? Be prepared to answer these questions with full or partial information. Answers such as, because you have a virus in your blood or because you need medicine to stay healthy often will satisfy the curiosity of school-age children.
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Disclosing your childs HIV status to others

Many parents of children with HIV feel that the most difficult decisions that they face are related to the disclosure of their childs HIV status to others. Disclosure to day care, schools and similar settings is of particular concern. The laws which protect the rights and confidentiality of all people with HIV mean that you do not have to tell anyone that your child has HIV. However, many families feel that the best situation for their child in these settings is one where they can disclose fully or partially in an atmosphere of trust. Families who have successfully disclosed their childs HIV status in schools and day care settings have often been supported by the childs healthcare providers, who can provide any information that is required. Free from fear of discrimination, the benefits of disclosure include increased confidence and reduced fear for the child; reduced isolation and anxiety; increased support for the family; and increased HIV/AIDS awareness and sense of community for the school.
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of their lives.
Preteens Children 9 to 12 years old think a lot about their bodies. This is the time to tell them exactly how HIV is spread. Since HIV is commonly spread by sexual contact, now is the time to give your children correct information about sex. Warn them of the dangers of casual and unsafe sex. Let them know that needle or syringe sharing for intravenous drug use, steroid injection, tattooing or body piercing can put them at risk for getting HIV. Teach pre-teens that they have choices in life and that decisions they make today could have an effect on the rest of their lives. HIV-positive pre-teens often know their own status by this age. Help them devise coping techniques if HIV is a secret outside of your
Teach pre-teens that they have choices in life and that decisions they make today could have an effect on the rest
home. Telling a child that he or she may face stigma due to his or her HIV infection is often more difficult for parents than telling the child he or she has HIV. Children at this age may become angry if they are being told they are HIVpositive. HIV-positive parents can expect challenging questions such as if I got it from you, then how did you get it? For some parents, disclosing how they were infected is more difficult than telling their children they are HIV-positive. It is helpful to have support from your own counsellor to work through any disclosure fears you may have. Teens Children aged 13 to 19 are more concerned with their self-image and friendships than what their parents have to say. Many teenagers take risks and feel that it wont happen to me. This could mean many things, including not practising safer sex and becoming infected with HIV for HIV-negative kids, or for HIV-positive kids, not taking anti-HIV drugs regularly and getting sick. During
Help your teen connect with other HIV-positive children his or her own age.
this crucial time, it is important to continue to provide your teen with accurate information about HIV and safer sex. HIV-positive teens must also be told about the legal implications of non-disclosure. They will also begin to make decisions about disclosing to friends. Try to give them helpful tips on whom to tell and when. If possible, help your teen connect with other HIV-positive children his or her own age. You may wish to provide resources such as books and videos that they can view on their own. Teenagers who are just finding out that you are HIV-positive or they are HIV-positive may feel that you didnt trust them enough to tell them. Try to reassure them it is not about trust, but rather not wanting them to worry too much.
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Disclosing to children
While it can be extremely difficult to disclose HIV information to children, it is better to tell your children as early as you can, especially once they start asking questions. It is usually easier to tell the truth than try and cover up the diagnosis. Once children know, the family can start discussing things openly and dealing with the feelings that come up. The following tips may ease disclosure for you and your children: deal with your own feelings first. Gain control over your own emotions and learn to live with the diagnosis; build a strong parent-child relationship; seek out support for yourself from friends, social workers, counsellors and others both before and after disclosure; prepare by gathering HIV-related information, creating an appropriate environment and arranging supports for your children; find a time to disclose that is free from interruptions and appointments; try to be as relaxed as possible before the conversation begins. Your children might notice if you are feeling anxious, sad or angry; disclosure is a process. Even if your children do not react the way you hoped right away, with time, support and information, they may be more accepting; encourage your children to ask questions as they come up; give reassurance and hugs!
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While it can be extremely difficult to disclose HIV information to children, it is better to tell your children as early as you can, especially once they start asking questions.
Resources
Websites for parents and children living with HIV The Well Project (www.thewellproject.com) The Teresa Group (www.teresagroup.ca) Youth HIV Site (www.livepositive.ca/english/default.asp) Pediatric Treatment Issues Collection of articles and resources for families and children living with HIV (www.thebody.com/index/treat/children.html)
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Talking to kids about HIV/AIDS Booklet from the Canadian Public Health Association
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Immigrants, refugees and non-status people with HIV

The Canadian immigration and refugee system can be complex, confusing and intimidating for newcomers, especially when they are not sure how their HIV status may affect their chances of becoming Canadian citizens. This chapter provides basic information about the Canadian immigration and refugee system and how it affects people with HIV from other countries. It describes mandatory HIV testing for immigrants, services for people going through the immigration process, and information on how some communities have dealt with the challenges that immigrant, refugee and non-status people with HIV face.
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CONTENTS
The Canadian immigration system and HIV Immigrants, refugees and non-status people Immigration and HIV testing Services available to immigrants, refugees and non-status people with HIV
About the author

Alan Li is an HIV primary-care doctor, researcher, community organizer and activist who has been working on issues of anti-racism, social justice, immigrant/refugee rights, sexual minority rights, HIV/AIDS and community capacity building for more than 20 years. Alan is a co-founder of Asian Community AIDS Services, the Ethno-racial Treatment Support Network and is the co-chair of the Committee for Accessible AIDS Treatment, which is dedicated to improving access to treatment and care for marginalized people living with AIDS and to fostering leadership in this community of people.
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The Canadian immigration system and HIV

Immigrants and refugees represent an increasing proportion of people living with HIV in Canada. This points to the need for equitable services in prevention education, treatment and support for immigrants and refugees who are infected and affected by HIV. Immigrants and refugees with HIV face complex demands: the trauma and challenges of the migration journey, the complex and confusing Canadian immigration and refugee system, the challenges of adapting to a new culture and lifestyle, difficulties with access to housing, and employment and stigma and discrimination in their own ethno-racial communities and in larger society. They also face barriers in accessing HIV-related information, treatment and support related to language and culture, health literacy and systemic discrimination. All these demands and barriers have a significant impact on their health, well-being and ability to participate as equal members of society.
Routes of immigration to Canada
Immigration application
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The Canadian immigration system is not only complex and confusing, it is very intimidating for newcomers to deal with. People with HIV have tremendous fear and concerns about possible exclusion because HIV testing is a mandatory part of all newcomer applications. People can become a resident of Canada through one of two major routes: by applying as an immigrant; by filing a claim as a refugee. The processes for application and the criteria for acceptance are very different for immigrant and refugee applicants. How HIV status may affect the outcome is also different. In addition, different categories of immigrant/refugee applicants have different entitlement to benefits and service access.
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Immigrants and refugees
Immigrants, refugees and non-status people

Immigrants
Immigrant aplications can be divided into two categories: sponsored immigrant Family Class or independent immigrant. Sponsored immigrant Family Class can include any family members of someone who is already a Canadian citizen. This includes family members by birth or adoption; however, some are given higher priority than others. In general, first-degree relativesspouse, common-law partner and dependent childrenare given the highest priority; The applications for independent immigrants are evaluated by a point system based on various criteria, such as their education, profession, language ability and relationship to Canadians. Independent immigrants include a whole range of applicants, including skilled workers, entrepreneurs and investors. In addition, there are other special programs of sponsored immigrants, such as a program for live-in caregivers.
with HIV are faced with complex demands. These demands and barriers have a significant impact on these peoples health, well-being and ability to participate as equal members of society.
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Refugees
Refugees are divided into two broad groups. A refugee claimant can apply either as a Convention refugee or as a person in need of protection. A Convention refugee is a person who has a well-founded fear of persecution based on race, religion, political opinion, nationality or membership within a particular social group. Social group can include communities based on sexual orientation, victims of domestic violence or transgendered people. A person in need of protection is a person who has a well-founded fear of torture or unusually cruel treatment or risk to life in his or her country of origin. These fears do not have to be related to any specific groups as listed above. However, you cannot apply as a refugee due to risk of life in your country of origin solely because your home country cannot
People with HIV have tremendous fear and concerns about possible exclusion because HIV testing is a mandatory part of all newcomer applications.
provide adequate medical care.
Non-status people
This term is often used to describe many different kinds of people who do not have valid or full legal status in Canada. These are people who might otherwise be referred to as illegal immigrants. However, the term non-status peoples is often preferred to illegal immigrants since the term illegal adds stigma and implies criminality, when, in fact, most of these people have actually had some form of status in Canada at some point. Non-status people can include: people who came to Canada with a legal visa that has since expired; people who applied for immigrant or refugee status, but were rejected and have not left the country; people who came as visitors and decided to stay without extending their visa or applying for formal status; people whose immigration or refugee applications are in limbo for a variety of administrative reasons. Whether non-status people can access any public services or assistance will depend on the specific situation they are in.
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Immigration and HIV testing

Citizenship and Immigration Canada requires a medical exam for all immigrants and refugees. Since January 2002, HIV testing has been a mandatory part of the immigration examination for everyone over the age of 15. You will also be tested for HIV if you are under 15 but have an HIV-positive parent, have received blood or blood products or are going to be adopted in Canada. On most applications for status in Canada, you will be asked if you have any serious illnesses. If you say no, and Citizenship and Immigration Canada later finds out that this was not true, you could be removed from Canada.
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HIV is not considered to be a danger to public health and safety. Therefore, having HIV does not, in itself, make you inadmissible to Canada.
Grounds for refusal: Who will be rejected?

People who are considered inadmissible will not be allowed to come into or stay in Canada. People will be considered inadmissible if they are a danger to public health or safety, such as people with a criminal record or with certain contagious diseases, such as tuberculosis. HIV is not considered to be a danger to public health and safety. Therefore, having HIV does not, in itself, make you inadmissible to Canada. However, people are also considered medically inadmissible if they are expected to place an excessive demand on health and/or social services compared to the average Canadian. Many people with HIV may be considered individuals of excessive demand, due to the high cost of anti-HIV drugs. Costs are estimated over a 10-year projected period, which increases the likelihood that someone with HIV will start on anti-HIV drugs and incur the associated costs during that time period.
Exemptions from medical inadmissibility

Some applicants are exempted from the excessive demand criteria. These include: eligible refugee claimants and persons in need of protection; sponsored immigrant applicants who are the spouse, common-law or conjugal partners of a Canadian resident; dependent children (under 22 years of age and single) of a Canadian resident.
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The excessive demand rule will not apply to people in these categories. In other words, they are not considered medically inadmissible and may still be eligible for admission to Canada regardless of the costs they might place on the health and social system. A spouse can be of the same or oposite sex. Partners can be of the same or the opposite sex, and include common-law partners who have lived together in a relationship for more than a year, and conjugal partners who have been in a relationship for more than a year, but who live in different countries.
Visitors, students and people on work visas

A medical exam, including an HIV test, is needed in order to obtain a visa for people who: apply to come to Canada to work or study or as a visitor and who plan
If you have filed a refugee claim and received an acknowledgement of the claim from Citizenship and Immigration Canada, you can get medical care through the Interim Federal Health program.
to stay in Canada for more than six months; and/or have spent more than six months of the preceding year in a designated country (a country that has a higher incidence of serious communicable diseases than Canada). Citizenship and Immigration Canada (CIC) keeps a list of designated countries on its Web site at: www.cic.gc.ca/english/information/medical/dcl.asp Visitors or people applying for study or work visas who test HIV-positive may be rejected on the ground of medical inadmissibility. Visitors who intend to stay for less than six months, or who are coming from a country not on the designated country list, will probably not need to have a medical examination.
Services available to immigrants, refugees and non-status people with HIV

Access to medical care
Access to medical care depends on your status in Canada. For refugee applicants, if you have filed a refugee claim and received an acknowledgement of
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the claim from Citizenship and Immigration Canada, you can get medical care through the Interim Federal Health program. The Interim Federal Health program is paid for by the federal government and will cover emergency and essential health services, including birth control, prenatal and obstetrical care, medications and emergency dental services. It will also cover the cost of the immigration medical examination. The Interim Federal Health program is only available to people applying for refugee status as a Convention refugee or as a person in need of protection. It is not available to people applying as an immigrant. It is also not available to a visitor, student or people on work visas. The Interim Federal Health coverage usually has an expiry date and you will need to apply for renewal before it expires. You will be eligible to reapply for coverage under Interim Federal Health for as long as your refugee claim is still in progress. This includes the stages of judicial appeal after a failed claim. See Chapter 20, Money matters, for more information on the Interim Federal Health program. If your refugee claim is successful, you will then be eligible to apply for healthcare coverage under your provincial health insurance plan. The provincial health insurance plan should cover the costs of all health services, including medical tests, but not necessarily the cost of all drugs. In some provinces, there may be a three-month waiting period before new applicants can get coverage through the provincial health plan (see Chapter 19, Access to treatment). If you are applying as an immigrant, student or visitor, you will not be eligible for either the Interim Federal Health program or provincial healthcare coverage. You will need to pay for health services and drugs either through private insurance or out of your own pocket. Some categories of workers who are admitted to Canada on work permits may be eligible for provincial health coverage. In some provinces, government-funded community health centres or health service organizations will provide free medical services to people without healthcare coverage. However, these agencies often have very limited resources and very specific criteria as to who can use these services. Your local AIDS service organization may be able to direct you to health services in your area if you are not eligible for government health insurance coverage.
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If you are applying as an immigrant, student or visitor, you will not be eligible for either the Interim Federal Health program or provincial healthcare coverage. You will need to pay for health services and drugs either through private insurance or out of your own pocket.
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Access to anti-HIV drugs

Access to anti-HIV drugs will depend on your status in Canada. For refugee applicants, the Interim Federal Health program (see page 243) will cover all needed anti-HIV drugs. If you are applying as an independent or sponsored immigrant, student, worker or visitor, you will not be eligible for coverage for anti-HIV drugs and will need to get drugs through private insurance, or pay for them out of your pocket.
If you are getting government social assistance or disability benefits, your drugs will be covered.
If you are getting government social assistance or disability benefits, your drugs will be covered. These benefits may be available to applicants who have a temporary resident permit, or who apply for status on humanitarian and compassionate basis.
A model for people who have problems getting anti-HIV drugs

In Ontario, various HIV service providers have formed a coalition called the Committee for Accessible AIDS Treatment. This group has developed a streamlined compassionate treatment access program to assist people with HIV who have problems getting anti-HIV drugs. This program assists doctors and people with HIV with all the needed paperwork to get compassionate access to anti-HIV drugs. It also links people with HIV to proper legal and social support to help them get long-term healthcare and drug coverage. For more information, contact the Committee for Accessible AIDS Treatment at: www.hivimmigration.ca.
Sometimes, when your immigration status changes, your ability to get access to anti-HIV drugs will be disrupted. This disruption can happen for a variety of reasons during your immigration or refugee application process. This could happen, for example, in the period when you are waiting for your refugee claim to be acknowledged but before the Interim Federal Health program
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coverage starts, or after you have become a landed immigrant but while you are waiting for the province to provide coverage. Since disruption of anti-HIV drugs can cause drug resistance and treatment failure, please talk to your healthcare providers and counsellors to try to get a continuing supply of your drugs before you start treatment. Try to plan ahead if you know that your status or coverage for drugs may be changing. Your healthcare providers and local AIDS service organizations may know of ways to get a short-term supply of drugs to help you get through those transition periods.
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Compassionate access to anti-HIV drugs

Many pharmaceutical (drug) companies will consider providing a short-term, free supply of drugs on compassionate grounds to people who need them. This usually requires a formal letter of request from your doctor. Typically, the letter must explain why you need short-term free drugs, and an assurance that you will have some form of long-term coverage within a reasonable amount of time (usually less than six months to one year). The drug company will likely only supply the drugs one month at a time and your doctor will need to renew the request monthly. For more information about compassionate access, see Chapter 19, Access to treatment.
Try to get a continuing supply of your drugs before you start treatment. Your healthcare providers and local AIDS service organizations may know of ways to get a shortterm supply of drugs to help you get through those transition periods.
Legal support
Proper legal support is one of the most important factors affecting the outcome of your immigration application. A good lawyer should spend the time to explain your options, provide you with information to help you decide which option to apply for, help you with documents, interviews and hearings, and review your options if you encounter difficulties or rejection during the application process. Your immigration lawyer should give you an estimate of his or her fees, a clear explanation of what services the fees cover, and let you know if he or she would accept payment through legal aid. As a person with HIV, it is important, if possible, to find an immigration lawyer with special knowledge and experience with HIV-related immigration policies. You will also need a lawyer you can feel comfortable with and trust in
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order to disclose your full situation, including HIV status. To help yourself find a good, HIV-knowledgeable immigration lawyer, you can try contacting your local AIDS service organization (or, in Ontario, special HIV legal clinics), for references. It is also helpful to ask other people with HIV, especially those from your own ethno-racial background or your country of origin. Try to find out the experiences they have had with specific immigration lawyers in dealing with their cases. There are different ways of getting legal services if you cannot pay for them. You can apply for legal aid through provincial legal aid agencies, or you
Proper legal support is one of the most important factors affecting the outcome of your immigration application.
can try to access legal help through community-based legal clinics. You can apply for legal aid even if you do not have any status in Canada. Legal aid may provide you with financial assistance to pay for the service of a lawyer, but you will need to go to a legal aid office and make an application in writing. They will ask you a lot of questions, so call first to find out what you need to take. Legal aid will assess your financial situation and the nature of your legal matter in order to decide whether they will give you a legal aid certificate. If you are given a legal aid certificate, you will be able to hire a lawyer who will bill legal aid for the services. If you are worried about being personally identified by applying to legal aid,
As a person with HIV, it is important, if possible, to find an immigration lawyer with special knowledge and experience with HIV-related immigration policies.
you can try calling some of the community legal clinics first and get some advice over the phone.
Alan Li would like to thank: Michael Battista, Avvy Go, Maureen Owino, Geraldine Sadoway, Derek Thaczuk and Josephine Wong for assisting with resource information, feedback and editing.
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Resources
Uprooted Lives Positive Side article on immigrants and refugees living with HIV in Canadaincludes resource list. (www.positiveside.ca/e/V8I1/Uprooted_e.htm) Treat HIV Globally Multilingual treatment information (www.treathivglobally.ca) Citizen and Immigration Canada Information about refugee assistance programs (www.cic.gc.ca) (For a list of designated countries for immigration medical examinations see www.cic.gc.ca/english/information/medical/dcl.asp) The Canadian HIV/AIDS Legal Network Legal information related to HIV and immigration (www.aidslaw.ca) Committee for Accessible AIDS Treatment access related to immigrant, refugee and non-status people with HIV (www.hivimmigration.ca)
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CONTENTS
HIV and aging

Its very good news that people with HIV are paying attention to issues around aging. It means we are surviving and getting older like the rest of the population! Sometimes its hard to tell whether a symptom is due to HIV or aging. We need to take good care of ourselves, be proactive and pay attention to changes in our bodies as we age. This information is just for you, but also see other chapters of Managing your health that apply to all people with HIV. About the author
Kath Webster, a native of Vancouver, B.C., has been living with HIV for more than 20 years. She is a volunteer with the Treatment Information Program at the B.C. Persons with AIDS Society and is on the board of directors for the Positive Womens Network.
The challenge of HIV in an aging population Is it HIV or is it age? Screening tests Coping with loss Financial issues
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The challenge of HIV in an aging population

Thanks to advances in treatment, people with HIV are living much longer than ever before. It is estimated that up to 12 per cent of people with HIV in Canada are older than 50 years of age; this number is expected to increase by as much as 20 per cent over the next decade.
It is estimated that up to 12 per cent of HIVpositive people in Canada are older than 50 years of age; this number is expected to increase by as much as 20 per cent over the next decade. Unfortunately, the number of people older than 50 who are newly diagnosed with HIV is also growing.
Unfortunately, the number of people older than 50 who are newly diagnosed with HIV is also growing. In many cases, the person has been living with HIV for some time without knowing it, giving the disease a chance to advance significantly and making it more challenging to find effective treatment. This trend towards a late diagnosis in older people signals the need for better understanding of sexual activity and injection drug use in the over-50 population and the need for better prevention education for this age group. Clearly, early diagnosis of HIV infection is important no matter what your age. Early diagnosis becomes even more critical the older you are, however, as HIV progresses more quickly with age. The good news is that anti-HIV drugs appear to work just as well whether you are 52 years old or 25. And studies show that age and better control of HIV seem to go hand in hand. Those who are HIV-positive later in life tend to achieve and maintain an undetectable viral load more often than do younger people with HIV, possibly because they are better at following treatment instructions. An undetectable viral load means that the number of viral particles in the blood is lower than can be detected by tests. Overall, the issues associated with treatment of HIV become more complex with age. This is because the chances of having other diseases that also require treatment, including high blood pressure, arthritis or even cancer, also increase with age. Taking several different drugs at the same time can raise
Anti-HIV drugs appear to work just as well whether you are 52 years old or 25.
your risk of drug interactions, side effects and toxicities. And while careful monitoring of all drugs is essential, this is especially true when you are 50 or older. The side effects of anti-HIV drugs, discussed in Chapter 11, Side effects and symptoms, dont appear to occur more often in people with HIV as they get older, but they can be made worse by the side effects of other non-HIV
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drugs. Decreases in kidney and liver function that come naturally with age also increase the potential for higher drug toxicity, as can changes in hormone levels and metabolism, as well as weight loss associated with aging.
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Is it HIV or is it age?
Many of the health changes that occur with aging can be similar to the symptoms of HIV as well as to the side effects of HIV treatment. Lets take a look at some of the health conditions associated with both age and HIV.
Overall immune system decline

As you age, your immune system becomes less effective at protecting your body from infection and disease. This is why HIV progresses more quickly in people who are older and why early diagnosis of HIV is so important.
Cardiovascular (heart) disease

Cardiovascular disease is a broad term that includes coronary heart disease, heart attack and stroke. It is often referred to as heart disease. As you age, the risk of developing heart disease increases, whether you are HIV-positive or not. Women older than 55 and men older than 45 are at higher risk of developing heart disease. If you have other members in your family who have heart disease a father, a mother, an uncle or a sibling, for instanceyour risk of developing heart disease will be higher than the person who doesnt have a family history. While you cant control risk factors for heart disease such as your age and family history, there are many lifestyle risk factors you can control. These include: smoking; being overweight; lack of exercise; poor diet; excessive alcohol intake; high blood cholesterol and blood lipids or fats; diabetes; high blood pressure or hypertension.
As you age, your immune system becomes less effective at protecting your body from infection and disease.
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The relationship between HIV and heart problems is not fully understood but is being studied. However, some studies show that anti-HIV drugs such as some protease inhibitors can increase the risk of heart problems by raising the level of cholesterol and triglycerides in the blood (see Chapter 11, Side effects and symptoms). Other research suggests that HIV itself causes heart problems. In either case, it is clear that the benefits of anti-HIV treatment far outweigh the risks of heart disease.
Some studies show that anti-HIV drugs such as some protease inhibitors can increase the risk of heart problems by raising the level of cholesterol and triglycerides in the blood.
Healthy heart habits

Lower your risk for heart problems by adopting the following lifestyle changes: eat a healthy diet; exercise regularlyespecially aerobic or cardio exercise; quit or cut down on smoking; drink alcohol in moderation; avoid cocaine, crack cocaine, crystal meth, ecstasy, ketamine and GHB; talk to your doctor about supplements such as anti-oxidants and B vitamins. For more information on healthy lifestyle changes, see Chapter 4, Healthy living.
Early menopause
For most women, menopause occurs between the ages of 45 and 55. During
Menopause appears to occur earlier in some women with HIV.
this time, the production of female hormones (estrogen and progesterone) declines, eventually causing menstruation (periods) to stop completely. Although the impact of menopause on women with HIV has not been well studied, menopause does appear to occur earlier in some women with HIV. Just why is not clear, but there are many possible factors in addition to treatment. They include: a low red blood cell count or anemia; decreased production of the hormones estrogen and progesterone; weight loss;
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reduced CD4+ cell count; use of street drugs, such as heroin and methadone. Menopause brings with it an increased risk of some health problems, including: cancer of the breast, lung or ovaries; emphysema and other lung diseases; osteoporosis; cardiovascular (heart) disease. Many of the symptoms of menopause and HIV overlap. This can result in a missed or late diagnosis of HIV or difficulty determining the cause of symptoms. They include: hot flashes; night sweats; skin and hair changes; trouble sleeping; forgetfullnes; fatigue; emotional changes/depression. Talk to your doctor if you have a family history or concerns about any of these health conditions or menopause symptoms (see Chapter 15, HIV and women).
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Research suggests that

Bone disorders
Your bones are living and growing. The strength of your bones, or bone density, is determined by the amount of calcium, phosphorous and other minerals they contain. When you have HIV, your risk of some bone disorders increases, whether or not you are on treatment. Research suggests that up to one-third of people with HIV may have early-stage bone loss or osteopenia. Age is also a risk factor for bone problems, as is gender. Women, for instance, have a higher risk than men of osteoporosis, a bone disease that causes bones to become thin and fragile and to break easily, particularly at the hip, spine and wrist. This is partly because women have 30 per cent less bone mass than men. But women are also particularly vulnerable to osteoporosis after menopause, when the hormone estrogena key factor in maintaining
up to one-third of people with HIV may have early-stage bone loss or osteopenia.
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bone strength in womenis no longer produced by the ovaries. On the other hand, HIV appears to cause more bone loss in men than in women, cancelling out or even reversing the advantage that men usually have. Other risk factors for both men and women include a family history of osteoporosis, smoking and a sedentary lifestyle. See Chapter 11, Side effects and symptoms, for more information on bone disorders.
Keeping bones strong

Since the exact cause of bone disorders in people with HIV is not known, preventing bone loss is the best strategy. Heres how: eat a healthy diet; increase daily intake of calcium and vitamin D3; get lots of weight-bearing exercise, such as walking, running, hiking or weight training; limit or eliminate your intake of caffeine, cigarettes and alcohol.
Cancer
Before HAART was introduced in the mid-1990s, the most common cancers in people with HIV were the HIV-related cancers, including Kaposis sarcoma, non-Hodgkins lymphoma and cervical cancer (see Chapter 12, HIV-related
The chances of developing both HIV-related and non-HIV-related cancers increases as you age.
infections and cancers). Now, thanks to more effective HIV treatment, these cancers are less likely to occur when you have HIV. On the other hand, the chances of developing both HIV-related and nonHIV-related cancers increases as you age. Both men and women older than 50 are at an increased risk of developing colon and/or rectal (colorectal) cancer, for instance. In fact, some research indicates that age-related cancers are more common than HIV-related cancers among persons on HIV treatment. Other non-HIV-related cancers seen in people with HIV 50 years of age and older include: skin cancer; lung cancer; prostate cancer;
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anal cancer; liver cancer (mostly in those who are co-infected with hepatitis C).
Diabetes
Insulin is a hormone produced by the pancreas to control the amount of sugar or glucose in the blood. Diabetes occurs when your pancreas cannot make enough insulin. There appears to be a link between treatment with anti-HIV drugs and a rise in blood sugar levels leading to diabetes (see Chapter 11, Side effects and symptoms). There are numerous lifestyle measures that can help you keep your blood sugar levels within the range of normal. Limit the amount of sugar and starchy foods in your diet, such as desserts, soft drinks, white rice or potatoes. Choose whole grains and unprocessed foods that contain fibre, such as barley, brown rice and oats as healthy grain choices. Eat smaller amounts. Eat a balanced diet, including healthy protein sources such as lean meats and at least two servings of fish per week. Exercise as often as possible, ideally every day (see Chapter 4, Healthy living).
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There appears to be a link between treatment with anti-HIV drugs and a rise in blood sugar levels leading to diabetes.
Are you at risk of diabetes?

Risk factors for diabetes include: older than 45; being overweight; a sedentary (little or no exercise) lifestyle; a family history of diabetes; Aboriginal, African, Latin American or Asian ethnic ancestry; high blood pressure (hypertension); high levels of cholesterol and/or triglycerides in the blood; co-infection with hepatitis C; taking anti-HIV drugs.
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Mental health
Dementia is a brain disorder that can affect your memory and ability to think clearly. It can have a serious impact on your daily activities, quality of life and even your ability to live independently. Fortunately, the rate of HIV-associated dementia has greatly declined since more effective anti-HIV drugs became available in the mid-1990s. Nevertheless, as you age, you may be at increased risk of developing dementia not associated with HIV (non-HIV-associated dementia). Its important to speak to your doctor as soon as possible if you
The rate of HIV-associated dementia has greatly declined since more effective anti-HIV drugs became available in the mid-1990s.
become aware of early signs of dementia, such as difficulty remembering, concentrating or completing basic tasks. Depression is quite common in people with HIV of all ages. If you are experiencing symptoms of depression, such as fatigue, sleep problems or feeling hopeless, talk to your doctor. Some of these health problems can be caused by HIV and treatment as well as other conditions that can occur as you age. Depression can also be a side effect of some anti-HIV drugs as well as other medications, such as those used to treat hepatitis C. Its very important to see your doctor and get treatment and support. For more information on your emotional and mental health (see Chapter 6, Your emotional health).
Depression is quite common in people with HIV of all ages.
Possible physical causes of depression

anemia; low testosterone; low level of vitamin B12; low thyroid hormone levels (especially in women); hormonal changes for women due to pre-menstrual syndrome (PMS), pregnancy or menopause.
Sexual health
It is possible to have a healthy and satisfying sexual life when you are HIV-positive and when you are aging. In fact, sexual health is essential to your well-being. Sexual problems and low libido (sex drive) can occur in men and women
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especially as we get older. Its a sensitive issue that often gets swept under the rug and not addressed. Some possible causes are: HIV itself; drug side effects; hormone imbalances (including low testosterone in women); cardiovascular (heart) disease; diabetes; stress and depression. Its important to talk to your doctor about sexual problems since, in many cases, they can be treated and you can have a satisfying and happy sex life. For more information on how to keep your sex life happy and healthy (see Chapter 7, Your sexual health).
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It is possible to have a healthy and satisfying sexual life when you are HIV-positive and when you are aging.
Screening tests
For a list of recommended screening tests for people with HIV, see Chapter 9, Monitoring your health. While HIV is monitored using routine tests, additional tests may be required to monitor your health status as you get older. These tests include: Bone density scan A scan of your lower spine and hip measures your bone density and is recommended every two years. Fasting blood glucose test A blood test for diabetes is recommended every three to six months. Lipid profile test These blood tests check total cholesterol, LDL (bad fats), HDL (good fats) and triglycerides. They are recommended one to two times a year, depending on your risk factors for heart disease. Kidney function test Kidney function declines with age, and certain anti-HIV drugs are processed through the kidneys. For both these reasons, a blood and/or urine test is recommended periodically. Speak to your doctor. Blood-pressure monitoring A blood-pressure monitor measures the force of blood against the walls of the arteries and indicates your risk of developing heart disease.
Additional tests may be required to monitor your health status as you get older.
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Colorectal cancer screening A few tests can detect cancer of the colon or rectum. Tests can include a digital rectal exam, stool test or a scope inserted into the rectum. Your doctor will advise you on how often you should be screened.
For women only

Pap test A Pap test collects cells from the cervix for examination under a microscope. It is used to detect changes that indicate the presence of cancer or changes that may lead to cancer. It is recommended that sexually active women with HIV have Pap tests every six months to a year. Breast exam In order to detect possible early signs of breast cancer, your doctor will check for lumps or other abnormalities in your breasts, nipples and armpits. A breast exam is recommended once a year, usually combined with your Pap test. Mammogram A mammogram uses a low-dose X-ray to examine each breast. It is used to look for different types of tumours and cysts. It is
Many people with HIV are now living long enough to experience middle age and beyond.
recommended once a year for women over 40. Pelvic exam A pelvic exam is a physical examination of the internal and external pelvic organs. It is usually combined with a Pap test every six months to a year.
For men only

Prostate exam A manual digital exam of the rectum is recommended yearly for men over 40. Your doctor may also order a PSA blood test, which screens for prostate cancer.
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Coping with loss

It is wonderful and even miraculous that many people with HIV are now living long enough to experience middle age and beyond. Living with a chronic illness such as HIV can be difficult at the best of times, however, and this can affect your quality of life. Losses you may have experienced as a result of being HIV-positive, such as the loss of health, employment, income, youthful good lookseven the loss of friends who have died because of AIDScan be devastating. Here are some ways to combat isolation and improve your overall quality of life: get involved in your community; create a strong social and support network; exercise your mind and keep mentally active; manage stress and depression; eat a healthy diet; sleep well; get outdoors and exercise physically; cultivate a positive outlook; quit smoking; avoid excessive alcohol; have a spiritual practice; have a healthy sexual relationship.
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Financial Issues
When you reach 65, you may find yourself with a reduced income. Government disability or private insurance benefits may cease and you may need to live on an even stricter budget. This can cause much stress and anxiety. Its important to seek support from your local AIDS organization or other appropriate supports. For more information on financial issues related to living with HIV, see Chapter 20, Money matters.
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Resources
The Positive Side Health and wellness magazine contains articles about aging, such as: Growing old gracefully Look in the e-zine index (www.positiveside.ca) Canadas Physical Activity Guide to Healthy Active Living (www.phac-aspc.gc.ca/pau-uap/fitness/downloads.html) HIV Wisdom for Older Women Website dedicated to the prevention of HIV in older women and to life enrichment for those who are living with HIV (www.hivwisdom.org)
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Access to treatment
Fortunately for people with HIV in Canada today, there are a number of effective anti-HIV drugs available. Sometimes access to these treatments is as easy as seeing your doctor, getting a prescription and having it filled at your local drugstore. But sometimes it is not. This chapter will help you navigate the systems and processes that make prescription drugs and other treatments available to Canadians. About the author
Louise Binder is a Canadian HIV-positive lawyer who was diagnosed in 1993. In 1997, she helped to found the Canadian Treatment Action Council, which does systemic advocacy for access to treatments. She is also a member of the Community Advisory Committee of the Canadian HIV Trials Network and many other HIV organizations. Louise has been involved in many of the important advocacy struggles of this community, including the battles to save, and then increase, Canadian federal funding for HIV/AIDS; to get timely access to safe and effective drugs at the federal and provincial government levels; and to ensure earlier access to drugs in development by the pharmaceutical industry.
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CONTENTS
How drugs are approved for sale in Canada How to access approved prescription drugs How to access unapproved drugs How to access non-prescription medications and other kinds of treatment
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good quality.
How drugs are approved for sale in Canada

All drugs in Canada, whether prescribed by a healthcare provider or bought over the counter, must first be approved for sale by the federal government. The federal health ministry, known as Health Canada, is responsible for ensuring all drugs sold are safe, effective and of good quality. Health Canada also ensures all biologics (drugs and vaccines derived from living sources, such as interferon for hepatitis C), natural health products (such as vitamins,
Health Canada, is responsible for ensuring all drugs sold are safe, effective and of
supplements and herbal therapies), cosmetics and medical devices are safe and effective. Before being approved for sale, prescription drugs must undergo thorough clinical trials in Canada and/or abroad to ensure they work (that is, they are effective), and are safe and to find out if they interact with other drugs. These trials are reviewed by Health Canada as part of its decision-making process. It is very important to recognize that clinical trials do not mean that a specific drug or other treatment will be safe for everyone all the time. Clinical trials test a drug over a limited time and usually in limited populations, so it is only possible to get a better picture of how safe and effective a drug is when it has been in
Before being approved for sale, prescription drugs must undergo thorough clinical trials in Canada to ensure they work, are safe, and to find out if they interact with other drugs.
use for a longer time in the general population.
How to access approved prescription drugs

A prescription drug can only be obtained by a prescription from a doctor or other licensed healthcare provider. Prescription drugs can only be bought through a licensed pharmacist in a drugstore or in a hospital. Internet pharmacies also sell some drugs, but you need to be careful to ensure that the Internet pharmacy is legal. Not all of them are. If you are uncertain, check with your provincial pharmacists association, doctor, healthcare provider or local AIDS service organization.
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Anti-HIV drugs are expensive and the issue, as with all drugs, is who will pay for them. Some Canadian people with HIV have private insurance plans that pay for all or part of their prescription drugs. A few people may be able to pay cash for their drugs, but most people cannot afford to do so. As a result, all provinces and territories have created public drug coverage plans to assist with the payment of certain drugs and treatments.
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Provincial and territorial drug coverage programs

Each province and territory in Canada has a different program for subsidizing drug costs for their residents. These programs have different criteria for deciding who is eligible for coverage, how much the province or territory will pay and what drugs are covered. The programs may be complicated to understand without the help of your local AIDS service organization. Generally, the publicly funded provincial and territorial drug programs offer coverage for people on social assistance (welfare) and for seniors over the age of 65. Some provinces issue cards to show to your pharmacist that prove you are entitled to this type of coverage. Some provinces and territories offer assistance to cover costs for other citizens who have high drug costs but little or no private insurance. This is often referred to as a catastrophic drug program. The availability of such programs varies among provinces and territories, so check with your local health authority or your local AIDS service organization to learn about whether you are eligible for coverage. Each province and territory has found different ways to contain the cost of drugs. There are a number of ways to do this: limit the list of drugs that the province or territory will pay for; require the consumer to pay a deductible (usually income based) as part of public catastrophic drug coverage; pay for only the cheapest drug in a class of drugs and require the person wanting a more expensive drug of the same class to pay for all or some of it. For people who meet the criteria for partial or full coverage, the provincial and territorial governments each create a list of drugs and treatments they are willing to subsidize (often called a drug formulary). Generally, governments make
Each province and territory in Canada has a different program for subsidizing drug costs for their residents.
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the decisions on which drugs to include in the formulary with the help of information provided by independent medical and economics advisors. Recently, in order to try to get more consistent coverage for people across the country and to save time in decision making, nine of the 10 provinces (Quebec does not participate) and the federal government agreed to set up a common drug review process. This process is managed by the federal government but paid for jointly by the provinces and federal government. This process makes recommendations to the provinces and territories about what to cover. These decisions about what to recommend are based on the advice of an expert drug advisory committee; committee members weigh whether it is cost effective for the government to pay for the residents of a province or territory to receive a particular drug. The provincial, territorial and federal governments do not, however, have
Each province or territory makes its own decision about which drugs and other treatments it will cover.
to accept the recommendation of the expert drug advisory committee and sometimes do not. The creation of the common drug review has not yet achieved consistent access across the country. Each province or territory makes its own decision about which drugs and other treatments it will cover. The decision is based mainly on economic factors, including its drug budget, population base, number of eligible residents with each disease or condition, as well as the cost of treatments and choice of treatments available. Thus, we have a patchwork quilt of public drug coverage across the country. You need to check the coverage in your province or territory and any conditions for coverage. You can contact CATIE for more information on drug coverage plans across Canada.
Some people are covered under plans set up by the federal government.
Federal government drug coverage programs

Some people are covered under plans set up by the federal government. These people include refugees, members of the military, federal government employees and retirees, federal prisoners and designated Aboriginal people who are living on reserves. Because of the legal relationship between Aboriginal people and the federal government, access to treatments for First Nations, Mtis and Inuit peoples
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may involve a different process than described above, particularly for Aboriginal people living on reserves. The Non-Insured Health Benefits Program is a national health program administered specifically for eligible members of the First Nations and Inuit. It is a supplemental program designed to meet medical, vision and dental needs not covered by provincial or territorial insurance plans or private insurance companies For more information, see Chapter 20, Money matters. Prisoners in federal and provincial prisons should receive the same standard of care for HIV treatment as everyone else. In practice, however, it is common for problems to occur in ensuring an uninterrupted supply of anti-HIV drugs to people with HIV in the prison system. There are many causes for this. Prisons may run out of HIV drugs; prisoners may be transferred from one institution where drugs are available to another where they are not; and discharge planning for prisoners being released is often not well organized. The Prisoners AIDS Support Action Network assists prisoners with HIV treatment access issues. Specific rules regarding access to treatments for immigrants, refugees and undocumented people are set out by the federal government. If you have filed a refugee claim and received an acknowledgement of the claim from Citizenship and Immigration Canada, you can get medical care through the Interim Federal Health program. For more information, see Chapter 17, Immigrants, refugees and non-status people with HIV, and Chapter 20, Money matters.
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Some people have a private drug plan, which may be either a group or individual plan.
Private healthcare insurance coverage

Some people have a private drug plan, which may be either a group or individual plan. Each plan decides what drugs and treatments to cover, often guided by the list of treatments covered by the provincial or federal drug formulary. Check the contents of your plan to be sure. If you have an employer plan, the human resources person where you work can provide this information. You are entitled to it. You can also obtain it from the insurance company providing the coverage. Generally, only prescription drugs are covered, but some plans cover some over-the-counter medications if you have a prescription from your doctor. However, this means you must obtain the drug from a pharmacist and pay a dispensing fee. Private plans may also cover additional health-related costs, such as dental work, massage and chiropractic services. If you have short- and/or long-term
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sickness and disability coverage, medical coverage may also continue in whole or part during the time of your absence from work. Check your plan to see if it covers such costs.
Hospitals and clinics

You do not have to pay for drugs given to you while in hospital. However, the hospital may use generic drugs and if you want the brand name drug, you may have to pay for it out of pocket. There are some clinics where some treatments may be obtained at no cost.
You do not have to pay for drugs given to you while in hospital.
Your local AIDS service organization can generally help you find these clinics.
Ensuring continuous coverage when you move

If you are moving from one province or territory to another, or from federal to provincial/ territorial coverage, you need to check the rules for coverage in the new location as these may be quite different. The drugs you use may not be covered or there may be different financial arrangements for coverage. Some provinces will only pay for drugs if a healthcare provider in that province has writ-
If you are moving from one province or territory to another, it is a good idea to make sure you have enough drugs for at least three months to ensure you do not run out before you are able to access the services in the new area.
ten a prescription. There may be other restrictions you will need to be aware of. It may take several months to meet the residency requirements for coverage in your new location. If you are moving from one province or territory to another, it is a good idea to make sure you have enough drugs for at least three months to ensure you do not run out before you are able to access the services in the new area. Check to see whether your former location will provide any coverage after your move until you are covered in the new area.
If you have no drug coverage

If you are not covered by a drug plan, you can pay for drugs yourself, but few people can afford this. If you have no health coverage, check with your local AIDS service organization and healthcare provider to determine what options are available for you to enable you to access treatment.
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How to access unapproved drugs

Unapproved drugs are those which have not been reviewed and approved by Health Canada for sale. Depending on the circumstances, it may be possible to obtain access to these drugs on a temporary or permanent basis.
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in Canada.
The federal governments Special Access Program

Health Canadas Special Access Program provides access to drugs and medical devices not available for sale in Canada. Your doctor must apply to the Special Access Program on your behalf and the drug company must agree to provide the drug to you. The Special Access Program must also agree to supply it to you. The drug company can agree to provide it for free or to charge you for the drug. If you are required to pay, neither the provincial, territorial, federal, nor private health plans will generally reimburse you for the drug. You should check with your drug coverage plan to see if they will reimburse you. If you need a drug that has not been approved for sale here but is available elsewhere, speak to your doctor.
Health Canadas Special Access Program provides access to drugs and medical devices not available for sale
Clinical trial participation

Pharmaceutical (drug) companies often have clinical trials of their drugs that give eligible participants access to drugs that are not yet approved or widely available. Clinical trials test the drug in humans for safety, effectiveness, quality and other aspects. Clinical trials have eligibility criteria and usually restrict the number of people who can participate. If you are interested in taking part in a clinical trial, you should discuss this possibility with your doctor. If you do join a clinical trial, be sure to understand and sign the informed consent form before entering the trial. This form outlines the conditions of the trial and, in particular, the risks to you of participation. Also be sure to discuss how, if the drug works for you, you can continue to have access to it after the trial has finished until you are able to get it through your drug plan. If there is agreement by the drug company to continue to provide the drug after the trial ends, a statement to this effect must be in the informed consent that you sign. Many drug companies now provide an expanded access arm to their clinical trials. An expanded access arm is a group of people who are part of the trial
Pharmaceutical (drug) companies often have clinical trials of their drugs that give eligible participants access to drugs that are not yet approved or widely available.
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but for whom the eligibility criteria for the trial do not apply. Usually, eligibility for the expanded access arm is based on the recommendation of your doctor. Read the informed consent form for this arm of the trial carefully to ensure that you understand the conditions for continued eligibility. Ensure that if you benefit from the treatment you will be able to obtain it after the expanded access arm of the trial ends until you are able to get it through your drug plan.
Compassionate access
Compassionate access generally refers to a situation where an experimental
Compassionate access generally refers to a situation where an experimental drug is provided to someone who is very ill and the experimental drug is a last chance to try to improve the persons health.
drug is provided to someone who is very ill and the experimental drug is a last chance to try to improve the persons health. While drug companies generally do not have formal compassionate access programs, they may be willing to provide a drug to a doctor who has a patient in this situation. Should you be in this situation, discuss compassionate access with your doctor.
How to access non-prescription medications and other kinds of treatment

Non-prescription treatmentsincluding non-prescription medications (also called over-the-counter drugs), complementary and alternative therapies, and vitamins and supplementsare not usually covered by provincial, territorial or federal plans, except in the most unusual of situations. See Chapter 5, Complementary and alternative therapies, for more information on available treatments. However, some provinces and territories may cover some non-prescription treatments specifically for people with HIV. Check with your local AIDS service organization to see if you can access this coverage. Some private drug plans will provide limited coverage for non-prescription treatments if they are prescribed by a licensed healthcare provider and dispensed by a pharmacist. In that case a dispensing fee must be paid, increasing the cost of the drug or treatment.
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Some tax relief may be available for the purchase of non-prescription treatments, so keep your receipts and check with an accountant or other tax expert. Some AIDS service organizations have tax clinics where you can get help with this (see Chapter 20, Money matters). Some AIDS service organizations provide limited funds to cover purchases of over-the-counter drugs or vitamins and supplements. Check with your local AIDS service organization to see if such funds exist.
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Resources
Federal, Provincial and Territorial Drug Access Programs Information about drug benefit programs across Canada Canadian Treatment Action Council (CTAC) National non-governmental organization with a mandate to support access to treatment issues (www.ctac.ca) Health Canadas Special Access Program (www.hc-sc.gc.ca/dhp-mps/acces/drugs-drogues/index-eng.php) Clinical Trials: What You Need to Know Plain language information about clinical trials, including their aims, procedures, risks and benefits from the Canadian HIV Clinical Trials Network. This website also includes a listing of clinical trials currently enrolling in Canada. (www.hivnet.ubc.ca) Prisoners AIDS Support Network (PASAN) Assists prisoners with HIV treatment access issues (www.pasan.org) PASAN accepts collect calls from prisoners across Canada at 1-416-920-9567
Some tax relief may be available for the purchase of non-prescription treatments so keep your receipts and check with an accountant or other tax expert.
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Money matters
In this chapter you will find out about the various financial assistance programs that may be available to you if you decide to leave work or work part time as a result of an HIV-related illness. Deciding whether or not to continue working, change jobs or work less is one of the biggest decisions you can make. Drug coverage and a secure income are crucial to your quality of life. This chapter explores some of the options available if you are unable to work, and suggests where you can find more information to explore these options further. About the author
After his HIV diagnosis in 1996, Nitto Marquez approached the Asian Community AIDS Services (ACAS) for information and support. His natural leadership, insight and passion for supporting others led him to join the ACAS board. Nitto worked for the Toronto People With AIDS Foundation from 2001 to 2008 as intake worker, speakers bureau co-ordinator and then benefits and assistance case manager. Nitto co-founded Gay Asians Toronto in 1980, and the Toronto chapter of the Sisters of Perpetual Indulgence in 1981. Through his community involvement, he touched many people and raised HIV awareness by sharing his story publicly. Nitto died in April 2008.
CONTENTS
Continuing to work after an HIV diagnosis Disability programs Income replacement and other financial assistance programs Covering medical expenses
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Continuing to work after an HIV diagnosis

Many people now continue to work after an HIV diagnosis. But, if you have to leave work because of an HIV-related illness, you may want (or need) to return to work after your health has improved. However, you may have to negotiate with your employer about time off for doctors appointments or for days when you feel unwell. You may find a regular nine-to-five working day is no longer possible, and requesting flexible working hours may be part of this negotiation.
Your financial security is extremely important; it is even more so when you discover you have HIV.
If your workplace has a human resources department, you can consult with staff there, but be aware that the negotiations could become delicate and intimidating, especially if you need to let people know you are HIV-positive. Your local AIDS service organization can guide you along this processstaff there have worked with clients who have made these decisions in the past.
Disability programs
Your financial security is extremely important; it is even more so when you discover you have HIV. Money does matter. The stress of worrying about finances is hard enough on people in good health; these worries can affect your health
Many employers provide some form of insurance for a limited time or for longer periods if their employees become unable to work because of ill health.
at a time when you can least afford it. Creating a budget for yourself and sticking to it will be essential if you decide to leave work for a period of time, or permanently. You will need to be realistic about the things you need and those you can do without. Sticking to a limited budget will likely be a difficult experience, but this is a necessary adjustment to the situation of reduced income. In this section well talk about the work-related disability programs that may be available to you if you choose to leave work after finding out you are HIV-positive.
Short-term and long-term disability

Many employers provide some form of insurance for a limited time (short term) or for longer periods (long term) if their employees become unable to work because of ill health. Employees may be qualified to apply for these benefits
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once they have fulfilled their contractual obligations (such as probationary period, required working hours and contributions to pension/disability funds). Whenever available, this is often the best option when considering a break from work. Most work-related short-term disability programs offer a higher percentage of your salaryanywhere from two-thirds to full paythan government disability programs. Workplace disability programs may also include coverage for the cost of your drugs and other health needs. While some employers offer short-term disability benefits (usually to a maximum of about three months), not all provide long-term disability options. If you are unable to go back to work after your employers short-term disability benefits run out, and your employer does not offer long-term disability benefits, you may have to look for alternative sources of income such as employment insurance benefits or a longer-term solution such as the Canada Pension Plan or the Quebec Pension Plan disability program. These plans are covered in more detail on page 276. If you do enroll in a long-term disability benefits program, your employer may encourage you to apply for Canada Pension Plan or Quebec Pension Plan disability program as well. Usually, any money that you receive monthly from a government disability plan is deducted from your private long-term disability benefit. Try to find out exactly what benefits are available to you through your employers private disability insurance program and for how long they are available. This information provides a good starting point for your decisions. If you have any reservations about revealing your HIV status, it is useful to know that you do not need to be specific about your exact medical condition. All that is needed is your doctors certificate stating that you are unable to work due to poor health.
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Try to find out exactly what benefits are available to you through your employers private disability insurance program and for how long they are available.
Employment Insurance sickness benefits are paid to eligible applicants who have to stop working because of illness for a maximum of 15 weeks.
Employment Insurance sickness benefits

Employment Insurance sickness benefits are paid to eligible applicants who have to stop working because of illness for a maximum of 15 weeks. To receive Employment Insurance sickness benefits, you must apply for the benefit and have worked a minimum of 600 hours in the last 52 weeks (or since your last
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Employment Insurance claim). You must also provide a record of employment from your employer and a medical certificate that confirms how long you will be unable to work. If you are eligible, there is a two-week unpaid waiting period before these benefits start to be paid to you. The basic employment insurance sickness benefit rate is 55 per cent of your average insured earnings, with a yearly maximum insurable earning. Your employment insurance sickness benefit, like regular employment insurance earnings, is taxable income. If you work while receiving this benefit, you must declare your earnings. These will be deducted, dollar for dollar, from your benefits. You are required to provide reports to Service Canada every two weeks to demonstrate that you continue to be eligible for benefits. If you are still unable to return to work at the end of the period covered by your employment insurance sickness benefit, you may be able to receive regular employment insurance benefits without a waiting period.
If you cannot continue working at any job on a regular basis for health reasons, and you meet the eligibility requirements, you may be able to receive a portion of your Canada Pension Plan or Quebec Pension Plan disability program monthly.
For more information about applying for employment insurance sickness benefit, visit your local Service Canada office.
Canada Pension Plan and Quebec Pension Plan disability programs

If you cannot continue working at any job on a regular basis for health reasons, and you meet the eligibility requirements, you may be able to receive a portion of your Canada Pension Plan or Quebec Pension Plan disability program monthly. The amount of money you will receive depends on how long you have been paying Canada Pension Plan or Quebec Pension Plan premiums, and how much you have paid into these plans. There is a maximum amount you can receive from these programs each month. The rate is adjusted each January to reflect the cost of living. Disability benefits from all other sources will be affected by the Canada Pension Plan or Quebec Pension Plan disability program benefits you receive. For example, provincial or private disability pensions deduct, dollar for dollar, any amount you receive from the Canada Pension Plan or Quebec Pension Plan. While most provincial or territorial disability benefits are non-taxable, Canada Pension Plan or Quebec Pension Plan disability program benefits are
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taxable income. Canada Pension Plan or Quebec Pension Plan disability pensions do not provide any other benefits (like drug coverage or health-related devices) apart from the financial assistance, and are not guaranteed for life. Periodic medical assessment may be required to see whether your condition has improved enough to go back to work. Dependent children (under 18 years of age) of Canada Pension Plan or Quebec Pension Plan disability program recipients are also eligible to receive financial assistance from the program. The Canada Pension Plan or Quebec Pension Plan disability program offers a disability vocational rehabilitation program for recipients who are willing to go back to work, if their doctors agree they can cope with a back-to-work rehabilitation program. This program may involve returning to work at the company where you were employed at a modified version of your previous job, or retraining and upgrading to prepare you for a different job. On this program, you are also allowed to earn up to a certain amount before taxes through employment without informing Service Canada and without losing the disability benefit. This earning is taxable income that will need to be declared on your income tax return. Once you have earned up to the allowable amount from working, you must inform Service Canada so their personnel can assess your goals regarding future employment. If you are only able to work occasionally, you may be able to earn more without compromising your disability benefit, but it is important to inform Service Canada, as each case is assessed individually. If you return to full-time employment and give up the disability benefit, but have to stop working again within five years of your return because of your existing disability, you may request a rapid reinstatement into the program. This rapid reinstatement will restart your Canada Pension Plan or Quebec Pension Plan disability program benefit in less time than it took after your initial application. For more information on Canada Pension Plan or Quebec Pension Plan disability program benefits, visit your local Service Canada office.
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Provincial and territorial disability programs

Unfortunately, not everyone has work-related disability plans to fall back on. In this case, government and other financial assistance programs may be available. Please note that all government social assistance programs have eligibility requirements, and you must have legal status in Canada to apply. Most provincial and territorial governments now recognize HIV as a perma-
Most provincial and territorial governments now recognize HIV as a permanent medical condition that makes you eligible to apply for long-term disability benefits.
nent medical condition that makes you eligible to apply for long-term disability benefits. The criteria for acceptance into these programs include financial eligibility and a medical assessment process by the programs medical adjudication team. Provincial disability programs are also asset-tested, which means you will need to prove that your financial assets at the time of application do not exceed the maximum set out in the programs policies. The financial assistance offered by provincial and territorial disability programs includes an allowance for basic needs and shelter. The amount of financial assistance varies by province or territory, and by the number of people enrolled as dependents within the family unit other than the main registrant. Basic dental and vision costs are also covered by most programs, along with the cost of prescription drugs, including most anti-HIV drugs. Many provinces provide an extra allowance for medically required diets and cover travel costs for visits to your healthcare providers. Other subsidies may be available for clients with dependent children, such
Many provincial assistance programs recognize the episodic nature of HIV disease and accommodate the possibility of returning to full-time or part-time employment while receiving benefits.
as a winter clothing allowance, child-care costs and an allowance for newborn babies. Financial assistance may also be available for assistive devices such as wheelchairs or hearing aids. Decisions to provide assistance for these devices are usually made on a case-by-case basis. Many provincial assistance programs recognize the episodic nature of HIV disease and accommodate the possibility of returning to full-time or part-time employment while receiving benefits. Employment start-up benefits may be available from your provincial or territorial social services ministry to help you with costs of going back to work, such as the work clothes and equipment required to fulfill the job function. You will be required to report any earnings while receiving provincial or territorial disability benefits and a percentage of your earnings will be deducted
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from your monthly financial assistance payment. If you decide to go back to work full time and give up the disability benefit, transitional healthcare benefits may be made available until work-related or other private healthcare benefits are in place, usually upon completion of your workplaces probationary period. To find out what is available to help you get reintroduced into the workplace, contact the ministry in your province or territory that oversees employment issues. If your attempt to return to work is unsuccessful and you decide to re-enroll into the disability program, keep in mind that the procedure for reinstatement could vary in each province or territory. Some may require that you undergo a medical reassessment, while others provide quicker reinstatement into the program. For a complete list of eligibility requirements, please consult your local Ministry of Community and Social Services, or the AIDS service organization in your area. They may be able to assist you in filling out your application forms or by answering questions related to your disability application.
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Many employers offer insurance to their employees through a plan in which the premiums are paid by the employee through payroll deductions.
Income replacement and other financial assistance programs

Group insurance
Many employers offer insurance to their employees through a plan in which the premiums are paid by the employee through payroll deductions. Coverage will vary from plan to plan. Some insurance plans provide wage replacement over a short- or long-term period if you become too sick to work, and most will provide for medical, dental, vision and hospital expenses as well as for some complementary and alternative therapies. Membership in most group insurance plans is voluntary, meaning that you have the choice to apply and join, or not. It is normal procedure to undergo a medical assessment before joining one of these plans, and being HIV-positive may make you ineligible for some or all of the group insurance benefits. To find out what benefits are available to you, speak directly with the human resources
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department at your workplace (where available) or see your manager to discuss what is offered by the group insurance policy.
Private insurance
Private insurance, like group insurance, provides a number of benefits to eligible members. Some policies cover wages lost because of illness, extra health-related expenses, and financial settlements to your beneficiaries through life insurance after you die. To be eligible for private insurance, you will need to pay a regular premium,
Being HIV-positive may mean you are ineligible for a private insurance contract.
usually on a monthly basis, and you will usually have to undergo a medical examination as a part of the condition for signing the policy or contract. Being HIV-positive may mean you are ineligible for a private insurance contract, as many have rules about enrolling people with pre-existing conditions such as HIV. Private insurance is big business, and even when you are admitted into a program without a medical assessment, certain rules may override the insurance companys obligation to make any future payment. Always read the fine print, and see a lawyer if you have any doubts or questions about a private insurance
Social assistance is available to anyone over age 18, as long as you meet your municipalitys eligibility criteria. Benefits include a basic allowance, an allowance for rent and a drug eligibility card with which you can pay for most prescription drugs.
policy before you sign it.
Municipal social assistance (welfare assistance)

Social assistance is available to anyone over age 18, as long as you meet your municipalitys eligibility criteria. This generally means you must have legal status in Canada, reside in the municipality where you are applying, and have no source of income for the month in which you file your application. A fixed address is usually not necessary to apply, although you will receive less money if you cannot provide proof of monthly rental expense. This is an asset-tested program, which means you will need to prove that your financial assets at the time of application do not exceed the maximum set out in the programs policies. Benefits include a basic allowance, an allowance for rent, a drug eligibility card with which you can pay for most prescription drugs, a special diet supplement allowance for recipients with qualifying health conditions, and community start-up and maintenance benefits to help you get settled in the community, if necessary.
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Retirement benefits
The availability of anti-HIV drugs has meant that many people with HIV can look forward to living into their retirement years. However, the complications of living longer with HIV, along with the diseases associated with old age, make it financially challenging for many seniors with HIV to meet their daily needs, especially those who have not worked for a long time, have used up their life savings or are transitioning from social assistance programs. Some of the financial security pension plans available to most legal residents of Canada are discussed below. Currently there are no retirement pensions or health benefits specific to seniors with HIV.
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Canada Pension Plan and Quebec Pension Plan

A Canada Pension Plan or Quebec Pension Plan retirement pension is a monthly benefit paid to people who have contributed to the Canada Pension Plan or Quebec Pension Plan. The pension is designed to replace about 25 per cent of the earnings on which your contributions were based. Eligibility requirements for a retirement pension include having made at least one valid contribution to the plan, that you are either at least 65 or if you are between 60 and 64 you meet the earning requirements of the program. Your retirement pension does not start automatically. You must apply for it unless you already receive a Canada Pension Plan or Quebec Pension Plan disability benefit and have just turned 65. At that point, your disability benefit automatically converts to a retirement pension. Your retirement pension is based on how much and for how long you contributed to the Canada Pension Plan or Quebec Pension Plan. The age at which you choose to retire also affects the amount you receive. Canada Pension Plan or Quebec Pension Plan pensions are taxable income, and monthly income tax deductions may be made upon request. Along with your retirement pension, you may also be qualified to receive the Old Age Security pension (see following page), a monthly benefit available to most Canadians 65 years of age or older. For more detailed information on the Canada Pension Plan and Quebec Pension Plan, visit your local Service Canada office.
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Old Age Security pension

The Old Age Security pension is a monthly payment available to most Canadians 65 or older. You must apply to receive benefits. If you meet the eligibility requirements, you may be entitled to receive the Old Age Security pension even if you are still working or have never worked. The Old Age Security pension, like most other retirement pensions, is taxable income. There is a maximum annual income requirement to be eligible for the Old Age Security pension. Pensioners with a net income over the maximum
The Old Age Security pension is a monthly payment available to most Canadians 65 or older.
allowed must repay part (or all) of their Old Age Security pension amount. The pension may be paid to people living outside of Canada if they lived in Canada for at least 20 years after reaching the age of 18, were a legal resident or Canadian citizen when they left the country and they lived or worked in a country that has a social security agreement with Canada. If you do not fall within any of these qualifications, Old Age Security pension will only be paid for the month that you left Canada and the six months following. For more information about the Old Age Security pension and other supplementary income for seniors, visit your local Service Canada office.
The Guaranteed Income Supplement

The Guaranteed Income Supplement provides additional money, on top of the Old Age Security pension, to low-income seniors living in Canada. To be eligible for the Guaranteed Income Supplement benefit, you must be receiving the Old Age Security pension. The Guaranteed Income Supplement application must
The Guaranteed Income Supplement provides additional money, on top of the Old Age Security pension, to low-income seniors living in Canada.
be renewed every year, usually by filling out your income tax return by the April 30 deadline. The Guaranteed Income Supplement stops being paid when your annual income upon retirement from sources other than the Old Age Security pension (for example, from Canada Pension Plan or Quebec pension Plan retirement, private or foreign pensions or RRSPs) reaches a maximum amount. You could also stop being paid the Guaranteed Income Supplement if you leave Canada for more than six consecutive months or if you fail to file your income tax within the stipulated deadline of April 30. While the Guaranteed Income Supplement is a non-taxable income, you will still need to declare it in your yearly income tax returns.
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For more information about the Guaranteed Income Supplement for lowincome seniors living in Canada, visit your local Service Canada office.
The Federal Extraordinary Assistance Program and the Multi-provincial and Territorial Assistance Plan
The Federal Extraordinary Assistance Program and the Multi-provincial and Territorial Assistance Plan are tax-free monetary benefits compensating Canadians who were infected by HIV through contaminated blood and blood products. The payments were originally given to people infected with HIV through blood products who signed to waive future court claims against the federal and provincial governments. In December 1998, the federal, provincial and territorial governments announced a financial assistance package for spouses, partners and children of Extraordinary Assistance Program recipients who also became HIV-positive because of their relationship with that person. The assistance program for eligible secondary infected individuals is one lump sum payment of $240,000. A signed waiver is required from recipients to protect the government from future court claims before payments are made.
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There are several federally funded programs to help refugees to Canada establish themselves in their new country.
Immigration Loans Program

The Immigration Loans Program is a federally funded program in which loans are approved according to the applicants needs and ability to repay. Loans are largely given to government-assisted or privately sponsored Convention refugees in Canada, see Chapter 17, Immigrants, refugees and non-status people with HIV. The loans may be approved to pay for the costs of medical examinations abroad, travel documents and transportation to Canada. Assistance loans are also available to newcomers to cover expenses such as housing rental, telephone deposits and work tools. Interest is charged on Immigration Loans Program loans. The interest rate is set each January by the Department of Finance.
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The Resettlement Assistance Program

There are several federally funded programs to help refugees to Canada establish themselves in their new country. The Resettlement Assistance Program is provided by the Government of Canada to people admitted to Canada as government-assisted refugees. These funds are given to help pay for necessities such as temporary shelter, help in finding permanent shelter and basic household items. The program also assists the refugee with income support for up to one year or until the person becomes self-sufficient, whichever comes first.
Income tax credits

People with HIV may be eligible for a non-refundable tax credit (or tax break) to reduce the amount of income tax they have to pay in a year. You will need to apply for a Disability Tax Credit Certificate, have it completed by a qualified
The Canadian Health Act ensures that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct charge. These include doctor and hospital services and in-hospital drugs.
health practitioner and submit the form with your income tax declaration. If your disability is designated as permanent, you only have to submit this form once, in the year you make your first claim. If another person is supporting you (for example, a spouse or a family member), any unused portion of your disability credit may be claimed by that person.
Deferring your property tax

If you are disabled and unable to pay for the property tax on your home, you may be eligible to have these taxes deferred. Instead of you making the yearly payments, these taxes can be paid through a government loan, which you must repay if and when you sell your property, or which your beneficiaries must pay after your death once your estate is settled
Covering medical expenses

Access to health services in Canada
The Canadian Health Act ensures that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct
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charge. These include doctor and hospital services and in-hospital drugs. There is no coverage for services provided by psychologists, chiropodists, acupuncturists, chiropractic doctors and many other alternative healing therapists, optometrists or ambulance services. Apart from the medically necessary hospital and doctor services covered by the Canadian Health Act, provinces and territories may provide services not covered by the Act. For example, some provinces cover certain dental services provided by certified oral surgeons. These services are provided at the discretion of each province and territory. The one vital service provided by all of these provincial health plans is a drug plan (pharmacare) that guarantees access to necessary drugs at no cost, or a very reasonable one, to eligible residents in Canada.
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The Non-Insured Health Benefits Program is a national health program administered specifically for eligible members of the First Nations and Inuit.
Non-Insured Health Benefits program

The Non-Insured Health Benefits Program is a national health program administered specifically for eligible members of the First Nations and Inuit. It is a supplemental program designed to meet medical, vision and dental needs not covered by provincial or territorial insurance plans or private insurance companies. To receive the benefits, an eligible recipient must be a resident of Canada and one of the following: a registered Indian according to the Indian Act; a member of the Innu communities of Davis Inlet and Sheshatshiu; an Inuk recognized by one of the Inuit Land Claim organizations; an infant less than one year of age, whose parent is an eligible recipient. Benefits under this program include: prescription drugs and approved over-the-counter medications listed on the Non-Insured Health Benefits Program Drug Benefit List; medical transportation when necessary; dental procedures; medical supplies and equipment; vision; crisis intervention counselling; provincial healthcare premiums, where applicable.
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The Non-Insured Health Benefits Program covers the lowest-cost drug alternative, also known as the generic drug. Only if the patient has an adverse reaction to the generic drug will the Non-Insured Health Benefits Program pay for a drug with a higher cost. The Non-Insured Health Benefits Program is a supplement to other plans that you may have. In other words, if you are receiving any other disability or social assistance health benefits, or have medical coverage under any other plan, it is your responsibility to let the NIHB program know about it. For the nearest Non-Insured Health Benefits Program office in your local
The Interim Federal Health Program provides temporary medical coverage for refugee claimants during their settlement period in Canada prior to their qualification for provincial healthcare coverage.
area, visit the First Nations, Inuit and Aboriginal Health section of the Health Canada Web site.
Interim Federal Health Program

The Interim Federal Health Program is a program administered by Citizenship and Immigration Canada. It provides temporary medical coverage for refugee claimants during their settlement period in Canada prior to their qualification for provincial healthcare coverage. Interim federal health coverage is usually valid for 12 months, although this period may vary. The Interim Federal Health Program provides only essential and emergency health services for the treatment and prevention of serious medical and dental conditions. as well as contraception, prenatal and obstetrical care, essential prescription drugs and costs related to the immigration medical examination. Once provincial coverage starts, refugees are eligible only for supplemental coverage under the Interim Federal Health Program, which covers emergency dental, vision and medication costs. The Interim Federal Health Program is not designed to replace provincial health plans and does not necessarily provide the same coverage available to permanent residents. For more information about assistance for refugee assistance programs, visit the Citizen and Immigration Canada Web site.
Claiming medical expenses on income tax

Revenue Canada allows all taxpayers to claim medical expenses that are not covered by any private or government subsidy programs. This may reduce
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the amount of income tax you must pay. You may include costs for services provided by doctors, dentists or nurses, for health-related devices such as hearing aids, wheelchairs and prescription eyeglasses, for prescription drugs and also any premiums you paid to private health plans. If you have questions regarding what medical expenses may be claimed in your tax declaration, contact the Revenue Canada office nearest you.
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Resources
HIV and Poverty in Canada Information about assistance programs for people with HIV includes Directory of Income and Support Services across Canada (www.hivandpoverty.ca/) Service Canada Information on benefits and pensions (www.servicecanada.gc.ca) Federal, Provincial and Territorial Drug Access Programs Information about drug benefit programs across Canada Citizen and Immigration Canada Information about refugee assistance programs (www.cic.gc.ca)
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CONTENTS
Legal issues
This chapter is designed to answer some of your questions about HIV and the law. It will provide you with legal information related to HIV such as disclosure, privacy and confidentiality and discrimination. It offers more general information about lawyers, legal aid and practical issues such as how to prepare a will. About the author
Paul Higgins was called to the Ontario Bar in 1999 and joined Jordan Battista LLP in March 2007. Paul has extensive experience in the areas of criminal, family and personal injury law and his areas of practice include Real Estate, Wills and Estate Planning. Paul has practiced law in Weyburn, Saskatchewan, and Edmonton, Alberta. During his time at law school, Paul maintained a summer job as the Fundraising Coordinator for AIDS New Brunswick.
Legal information and legal advice HIV transmission and the criminal law Privacy and confidentiality How to fight discrimination Forced-testing laws Lawyers and legal aid Planning ahead
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Legal information and legal advice

This chapter is designed to answer some of your questions about the law. It will provide you with general legal information. It is not legal advice. It is not a substitute for getting legal advice. The difference between legal information and legal advice is important. Legal information can help you understand the law and legal options, but it is general. This chapter provides an overview of some of the general principles of the law. The information may not apply to your specific situation.
The law can change at any time. So speak with a lawyer to make sure you get up-to-date legal information and legal advice.
Your circumstances may be complex. And the law in your province or territory may be different from the law in other provinces and territories, or the general information in this chapter. Legal advice is specifically about your situation and can help you to decide what to do. If you want legal advice you should talk to a lawyer licensed to practice law in your province or territory. We have included at the end of this chapter a list of organizations you can contact to ask for legal advice. The law can change at any time. So speak with a lawyer to make sure you get up-to-date legal information and legal advice.
A person has a legal duty to disclose his or her HIV-positive status to sexual partners before having sex that poses a significant risk of HIV transmission. This includes anal or vaginal intercourse without a condom.
HIV disclosure and sex
There have been two Supreme Court of Canada decisions about the legal duty an HIV-positive person has under the Criminal Code to disclose his or her HIV status to a sexual partner. According to these cases: A person has a legal duty to disclose his or her HIV-positive status to sexual partners before having sex that poses a significant risk of HIV
HIV transmission and the criminal law

In Canada, the Criminal Code defines criminal offences. The Criminal Code applies across the country. Courts interpret and apply the Criminal Code when they decide legal cases of people charged with criminal offences.
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transmission. This includes anal or vaginal intercourse without a condom. Your duty to disclose your HIV status when having sex other than intercourse is not clear. A person can be convicted of a crime for not disclosing his or her HIVpositive status before having sex that poses a significant risk of transmission, even if the other person does not actually become infected. In other words, it is a criminal offence to expose someone through sex to a significant risk of getting HIV. A person may have a legal duty to disclose his or her HIV-positive status before having sex that poses a significant risk of transmission even if he or she knows that the sexual partner also has HIV. A person who knows there is a real possibility that he or she has HIV (but has not received an actual HIV-positive test result) may have a legal duty to tell sexual partners about this risk before having unprotected sex. There is only a duty to disclose when there is a significant risk of transmitting HIV. The law is clear that vaginal and anal sex without a condom currently pose a significant risk. However, the law is unclear about whether a person living with HIV has a duty to disclose his or her status when engaging in other sexual acts (like vaginal or anal sex with a condom, or oral sex without a condom or other barrier) that have a lower risk of HIV transmission than unprotected anal or vaginal sex. It could be argued that the risk of transmission is low enough in the case of other activities that it should not be considered a significant risk, and therefore the person has no legal duty to disclose. But courts in Canada have not yet confirmed this.
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The law is unclear about whether a person living with HIV has a duty to disclose his or her status when engaging in other sexual acts with a lower risk of HIV transmission than unprotected anal or vaginal sex.
Women and HIV disclosure

The criminal law may affect women living with HIV differently than men. Up to the end of 2008, fewer than 10 women had been criminally charged in Canada for having sex without disclosing their HIV status to their male partners. The criminal law has also been applied to mothers living with HIV. Criminal charges cannot be laid against a woman for failing to take steps to prevent the transmission of HIV during pregnancy or labour (for example, refusing to take anti-HIV drugs during the pregnancy ). However, a pregnant woman with HIV who does
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not tell her healthcare provider that she is HIV-positive, or a mother who risks transmitting HIV to her child through breastfeeding, could face criminal charges.
HIV disclosure and sharing drug use equipment

No Canadian court has yet decided whether an HIV-positive person who uses recreational or street drugs has a legal duty to disclose his or her HIV status to someone with whom he or she is sharing drugs and equipment to use drugs (for example needles, crack pipes, etc.). Sharing certain drug use equipment (such as needles and syringes for injecting) is a high-risk activity for transmitting HIV. Therefore, it is safest to assume that this would be considered a significant risk of transmission under the law, meaning a person would have a legal duty to disclose his or her HIV-positive status.
The duty of confidentiality is placed on healthcare professionals to keep your personal health information confidential, except in exceptional circumstances and under specific conditions.
Privacy and confidentiality

The right to privacy is a fundamental right recognized under Canadian law. With rare exceptions, people with HIV have a right to: decide when, how, to what extent and to whom they will disclose their personal information; control the use and disclosure of their personal health information, and who has access to that information; know how their personal information is going to be used and safeguarded. Federal, provincial and territorial governments are required to respect your right to privacy by not interfering with it. Those governments are also required to take steps to ensure that other people and organizations do not breach your right to privacy. The duty of confidentiality is placed on healthcare professionals to keep your personal health information confidential, except in exceptional circumstances and under specific conditions. Healthcare professionals include doctors, nurses, psychologists, dentists and other people that work in health care.
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Some limits on the right to privacy

It is important to realize that the rights to privacy and confidentiality are not absolute. Competing social or community values and interests may trump your right to privacy and the duty of confidentiality owed to you. Here are some of the situations where that may be the case. Public health law Under provincial and territorial laws, public health authorities and certain healthcare professionals like doctors and nurses are given legal powers to prevent the spread of infectious diseases. For example, when someone tests positive for HIV, another sexually transmitted disease or a disease like tuberculosis, the doctor must report the person to provincial public health authorities. Another example is partner notification (also known as contact tracing) that happens when someone tests positive for a sexually transmitted infection. Public health authorities have the power to contact a persons past sexual partners to tell them to seek medical advice. But public health authorities should not use the name of the infected person. To prevent harm to someone Courts have decided that in specific, narrowly defined circumstances, the duty of confidentiality owed to you can be broken to protect someone from being harmed by you. Here are the circumstances: there is a clear risk of harm to a known person or group of persons; the person or group will suffer serious injury or death; the harm is about to happen. Legal investigations and court proceedings Police investigating a possible crime, and courts hearing legal cases, can force your personal health information to be disclosed without your consent. (But the police and courts cannot force you to answer questions or to testify in a criminal case against you, since people have a legal right against self-incrimination.) Laws also give administrative investigators, decision makers and tribunals the power to force the disclosure of information, including personal health information. Exceptions written into laws that protect the privacy of personal information These laws include sections that allow government officials and staff in institutions like hospitals to disclose your health information without your consent. This could mean contacting a relative or friend if you are injured or ill, contacting the police as part of the investigation of an offence, or disclosing your
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health information to find out if you are eligible for health or health-related benefits. Forced-testing laws For more information, see the section on Forced-testing Laws, on page 299.
What you can do if your privacy is breached

If your right to privacy has been violated or your confidential personal health information has been disclosed without your consent, you may be able to file a complaint with a government agency responsible for hearing privacy complaints. This type of agency is often called a privacy commissioner, or information and
If your right to privacy has been violated or your confidential personal health information has been disclosed without your consent, you may be able to file a complaint with a government agency responsible for hearing privacy complaints.
privacy commissioner. You can also file a lawsuit in civil court against an organization or person who breached your privacy. This area of law is still developing. In some provinces, people have had some success bringing these breach of privacy cases to court. However, even in successful cases, the courts have tended to give people only small amounts of money to compensate them. If a healthcare professional has breached your confidentiality, you can file a complaint with the organization that licenses and regulates that type of professional. Healthcare professionals are licensed and regulated in the province or territory where they work. For example, if you are in Regina and want to file a complaint against a dentist, you would contact the College of Dental Surgeons of Saskatchewan. If you live in Quebec, your privacy is also protected in the Quebec Charter of Human Rights and Freedoms. That means that the Commission des droits de la personne et des droits de la jeunesse has the power to investigate a breach of your privacy and to work toward the settlement of your complaint.
How to fight discrimination

Discrimination can take many forms (spoken or written words, behaviours, official or unofficial policies and laws). The motive or intent is irrelevant in the eyes of the lawit can be discrimination even if the person does not mean to discriminate against you. Discrimination is unjust and takes away peoples dignity. Laws have been put in place to try and prevent people from being
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treated unfairly. These laws also give people a process to fight for their rights when they have been treated unfairly and illegally. As a person living with HIV, you may experience discrimination because of your HIV. HIV and AIDS are both considered a disability under the law in Canada, so people living with HIV are protected by these laws because they have HIV. Or you may face discrimination because you are gay or are assumed to be gay, because you are a person of colour, or because you have an addiction to drugs. Or you may face discrimination based on one or more of the other protected grounds of discrimination: ancestry, place of origin, ethnic origin, colour, citizenship, religion, creed, sex, sexual orientation, age, marital status, family status, disability, receipt of public assistance and conviction for which a pardon has been granted.
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HIV and AIDS are both considered a disability under the law in Canada, so people living with HIV are protected by these laws because they have HIV.
Human rights laws and complaints

The Canadian Human Rights Act and the provincial and territorial human rights laws have been put in place to protect people from discrimination on the protected grounds listed above. These laws also protect people when they are treated unfairly because another person wrongly believes they have HIV or the other person associates them with people living with HIV. The Canadian Human Rights Act protects people against discrimination in: employment by the federal government or a federally controlled industry (including the military); services offered by the federal government or federally controlled industry (for example, Employment Insurance, Canada Pension Plan, banks, airlines, railways, telecommunications, and the federal civil service); housing provided by the federal government. The Canadian Human Rights Commission accepts complaints from people who say they have faced discrimination in any of these federal areas. If your complaint is not about one of these federal areas, you can file your complaint with your provincial or territorial human rights commission. (If you live in British Columbia or Ontario, then you should file your complaint directly with the human rights tribunal in that province.) The human rights law of your province or territory forbids certain forms of discrimination by private businesses
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and private employers, provincial and municipal governments, and many other organizations (like unions, schools, colleges and universities, and voluntary organizations and clubs). Most cases of discrimination fall under provincial and territorial laws. If you want to file a complaint, it is important not to let too much time pass. The time limit for filing a complaint varies among the different provinces and territories. For example, the Canadian Human Rights Commission can decide not to deal with your complaint if it is filed more than a year after the alleged discrimination occurred. Under Saskatchewan law, the time limit to file a complaint is two years, while in Manitoba it is only six months. Some commissions have the power to extend the time limit in exceptional circumstances. It is illegal for anyone to try to get even with someone who files a complaint, gives evidence in a complaint or otherwise helps someone with a complaint.
More information about fighting discrimination at work

In addition to human rights laws, there are other ways of fighting discrimination at work. The federal government has a written policy on HIV in the workplace, which covers all federal employees, including people in the armed services and RCMP. Provinces, municipalities, unions, professional organizations and private companies may have similar policies. Often workplace policies give people a right to make a complaint, which will be handled inside the organization. If you try to resolve discrimination through such an internal complaint process, do not forget about the time limits for filing a human rights complaint. If your internal complaint is not successful or not taken seriously, you dont want to miss out on your chance to file a complaint with a human rights commission or tribunal. You can also launch a lawsuit in court. But a lawsuit probably wont get you your job back and is usually a long and expensive process. And while you can represent yourself in a lawsuit, the law is complex and the legal system is difficult to figure out. So you will probably want to seriously consider hiring a lawyer to represent you. If you work in a unionized workplace, your collective agreement (in other words, the contract in your workplace) probably protects you from discrimina-
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tion. Unionized workplaces have special ways of settling workplace disputes and complaints. If you have faced discrimination in a unionized workplace, you can probably file a grievance. Speak with your union representative to get more information about your collective agreement, discrimination and filing a grievance.
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Forced-testing laws
Several Canadian provinces have passed laws that allow a person to be tested for HIV (and certain other blood-borne infections) against his or her will and the test results disclosed to someone else. These laws can be used by people like police officers, prison guards, firefighters and paramedicswho work in jobs where they may be exposed to another persons blood or other body fluids. People who help out in an accidentsometimes called good Samaritans can also use these laws. Here is a simplified example of how these laws work. If a persons blood or other body fluid gets on a police officer during an arrest, the police officer can ask the person to get tested for infections (or to tell the police officer the results of tests he or she has had). If the person refuses to get tested (or refuses to disclose his or her health information), the police officer can apply to a public health official or judge to have the persons blood drawn and tested for certain blood-borne infections. The police officer will be told the results of the tests. A person can fight an order to have his or her blood tested, but will probably need a lawyer to help fight the order. At the end 2008, Ontario, Alberta, Nova Scotia and Saskatchewan had these types of forced-testing laws. Manitoba passed a law in 2008, but it was not yet in force at the end of 2008. There is the strong likelihood of such laws being passed in other provinces and territories.
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Lawyers and legal aid

Your lawyer acts as your adviser and advocate. The role of a lawyer is to advise you of your legal rights, tell you what the law says, and help you understand how legal systems and procedures work. A lawyer can also represent you in bringing a complaint, a lawsuit, when you have been charged with a criminal offence, in negotiations, in court, or in front of other decision-making groups. If you hire a lawyer, he or she can only take instructions from you or someone else you designate for that purpose.
The role of a lawyer is to advise you of your legal rights, tell you what the law says, and help you understand how legal systems and procedures work.
There are many reasons why you might want to see a lawyer. Maybe you or a spouse/partner needs legal assistance in immigrating to Canada. You may have been charged with a criminal or provincial offence and require representation. Perhaps you have experienced discrimination in your workplace, at school or from a public or private institution. Perhaps you are having difficulty in dealing with an employer, a landlord or with an insurance company. You may also be experiencing issues relating to marriage, family and child custody and access. You may also wish to see a lawyer to get help in completing a will, a power of attorney or a living will or to receive advice in estate planning.
Lawyers fees and legal costs

Lawyers often charge clients on an hourly basis and can be expensive. Some lawyers charge a lower hourly fee for people who do not have a lot of money. In this case, the fee is based on how much money you make or how much money you have. This is called a sliding scale. Some types of legal work are charged on a flat-rate basis. A lawyer may take your case pro bono, where you do not have to pay the lawyers fees, but you may still have to pay for other costs in your case. But this does not happen often. Some provincial and territorial law societies have set up organizations to encourage and promote lawyers taking on more pro bono work. They act as a conduit between the lawyer and prospective pro bono clients.
Legal aid
Each province and territory offers a program of free (or subsidized) legal services to people who cant afford lawyers. Usually this legal service is called legal aid.
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Legal aid services are often provided by lawyers who work alone or in law firms. In some provinces, legal aid services are also provided by legal aid offices or clinics. The government runs some legal clinics or offices, others are run like community organizations, and law schools often have legal clinics. Legal aid clinics and offices are staffed by lawyers and people like paralegals and law students who assist the lawyers. Whether you are eligible for legal aid will depend upon your case and your financial situation. Depending on how much money or other financial resources you have, you may be asked to pay for some of the costs of your case. To find out what types of cases are covered in your province or territory, you should contact a legal aid office. To find a legal aid lawyer or legal aid clinic in your area, contact the provincial or territorial law society, the local legal aid office, a law school or even your healthcare professional. See the last section in this chapter to find out how to contact these organizations.
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Each province and territory offers a program of free (or subsidized) legal services to people who cant afford lawyers. Usually this legal service is called legal aid.
Questions to ask your lawyer

These are some questions to ask a lawyer before you hire him or her so you know where you stand. How much money do you charge per hour? Do you offer a sliding scale for fees? Can you estimate how much time my case will need? Can you charge me for my case on a flat-rate basis and if so how much will it cost? Do you take pro bono cases? If so, what things will I have to pay for and how much will they cost? Do you accept legal aid certificates? Do you work with licensed paralegals, student lawyers, articling students or junior lawyers? (They can work on your case at a cheaper rate and keep your total costs down.) Are there any expenses I will have to pay for up front (such as faxes, letters, court filing fees, etc.)? Do you have experience in my type of case? What are the strong and weak points of my case?
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If I win my case, will the court award me money to cover some or all of the costs of the case? If I lose my case, will the court make me pay for the cost of the other sides case?
Planning ahead
An HIV diagnosis is not the death sentence it used to be. With the advances
Planning in advance for illness and death can help you keep control over your healthcare, your money and your life, and help ensure that the people you leave behind are better taken care of.
that have been made in HIV treatment and care, people can live with HIV for years in good health. Many experts even predict that, with proper treatment and care, newly diagnosed people with HIV can live out something close to a full, natural lifespan. However, death is one of the few certainties in life, and one that all of us will eventually face. Planning in advance for illness and death can help you keep control over your healthcare, your money and your life, and help ensure that the people you leave behind are better taken care of.
Powers of attorney for personal care and living wills

A medical power of attorney (sometimes called a power of attorney for medical/ personal care) or a living will (also known as an advance directive or medical directive) is a document containing your wishes about your future healthcare and/or personal care. Your instructions can be specific or general. All provinces have passed laws that support medical powers of attorney and living wills. In addition to your wishes about your medical care, your medical power of attorney/living will should also contain the name of the person you designate to ensure your wishes are followed. This person is called a substitute decision maker (sometimes referred to as a proxy). If you find that making decisions for a possible future illness is too difficult, then you may only want to name your substitute decision maker. If you have not named a substitute decision maker in a medical power of attorney or a living will, the doctor will usually seek consent from your next of kinthat is, your closest relativea parent, a legal (possibly common-law) spouse, a grown child or a sibling.
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Powers of attorney for property

A power of attorney for property is a document you sign that gives a person of your choice (your attorney) the power to look after your financial affairs. Appointing an attorney means that there is someone who can look after your financial affairs if you are not able to do so. This power can be time limited, or it can continue indefinitely (this is called an enduring or continuing power of attorney). A power of attorney allows your attorney to manage your financial affairs on your behalf if you are unable to do so. This could include paying bills, managing bank accounts, paying or collecting rent, and buying or selling property. In order for your power of attorney to be legal, it has to be written in a specific way. A lawyer or notary can help you prepare this document. Or, if you wish, you can buy a form from a stationery store or download a form from the Internet and write up the power of attorney yourself. As long as you are mentally competent, you can cancel the power of attorney at any time. If it has never been used, you can simply destroy it. Otherwise, an enduring power of attorney/continuing power of attorney for property will come to an end if you cancel it, or in other circumstances like bankruptcy, death, or where a court appoints someone to manage your affairs.
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Wills
A will is a document that says what you want done with your assets (personal property and money owed to you) when you die. You can also include directions for your funeral or burial in your will. If you are a parent, you can name a legal guardian for your minor children and decide whether or not that person or persons will have access to your childrens inheritance. You can also set up a trust fund for your children, so that they have money to take care of things like their education. Finally, you can name an executorthe person who will be legally responsible for carrying out the instructions in your will. You can write your own will, or you can hire a lawyer or notary to write it for you. If you decide to write your own will, you can fill in a standard will form. (You can find these at many office supply stores.) You can also make what is called a holograph will, which must be entirely in your own handwriting.
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(It cant have any mechanical printing or typing anywhere on it.) You will state that this is your last will and testament. You must distribute all of your assets. The will must have a date on it and end with your signature. Holograph wills are not recognized as legal wills in every province or territory. If you die without a valid will you are said to have died intestate. If this happens, everything that you own will be distributed amongst your nearest relatives, according to a government system written in provincial and territorial laws. If no relatives are known or found, your assets will go to the government.
It is illegal in Canada for anyone, including a doctor, to counsel you to commit suicide or assist you with committing suicide. However, it is not illegal for you to do it yourself.
Suicide and assisted suicide

Suicide means purposely ending your life. Assisted suicide is suicide committed with help from another person or group of people. It is illegal in Canada for anyone, including a doctor, to counsel you to commit suicide or assist you with committing suicide. However, it is not illegal for you to do it yourself. Furthermore, in Canada, a mentally competent patient has the legal right to refuse treatment and a valid refusal obligates a doctor to forgo treatment, even if honouring the refusal will result in death. Suicide can affect your life insurance policy. Depending on the policy and how long you have had it, if you commit suicide, the benefit may be decreased or not be paid out at all.
Resources
The Canadian HIV/AIDS Legal Network Comprehensive legal and human rights information related to HIV (www.aidslaw.ca) HIV disclosure: a legal guide for gay men Booklet on HIV and the law for people living with HIV HIV & AIDS Legal Clinic (Ontario) Information and Advice about HIV and the Law in Ontario (www.halco.org) Criminal Law and HIV: Info sheet series Series of five information sheets from the Canadian HIV/AIDS Legal Network (www.aidslaw.ca)
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Websites for further information on legal issues Legal aid in Ontario (www.legalaid.on.ca) Legal aid in other Provinces and Territories (www.legalaid.on.ca/en/links/other.asp) Law Societies and Lawyer Referral Services (www.flsc.ca/en/lawSocieties/websites.asp) Canadian Human Rights Commission (www.chrc-ccdp.ca) Provincial and Territorial Human Rights Agencies (www.chrc-ccdp.ca/links/default-en.asp) Office of the Privacy Commissioner of Canada (www.privcom.gc.ca) Provincial and Territorial Privacy Commissioners (www.privcom.gc.ca/resource/prov/index_e.asp)
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Housing
Your housing is one of the keys to managing your health. It is as important as income, food and your treatment plan. Research studies like the community-based Positive Spaces, Healthy Places have shown that the type of housing you live in, the amount of money you spend each month for your housing, and how often you have to move directly affect your health when you are living with HIV. About the author
Ruthann Tucker, a principal with Tucker and Associates, has worked in the HIV field for more than 18 years, including appointments as an expert advisor, communitybased research initiatives with the Ontario HIV Treatment Network (OHTN) and executive director at Fife House, Canadas largest provider of supportive housing for people living with HIV. She has worked at AIDS Vancouver Island, was a founding member of the Pacific AIDS Network and a consultant for Vancouver Coastal Health. Ruthann has also held appointments to the Ontario Advisory Committee on HIV/AIDS, which provides strategic advice to the Ontario Minister of Health. Ruthann is a principle investigator for the study Positive Spaces, Healthy Placesa prospective study to explore the impact of housing support and homelessness on health outcomes of people with HIV. The study is funded by the OHTN and Canadian Institutes of Health Research.
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CONTENTS
Types of housing Housing that meets your needs How to access housing How to keep your housing
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Types of housing
Secure, stable housing provides a foundation for health and helps reduce the impact of HIV stigma and discrimination. People who have a stable place to live and the supports they need, feel better physically and mentally, and are more likely to follow their treatment plan. Having a safe home has even been shown to help prevent HIV transmission. In Canada, apart from home, condominium or apartment ownership, there are several different types of housing, including:
People who have a stable place to live and the supports they need feel better physically and mentally, and they are more likely to follow their treatment plan.
private-market rental housing, which means renting a house, apartment or room from a landlord. The person or company that owns the apartment building or rental house determines the amount of rent charged. The landlord/owner is usually trying to make a profit from renting out the property, and will charge market rates; non-profit rental housing, which includes private non-profit and public non-profit (mainly operated by an independent organization funded by government). Non-profit housing operators usually charge just enough rent to cover the cost of running the building plus a bit extra in case the roof needs to be fixed or the building needs to be painted. Non-profit co-operatives, better known as co-ops, charge affordable but still marketrate rents. Co-operatives are regulated by the federal government and their own by-laws; social or subsidized housing is often funded by provincial or municipal governments and operated by an independent organization. Most social housing is rent geared to income: the amount of rent you pay is based on your income. Social housing is set aside for people who cannot afford to live in private-market or even non-profit housing. The social housing subsidy that the government provides may be linked to a particular unit in a specific building, which means a person has to live in that unit to receive the social housing subsidy; or, it may be connected to the person so he or she can take advantage of it wherever he or she lives (a portable subsidy). In some cases, co-operatives set aside a certain number of units for people living with HIV; in others, there are buildings dedicated for people with HIV, such as Fife House in Toronto, McLaren Housing in
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Vancouver or the Tommy Sexton Centre in St. Johns. Some communities have housing for people from specific populations, such as the housing programs for Aboriginal people in Vancouver; supportive housing or assisted living is housing plus support services provided by staff, such as helping people bathe, making their meals or helping with banking and grocery shopping. Supportive housing is usually available to people who have either a physical or mental disability and need support services as well as housing to live as independently as possible. Some communities have supportive housing specifically designated for people living with HIV; shelters or transitional housing provide temporary housing. Because there is such a shortage of affordable housing, many people with and without HIV live in a shelter at some point in their lives. Transitional housing is temporary: people stay for a fixed length of time until they find more permanent or stable housing.
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The type of housing that you want and can find will depend on many
Housing that meets your needs

The type of housing that you want and can find will depend on many factors, including cost, location, availability (some communities do not have social or supportive housing), your health needs and your preferences. As you live with HIV over time and your needs change, you may need different types of housing. For example, HIV can make you unwell for periods of time. If you own your home or are paying market-rate rents, will you be able to afford the rent or mortgage if you are not able to work? Do you have the resources to see you through those periods? Think about more than the roof over your head. Look around your home or apartment. Will you be able to manage stairs? How wide are the hallways? Would a scooter fit through if you needed one in the future? It is important to take the time to think about how you can make your housing as secure and safe as possible, and get access to the supports you need. Not every type of housing is for every person. Some people like to live in shared housing with roommates, while others want to have their own space.
factors, including cost, location, availability (some communities do not have social or supportive housing), your health needs and your preferences.
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Some need supportive housing all the time and some only need support some of the time. Some types of housing may have a negative impact on your health. For example, in a shelter you may be more likely to be exposed to tuberculosis. It is important to think about the type of housing that best meets your needs.
How to access housing

Housing is one of the most urgent unmet needs facing people living with HIV in Canada.
Housing is one of the most urgent unmet needs facing people living with HIV in Canada. If you are living with HIV, you are probably living on a very tight budget. Most people with HIV live on a fixed income. This means you only have a certain amount to pay for your housing costs every month. If you are on a fixed income, it is important to assess your housing needs to ensure you have the best place you can afford, with the necessary supports in place to maintain your health. Just as there are many types of housing, there are many ways to find or access housing. Looking for a place to live is like having a full-time job. It is workhard work. You may get discouraged. Please remember that you are not alone and there are people who can help you find out about the housing in your area.
Some communities have housing help centres where a housing worker will help you through the maze of finding a place to live.
Some communities have housing help centres where a housing worker will help you through the maze of finding a place to live that is right orin most casesokay for you. The staff who work in these centres will know the rules and regulations about social or subsidized housing and supportive housing in your community; the rules change from province to province and municipality to municipality. Staff may be able to tell you if you qualify for subsidized housing based on your household income, and they will help you fill out the forms. Its important for you to know that if you live with someone else, that persons income is counted as well as yours to determine if you qualify for social or subsidized housing. Some places have centralized waiting lists for subsidized housing; other places do not. There is usually a very, very long waiting list. But there may be a rule or regulation that gives people with HIV priority for subsidized housing. To get onto a waiting list or get priority for subsidized or supportive housing,
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people with HIV usually have to go through a process of having their health assessed. Your doctor may have to fill out a formsometimes called a medical priorityand disclose information about your health. This may speed up the time you have to wait to find a place you can afford. You have to give your consent before your doctor can share any of your health information. Remember: if you are thinking about moving from one part of Canada to another or from one place to another, find out about the housing situation first. The availability, cost and quality of housing for people with HIV may vary greatly from one part of Canada to another. Some AIDS service organizations have staff, volunteers or peersother people living with HIVwho are specifically trained to help you find a place to live.
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Some AIDS service organizations have staff, volunteers or peers other people living with HIVwho are specifically trained to help you find a place to live.
How to keep your housing

Housing providers, landlords and shelters work within a set of rules that they have to follow, like turning the heat on by a certain time of the year and making repairs to rental units. People living in rental, social or supportive housing and in shelters are also expected to follow rules, such as paying the rent on time. To keep your housing, you have to follow the rules. But you also have rights; landlords cannot evict you without cause. If you are about to lose your housing, it is important to know that there are services that can help. Housing workers can help you negotiate with your landlord and may even be able to help you keep your place. Legal services, such as legal aid clinics, can also help. Some are specifically designed to assist people living with HIV and some serve anyone who cannot afford a lawyer. If your housing is at risk, do not wait until the last minute to get help. The sooner you seek assistance with your housing situation, the better the outcome will probably be. It is also important to remember that you are part of the solution in finding and keeping a place to live. The place you call home is more than an apartment or a room or a house. How you feel about where you live is very important in maintaining your overall
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health. In fact, if you are living with HIV, your housing is one of the foundations for health. If you have stable housing, you will be healthier, less stressed and enjoy a better quality of life. For more information on the types of housing and supports available and on how to find and keep affordable housing, contact your local AIDS organization, talk to other people living with HIV or look for resources on the Internet.
Resources
Positive spaces healthy places A community-based research initiative to examine housing and health in the context of HIV (www.positivespaceshealthyplaces.ca)
The place you call home is more than an apartment or a room or a house. How you feel about where you live is very important in maintaining your overall health.
Other relevant resources can be accessed on CATIEs website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
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Personal health record

(Photocopy this page and give to a friend in case of emergency)
Name Home address Date of birth Email address Phone number Employer phone number Health card number Private health insurance information: Age Date of HIV diagnosis Other medical conditions: Weight Height Blood type
Allergies and drug sensitivities
Family history (for example, has a family member ever had diabetes, heart disease, cancer, etc?) Condition Family member (relation) Condition Family member (relation)
Healthcare providers Specialty Family doctor HIV specialist Pharmacy Name Contact information
In case of emergency, contact Name Relationship Phone
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History of anti-HIV drugs (Keep this list current) Anti-HIV drug Dosing schedule Special instructions Date started Date stopped Reason for stopping
History of other drugs and/or therapies (Keep this list current) Name of drug or therapy Dose (if applicable) Special instructions Date started Date stopped Reason for stopping
History of significant medical events (such as hospitalization, serious illness, surgery) (Keep this list current) Date Description of event Notes
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Monitoring tests (Fill in this chart with the results of each viral load test, CD4+ test and any other tests you want to monitor, such as cholesterol or triglyceride levels) Date of test Viral load CD4+ cell count
Symptoms and side effects record Describe symptom/side effect When did it occur and how long did it last? How was it treated? Notes
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Notes for visit to doctor

(Photocopy this page and use for each visit) Changes in my health since the last visit (for example, new symptoms, illnesses, etc.)
Difficulties or challenges with my treatment and/or care
Questions for my doctor
Things I need from my doctor (for example, prescription refill, referral)
Action plans
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Index
A
Abacavir 160 Aboriginal healing traditions 57-58 Abortion 219 Abstinence (sexual) 83 birth control 219 Access to health services Health Act 284-285 Access to housing 312-313 Access to treatment drugs 264-268 clinical trial participation 269-270 compassionate access 270 continuous coverage (when moving) 268 federal government drug coverage programs 266-267 federal Special Access Program 269 for immigrants and refugees 244-245 hospitals and clinics 268 no coverage 268 over-the-counter drugs 270-271 prescription drugs 264-268 private health insurance coverage 267-268 provincial and territorial drug coverage programs 265-266 unapproved drugs 269-270 Acquired immunodeficiency syndrome See AIDS Adherence (to drug regimen) 137-139 Administrative staff 19 Aerobic exercise 202 Affirmations and visualization 55 Aging (with HIV) 249-260 anti-HIV drug side effects 250 coping with loss 258-259 financial issues 259 screening tests 257-258 side effects and symptoms (of HIV) 251-257 AIDS 6, 13 AIDS service organizations 3, 20, 73, 199-200 AIDS test See HIV antibody test Albumin test 117 Alcohol 44 Alcohol abuse See Substance use ALP (alkaline phosphatase) test 116 ALT (alanine aminotransferase) See Transferases Alternative insemination 215 Alternative therapies See Complementary and alternative therapies Anal cancer 177-178 in men 120 in women 120 Anti-HIV drugs 106, 126-142 access for immigrants 244-245 access to 264-270 and aging 250 and children 230-231 and food 31-32 and HIV life cycle 131-134 and substance use 44 changing treatment 139-141 drug combinations 134-135 drug interactions 44, 139 drug resistance 140-141 first line treatments 135-137 genotype test 109 hypersensitivity 159-160 preventive treatments 101-102 resistance and adherence 137-139 side effects 140, 146-164, 204, 251-257 starting treatment 135-137 stopping treatment 141 treatment decisions 126-127 treatment guidelines 127 Antioxidants 33-34 Antiretroviral drugs See Anti-HIV drugs Anxiety 69 Aromatherapy 55 Assisted living housing 311 Assisted suicide 304 AST (aspartate aminotransferase) See Transferases Avascular necrosis 155-156 Ayurvedic medicine 56
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B
B vitamins 34 Babies with HIV See HIV in babies Behaviour change 98 risk behaviour 98-102 safer sex 78-85 Bilirubin test 116-117 Biopsies 118 Birth control 216-219 abortion 219 abstinence 219 condoms 216 diaphragms and cervical caps 218 emergency contraception 219 hormonal contraceptives 217-218 natural birth control 219 permanent birth control (sterilization) 218 spermicides 218 Blood sugar test 117 Blood tests 114-118 blood sugar test 117 CD4+ cell count test 107-108 complete blood count (CBC) 115 differential white blood cell count 115 electrolytes test 116 hemoglobin level tests 115 HIV antibody test 8 lipid tests 117-118 liver function tests 116-117 PCR test 214 platelet count 116 red blood cell count 115 syphilis 88-89 urea and creatinine 116 viral load test 108-109 white blood cell count 115 Body fat redistribution 151-152 Body weight 28-29 Bone loss problems 155 and aging 253-254 bone death (avascular necrosis) 155-156 bone scan 119 osteoporosis 155 Bone scans 119 Breach of privacy 296 Breast cancer 120
C
Calcium 35 CAM (complementary and alternative medicine) See Complementary and alternative therapies Canada Pension Plan 276-277, 281 Cancer 111, 119-120, 176-178, 254 anal cancer 120, 177-178 breast cancer 120 cervical cancer 119, 177, 211 in men 120 in women 119-120 Kaposis sarcoma 176 Non-Hodgkins lymphoma 176-177 other cancers 178 prostate cancer 258 Candidiasis See Fungal infections Carbohydrates 29 Cardiovascular disease See Heart problems Case managers 18 CD4+ cells 9-12 CD4+ cell count 107-108, 168 percentage 108 test 107-108 Cervical cancer 119, 177, 211 Cervical caps 218 Children and HIV See HIV in children Chlamydia 86-87 Cholesterol 117-118, 152-153 Clinical trial participation access to treatment drugs 269-270 women 209 CMV infection (cytomegalovirus) 169 Co-infections See HIV co-infections Combination therapy See Anti-HIV drugs Community health representatives 18-19 Community health workers 20 Compassionate access to anti-HIV drugs 245 to unapproved drugs 270 Complementary and alternative therapies 19, 53-64, 74, 196 Aboriginal healing traditions 57-58 access to 59, 270 affirmations and visualization 55
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aromatherapy 55 ayurvedic medicine 56 costs 59 herbal medicine 56 homeopathy 56 massage and touch therapies 57 meditation 57 mind/body medicine 57 naturopathy 58 Tai Chi 58 Traditional Chinese medicine 58 yoga 58 Complete blood count (CBC) 115 Conception 214-216 alternative insemination 215 sperm washing 215 Condoms 79-80 birth control 216-219 female condom 80 HIV-positive partners 83-84 intercourse 79-80 lubricants 79-80 oral sex 82 sex toys 82-83 Confidentiality See Privacy Continuing care 187-188 Contraception See Birth control Counselling and support 71-74 complementary and alternative therapies 74 disclosure 71-72 from healthcare professionals 73-74 from partners, families, friends 72 from the community 73 rehabilitation 191-205 Creatinine 116 Criminal code disclosure 292-294 CT scans (CAT scan) 119 Culture tests 118 Cytomegalovirus See CMV (cytomegalovirus)
Diaphragms 218 Diarrhea 149-150 Diet 28-36 carbohydrates 29 fats 29-30 protein 30 Dietary supplements 32-36 access to 270-271 antioxidants 33-34 minerals 32-36 vitamins 34 Dieticians 18 Differential (white blood cell count) tests 115 Digestive problems 147-150 diarrhea 149-150 intestinal gas 150 loss of appetite 148-149 nausea and vomiting 147-148 Disabilities 192-193 Disability benefit programs 274-279 Canada Pension Plan and Quebec Pension Plan Disability Programs 276-277 Employment Insurance sickness benefits 275-276 provincial and territorial disability programs 278-279 rehabilitation services 198 short-term and long-term disability 274-275 Disclosure 71-73, 99-100, 221-222, 292-294 by women with HIV 221-222, 293-294 legal issues 84, 292-294 privacy 294-296 sharing drug use equipment 294 to children 231-235 to pre-teens 234 to school-aged children 233 to sexual partners 84, 221-222, 292-294 to teens 234 to toddlers/preschoolers 232-233 Discrimination 296-299 at work 298-299 human rights laws and complaints 297-298 Doctor-patient relationship 20-24, 112 substance use disclosure 47 Doctors 16, 21-24, 73 Drinking water safety 173-174 Drug allergies 159-160 Drug coverage programs 265-271 continuous coverage (when moving) 268 federal government drug coverage program 266-267 hospitals and clinics 268
D
Dentists 17-18 Depression 70, 256 Diabetes 112, 153-154, 255
323
no coverage 268 private health insurance coverage 267-268 provincial and territorial drug coverage programs 265-266 Drug interactions (HIV therapy) 139 Drug resistance 109 anti-HIV drugs 7, 140-141 genotype test 109 resistance and adherence 137-138 Drug safety 264 Drug treatment See Access to treatment drugs, Anti-HIV drugs, HIV treatment Drug use See Substance use Drug use equipment See Sharing drug use equipment Drugs anti-HIV drugs 125-142 over-the-counter drugs 270-271 prescription drugs 264-268 recreational drugs 40-49 unapproved prescription drugs 269-270
F
Fats (dietary) 29-30 Federal Extraordinary Assistance Program 283 Federal government drug coverage programs 266-267 Female condoms 80 Financial assistance programs 274-287 Canada Pension Plan and Quebec Pension Plan 276-277, 281 disability programs 274-279 Federal Extraordinary Assistance Program and the Multi-provincial and Territorial Assistance Plan 283 Guaranteed Income Supplement 282-283 Immigration Loans Program 283 income replacement and other financial assistance programs 279-284 income tax credits 284 medical expenses 284-287 municipal social assistance 280 Old Age Security pension 282 property tax deferral 284-285 Resettlement Assistance Program 284 retirement benefits 281 Financial issues and aging 259 income and support 274-287 medical expenses 284-287 retirement benefits 281 First line treatments (for HIV) 135-137 non-nuke-based therapy 136 once-daily therapy 137 protease inhibitor-based therapy 136 First Nations medical expenses 285-286 Food 28-31 and anti-HIV drugs 31-32 diet 28-36 safety 31, 174 Forced testing laws 299 Fungal infections 173
E
Eating well See Diet Efavirenz 44, 70, 141, 152, 159, 162 Electrolytes test 116 Emergency contraception 219 Emotional health 67-74, 110 and aging 256 anti-HIV drug side effects 162-163 anxiety 69 coping with loss 258-259 depression 70 HIV diagnosis 2-3 self esteem 68 stress 38-39, 68-69 substance use 70-71 Emotional support See Counselling and support Employment Insurance sickness benefits 275-276 Exercise 36-38, 202-203 aerobic exercise 202 rehabilitation 202-203 resistance exercise 202
G
Gas (intestinal) See Intestinal gas General practitioners (GPs) See Doctors Genital herpes 89-90 Genital warts 90 GGT (gamma-glutamyl transpeptidase) test 116 Gonorrhea 87-88
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Group insurance 279-280 Guaranteed Income Supplement 282-283 Guided imagery See Affirmations and visualization Gynecological care 210-211 birth control 216-219 pregnancy 211-216 prenatal care 212-214
substance use 40-49 with complementary and alternative therapies 59-63 Heart problems 111, 152-153, 251-252 Hemoglobin level tests 115 Hepatitis 112, 171-172 Herbal medicine 56 Herpes 172-173 Highly active antiretroviral therapy (HAART) See Anti-HIV drugs HIV (human immunodeficiency virus) 6-12 and aging 250-260 co-infections 170-173 differences in women 208-209 disclosure 71-73, 99-100, 292-294 HIV antibody test 8, 241 HIV life cycle 131-134 legal issues 292-304 monitoring 106-109 positive prevention 96-103 re-infection 84 superinfection 84 treatment 126-141 HIV antibody test 8, 241 forced testing laws (employment) 299 HIV co-infections 170-173 fungal infections 173 hepatitis 171-172 herpes 172-173 sexually transmitted infections 173 tuberculosis (TB) 170, 172 HIV in babies how will I know if my baby is HIV-positive? 214 PCR test 214 vertical transmission (mother to newborn) 212 HIV in children 228-235 anti-HIV drugs 230-231 disclosure to children 231-235 HIV in men anal cancer 120 prostate cancer 120, 258 HIV in women 208-222 anal cancer 120 birth control 216-219 breast cancer 120 cervical cancer 119, 211 clinical trial participation 209 conception 214-216 dating, sex and relationships 221-222 disclosure to partners 221-222, 293-294
H
HAART (highly active antiretroviral therapy) See Anti-HIV drugs Harm reduction principles 98-99 substance use 40-41 Headaches 161-162 Health Act 284-285 Health insurance complementary and alternative therapies 59 group insurance 279-280 private health insurance 267-268, 280 rehabilitation services 199 Healthcare costs complementary and alternative therapies 59 drug treatment 264-271 medical expenses 284-286 rehabilitation services 199 Healthcare professionals 16-20 complementary and alternative therapists 19, 74 counselling and psychotherapy74 dentists 17-18 doctors 16, 21-24, 73 mental health professionals 19 nurses and nurse practitioners 17 nutritionists and dieticians 18 pharmacists 17 physiatrists 195 psychiatrists 73 rehabilitation therapists194-197 social workers and case managers 18 Healthcare team 16-23 for women 210 rehabilitation 194-196, 204 Healthy living 28-50, 109 diet 28-36 dietary supplements 32-36 exercise 36-38, 202-203 stress management 38-39
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gynecological care 210-211 HIV differences in women 208-209 menopause 219-221, 252-253 pregnancy 211-216 prenatal care 212-214 psychosocial issues 209-210 tests 119-120, 258 HIV prevention alternative insemination 215 behaviour change 98 conception 214-216 condoms 79-84, 216 disclosure 99-100, 221-222, 293-294 harm reduction 98-99 PEP (post-exposure prophylaxis) 102 positive prevention 96-103 PrEP (pre-exposure prophylaxis) 102 safer sex 78-85 shared responsibility 98 sharing drug use equipment 47-48, 294 sperm washing 215 vertical transmission 212, 214 HIV re-infection 84 HIV superinfection 84 HIV test See HIV antibody test HIV transmission 7-8 low viral load 85, 102, 215 pregnancy 211-212, 213-214 preventive treatments 102 risk behaviour 98-102, 215-216 vertical transmission (mother to newborn) 212 HIV treatment 126-141 anti-HIV drugs 126-141 changing treatment 139-141 first line treatments 135-137 for children 230-231 resistance and adherence 137-139 starting treatment 130-131, 135-137 stopping treatment 141 treatment decisions 126-127 treatment guidelines 127 HIV-related infections See Infections HIV-related symptoms See Side effects and symptoms (of HIV) Homeopathy 56 Hormonal contraceptives 217-218 Hospices 188
Hospital stays 182-188 being admitted 184-186 communication 186-187 going home 187-188 preparing for hospital stay 184 Hospitals and clinics access to treatment drugs 268 Housing 312-314 access to housing 312-313 assisted living 311 how to keep your housing 313-314 non-profit rental housing 310 private-market rental housing 310 shelters or transitional housing 311 social or subsidized housing 310-311 supportive housing (assisted living) 311 HPV (human papillomavirus) 90, 119-120 and anal cancer 90, 120, 177-178 and cervical cancer 119, 177, 211 and genital warts 90 Human immunodeficiency virus See HIV (human immunodeficiency virus) Human papillomavirus See HPV (human papillomavirus) Human rights laws and complaints 297-298 Hypersensitivity (to anti-HIV drugs) 159-160
I
Illegal immigrants See Non-status people Imaging (medical) 119 Immigrant services 242-246 access to medical care 242-245 access to anti-HIV drugs 244-245 legal support 245-246 Immigrants 239 Immigration Loans Program 283 Immigration system 238-239 immigrants, refugees and non-status peoples 239-240 HIV testing 241-242 medical inadmissibility 241-242 Immune system 8-10 and aging 251-257 life-threatening infections and cancers 168-169 monitoring 106-109 Income replacement and other financial assistance programs 279-284 financial assistance programs 279-284 group insurance 279-280
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private insurance 280 Income support and work 200-201 financial assistance programs 279-284 Income tax credits Disability Tax Credit Certificate 284 medical expenses 286-287 Infection prevention 173-176 food safety 31, 174 HIV prevention 78-85, 212, 214-216 pet safety 174 sexually transmitted infections 86-90 vaccinations 175-176 water supply safety 173-174 with children 229 Infections HIV 6-13 HIV co-infections 170-173 HIV re-infection 84 HIV superinfection 84 hygiene-related infections 173-174 life-threatening infections 168-169 sexually transmitted infections 86-90 Injection drug use equipment See Sharing drug use equipment INR (international normalized ratio) tests 117 Insemination See Alternative insemination Insulin resistance 153-154 Interim Federal Health Program 286 Intestinal gas 150 Inuit medical expenses 285-286 Iron (dietary) 35
Legal issues 292-304 disclosure 292-294 discrimination 296-299 forced-testing laws 299 powers of attorney 302-303 privacy and confidentiality 294-296 suicide and assisted suicide 304 wills 303-304 Legal services 300-302 costs 300 immigration 245-246 lawyers 300-302 legal aid 300-301 LGV (lymphogranuloma venereum) 87 Life changes 101 Life-threatening infections 111, 168-169 CMV infection (cytomegalovirus) 169 MAC infection 169 PCP infection (pneumocystis pneumonia) 169 toxoplasmosis infection 169 Lipid tests 117-118 cholesterol 117-118 triclycerides 118 Lipoatrophy See Body fat redistribution Lipodystrophy See Body fat redistribution Liver function tests 116-117 albumin test 117 alkaline phosphatase (ALP) and gamma-glutamyl transpeptidase (GGT) tests 116 bilirubin tests 115-117 INR (international normalized ratio) 117 transaminases 116 Liver problems 157-158 substance use 40-41 Living wills 302 Long-term disability benefits See Disability benefit programs Loss coping strategies 258-259 Loss of appetite 148-149 Lubricants 79-80 Lymphogranuloma venereum See LGV (lymphogranuloma venereum)
K
Kaposis sarcoma 176 Kidney function tests urea and creatinine 116 urinalysis 118
L
Lactic acidosis 161 Lawyers 300-302 fees and legal costs 300-301 immigration 245-246 Legal aid 300-301 immigration 245-246
327
M
MAC infection (mycobacterium avium complex) 169 Marijuana 45-46, 149 Market rental housing 310 Massage and touch therapies 57 Masturbation 83 Medical expenses 284-287 access to health services 284-287 drug treatment 264-268 income tax credits 286-287 Interim Federal Health Program 286 Non-insured Health Benefits Program 285-286 Medical inadmissibility (immigration) 241-242 exemptions 241-242 Meditation 57 Men with HIV See HIV in men Menopause 219-221, 252-253 Mental health See Emotional health Mental health professionals 19, 73 Metabolic problems 150-154 body fat redistribution 151-152 heart problems 152-153 insulin resistance and diabetes 153-154 Mind/body medicine 55 Minerals (dietary) 32-35 calcium 35 iron 35 selenium 35 zinc 35 MRI (magnetic resonance imaging) See Imaging Multi-provincial and Territorial Assistance Plan 283 Muscle problems 160-161 lactic acidosis 161 Mycobacterium avium complex See MAC infection (mycobacterium avium complex)
Non-nuke-based therapy 136 Non-prescription drugs See Over-the-counter drugs Non-profit rental housing 310 Non-status people (immigration) 240 Nurse practitioners 17 Nurses 17 Nutrition See Diet Nutritionists 18
O
Occupational therapy 194 Old Age Security pension 281-282 Once-daily therapy 137 Opportunistic infections See Infections Oral sex safer sex 78 Osteopenia See Bone loss problems Osteoporosis See Bone loss problems Over-the-counter drugs access to 271
P
Pancreatitis 158 Pap tests 119-120 Party drugs See Recreational drugs Patient rights 22-23 Patient-doctor relationship See Doctor-patient relationship PCP infection (pneumocystis pneumonia) 13, 107, 128, 161 PCR test 214 PEP (post-exposure prophylaxis) 102 Peripheral neuropathy 163-164, 204 Personal health record 17, 317-320 Pet safety 174 Pharmacists 17 Physical examination 113 Physical health 36-38 training tips 38 Physical rehabilitation 194-195 occupational therapy 194-195 physical therapy 194 speech-language therapy 195
N
Natural birth control 219 Naturopathy 58 Nausea 147-148 Neuropathy See Peripheral neuropathy Non-Hodgkins lymphoma 176-177 Non-insured Health Benefits Program 285-286
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Physical therapy 194-195 Physicians See Doctors Physiotherapy See Physical therapy Platelet count 116 Pneumocystis pneumonia See PCP infection (pneumocystis pneumonia) Positive prevention 95-103 behaviour change 98 disclosure 99, 100 harm reduction 98-99 principles 98-99 risk behaviour 100-102 shared responsibility 98 Post-exposure prophylaxis See PEP (post-exposure prophylaxis) Power of attorney 302-303 personal care and living wills 302 property 303 Poz prevention See Positive prevention Pre-exposure prophylaxis See PrEP (pre-exposure prophylaxis) Pregnancy 211-216 conception 214-216 Prenatal care 213-216 PrEP (pre-exposure prophylaxis) 102 Prescription drugs access to prescription drugs 264-265 drug safety 264 emotional health 73-74 unapproved prescription drugs 269-270 Privacy 296-298 breach of privacy 296 legal limits 294-296 Private health insurance 280 drug coverage 267-268 Professional help See Healthcare professionals, Lawyers Property tax deferral 284 Prostate cancer 120, 178, 255, 258 Protease inhibitor-based therapy 134 Protein (dietary) 30 Provincial disability programs 278-279 Provincial drug coverage programs 265-266 Psychiatrists 73 Psychological support See Counselling and support
Psychosocial rehabilitation 196-197 work-related 197 Psychotherapy 74
Q
Quebec Pension Plan 281 Quebec Pension Plan Disability Program 278-279
R
Recipes chicken veggie soup 33 fruit shake 36 Recreational drugs 40-47 marijuana 45-46, 148-149 Red blood cell count 115 Refugees 237-246 Rehabilitation 191-205 costs 199 physical rehabilitation 194-195 psychosocial rehabilitation 196 services 194-200 strategies 201-203 Re-infection See HIV re-infection Relationships disclosure 71-72, 99-100, 221-222, 292-294 safer sex 91 sharing drug use equipment 294 Reproductive health See Gynecological care Resettlement Assistance Program 284 Resistance exercise 202 Retirement benefits 281 Right to privacy See Privacy Risk behaviour 100-102 desire for unprotected sex 101 HIV-positive partners 83-84 life changes 101 loss of inhibition 42 preventive treatments 102 resistance and adherence 137-139 serosorting 101 substance use 40-42, 102 Risk of HIV infection See HIV prevention
329
S
Safer sex 78-91 and low viral load 85, 215 between HIV positive partners 83-84 disclosure to sexual partners 84-85, 99-100, 221-222, 292-294 in relationships 91 Scope tests 119 Screening tests See Blood tests, Tests Selenium (dietary) 35 Self care 98-99 coping with loss 258-259 healthy living 27-40, 109 rehabilitation strategies 202-203 stress management 38-39 Self-esteem 68 Serosorting 101 Services to immigrants, refugees and non-status people with HIV See Immigrant services Sex toys safer sex 82-83 Sexual dysfunction 90-91 Sexual health 77-91, 110 and aging 256-257 risk of HIV infection 7 safer sex 78-91 sexually transmitted infections 86-90, 175 Sexually transmitted infections 86-90, 173 chlamydia 86-87 genital herpes 89-90, 172-173 gonorrhea 87-88 HPV and genital warts 90 LGV (lymphogranuloma venereum) 87 prevention 86-90 syphilis 88-89 Shared responsibility 98 Sharing drug use equipment disclosure 294 harm reduction 46-49 Shelters 312 Short-term disability See Disability benefit programs Sickness benefits See Disability benefit programs Side effects and symptoms (of HIV) 129, 146-164 aging 251-257 anti-HIV drugs 140, 204 bone loss problems 155-156
digestive problems 147-151 emotional problems 162-163 headaches 161-162 in children 231 infections, cancer and other complications 111 liver problems 157-158 metabolic problems 150-154 monitoring 106-120 muscle problems 160-161 pancreatitis 158 peripheral neuropathy 163-164 rehabilitation 204 severe drug allergies 160 skin problems 159 Skin problems 159 Sleep problems 162-163 Social assistance 280 Social housing 310-311 Social workers 18 Special Access Program 269 Speech-language therapy 195 Sperm washing 215 Spermicides 218 Sterilization 218-219 STIs (sexually transmitted infections) See Sexually transmitted infections Street drugs See Recreational drugs Stress 68-69, 101 Stress management 38-39 Stroke 152-153 Subsidized housing See Social housing Substance use 40-49, 70-71, 102 alcohol 44 and anti-HIV drugs 44 harm reduction 40-49 liver problems 44 loss of inhibition 42 marijuana 45-46 recreational drugs 47 risk behaviour 43 tobacco 45 Suicide legal issues 304 Superinfection See HIV superinfection Supplements (dietary) See Dietary supplements
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Supportive housing 313 Sustiva See Efavirenz Symptoms See HIV-related symptoms Syphilis 88-89
V
Vaccinations 175-176 for children 229 recommendations 175-176 Vertical transmission (mother to newborn) 212, 214 Viral load 85, 102, 108-109, 140 conception 213 HIV transmission 7 test 108-109 Visitors, students and people on work visas medical requirements 242 Visualization See Affirmations and visualization Vitamins 32-34 access to 270 B vitamins 34 vitamin C 34 vitamin D 34 vitamin E 34 Vomiting 147-148
T
T cells See CD4+ cells Tai Chi 58 Tattoos and piercings 40 TB See Tuberculosis (TB) Territorial disability programs 278-279 Territorial drug coverage programs 265-266 Tests 106-120, 257-258 biopsies 118 blood tests 114-118 bone scans 119 CT scans (CAT scan) and MRI 119 culture tests 118 drug resistance tests 109 for men 120 for women 119-120, 258 genotype test 109 imaging 119 pap tests 119-120, 211 scope tests 119 urinalysis 118 x-rays 119 Tobacco 45 Toxoplasmosis infection 169 Traditional Chinese medicine 58 Transaminases 116 Transitional housing 311 Treatment (of HIV) See Anti-HIV drugs, HIV treatment Trigylceride levels 118, 154 Tuberculosis (TB) 172, 176
W
Water supply safety 173-174 Welfare assistance See Social assistance White blood cell count 115 Wills 303-304 Women and HIV See HIV in women Workouts (exercise) 38 Workplace discrimination 297-299
X
X-rays 119
Y
Yeast infections See Fungal infections Yoga 58
U
Unapproved prescription drugs access to 269-270 Urea and creatinine 116 Urinalysis 118
Z
Zinc (dietary) 35
331

Living With HIV - Managing Your Health

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Living With HIV - Managing Your Health

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Managing your health

a guide for people living with HIV

Managing your health, fourth edition

MANAGING YOUR HEALTH

Chapter 5 Complementary and alternative therapies

Chapter 2 HIV... the basics

Chapter 6 Your emotional health

Chapter 3 Your healthcare team

Chapter 7 Your sexual health

Chapter 4 Healthy Living

MANAGING YOUR HEALTH

Chapter 8 Positive prevention

105 Chapter 9 Monitoring your health

167 Chapter 12 HIV-related infections and cancers

181 Chapter 13 Hospital stays

125 Chapter 10 Treatments

191 Chapter 14 HIV and rehabilitation

145 Chapter 11 Side effects and symptoms

207 Chapter 15 Women and HIV

263 Chapter 19 Access to treatment

273 Chapter 20 Money matters

227 Chapter 16 Children and HIV

291 Chapter 21 Legal issues

237 Chapter 17 Immigrants, refugees and non-status people with HIV

309 Chapter 22 Housing

249 Chapter 18 HIV and aging

317 Personal health record 321 Index

MANAGING YOUR HEALTH

About the author

MANAGING YOUR HEALTH

Dr. Mark A. Wainberg

How to use this book

MANAGING YOUR HEALTH

Youve just been diagnosed with HIV

MANAGING YOUR HEALTH

YOUVE JUST BEEN DIAGNOSED WITH HIV

You have a future

People with HIV now live long, productive lives.

YOUVE JUST BEEN DIAGNOSED WITH HIV

How this book can help you

MANAGING YOUR HEALTH

YOUVE JUST BEEN DIAGNOSED WITH HIV

Managing your health

MANAGING YOUR HEALTH

HIV THE BASICS

How is HIV transmitted?

HIV THE BASICS

MANAGING YOUR HEALTH

HIV THE BASICS

How do you know if you have HIV?

How your immune system works

HIV THE BASICS

CD4+ cells play a central role in the immune system.

MANAGING YOUR HEALTH

HIV THE BASICS

How HIV can make you sick

First stages of HIV infection

HIV THE BASICS

Next stages of HIV infection

MANAGING YOUR HEALTH

HIV THE BASICS

PROGRESS OF TYPICAL UNTREATED HIV INFECTION

HIV THE BASICS