our voices call out as one

VOICE OF CANCER SURVIVOR FORUM 2011

A National Call to Action for All South Africans

Info

Of the nearly 21 000 cancer deaths recorded per day, worldwide, over two thirds occur in economically developing countries. South Africa is one of these countries. Cancer affects every South African either financially or emotionally in some way. Projections show that, cancer deaths worldwide may exceed combined deaths from malaria, tuberculosis and HIV/AIDS by 2030 making cancer one of the greatest threats to our society and healthcare system. If South Africans are to curb the threat of this preventable and treatable disease, we need to act now, through a focused and collaborative effort. Through one voice fighting for a common goal.

Thirty percent of cancers are preventable, and one-third of cancers are treatable if detected early but statistics dont put a voice to the burden that cancer creates on those affected by it. It is the stories and voices of cancer survivors, their family and friends, and their communities that show its true destructive nature. The Voice of Cancer Survivor Forum was held to create an opportunity for cancer survivors to express their needs regarding quality of care, attitudes, practices, policies and services. It sought to bring together those affected by cancer: cancer survivors, media, NGOs, advocates, the health sector and Government to provide data, information and awareness of

the cancer burden and issues faced by South Africans and in doing so spark an impetus by all to affect change. As a result all of the 200 stakeholder representatives who attended the Forum and committed to taking collaborative action against the threat cancer poses to our health system by adding their voice to a National Call to Action. It is hoped that this commitment to the National Call to Action will spur on activities by each stakeholder group to actively find strategies, develop leadership and implement actions that will create a collective voice against cancer.

Cancer care services must be expanded and must become accessible and affordable for all. By achieving this, many lives can be saved and the quality of life improved for all patients with cancer. The best way to improve service standards is to ask the patients themselves. - alDermaN DaN plato, Cape toWN exeCutiVe mayor.

We were proud to have local experts in cancer burden and associated social issues bring to the fore information that would help gauge the status quo of cancer in South Africa. However, the warmest welcome and thanks was to the survivors and advocates who shared their personal stories. Each story reminded me how survivors no longer need to be the silent heroes but can truly be South Africas Voice of Cancer. - Neil Kirby, ChairpersoN, CampaigNiNg for CaNCer.

The Voices of Cancer Forum brought Discuss the social issues related to together over 250 people affected by cancer in South Africa by creating cancer in an effort to create a platform an encouraging platform for survivors, to address cancer issues and help break of all cultures, to share their stories. down the social stigmas associated Make stakeholders, government and with cancer. the general public aware of the need for national strategies to increase By partnering with Campaigning for and improve cancer related services. Cancer, as lead local agency, cancer survivors and local cancer organisations Discuss channels that could encourage multi level stakeholder involvement had the unique opportunity to tell in the development and their stories. implementation of national strategies to improve cancer-related services. Survivors and advocates spoke with one voice to an audience of government The Forum included presentations leaders, healthcare professionals, from local experts in cancer burden corporate heads and individual and social stigma. Themes of economics, members of their community. political will and ethical practice were From the outset, the Forum aimed to: also addressed by Key Opinion Leaders. Survivors and advocates spoke of the Provide qualitative and quantitative challenges faced in their cancer information that clearly highlighted journey, civil society and government the cancer burden in South Africa, highlighted existing intervention in focusing on access to treatment, cancer control. care and quality of life.

At the end of Day 2 a framework for participation was The opportunity and value of sharing each others points developed and adopted by all Forum participants. of view was acknowledged and it was agreed that The presentations, stories, questions asked and thoughts change comes when we choose to commit to it. shared resulted in the following agreements being It was agreed that it is a human right of each citizen to reached by attending stakeholders: access each aspect of the cancer continuum that is It was agreed that cancer survivors have a valid reason timeous and is free from stigma and discrimination. to make a case with regards to inequalities in quality The role of the media in educating the general access to treatment and care and that we have the right public about cancer and making cancer voices heard to quality healthcare as enshrined in our constitution. was acknowledged. The power of survivors stories was acknowledged as a voice for the voiceless. During the Forum, the civil societys declaration of unity was based on the founding principle that it would The importance of working together to combat our be disrespectful of the courage and conviction shown cancer burden was acknowledged. by each survivor telling their story not to develop a call It was agreed that through defined collaboration civil to action that would act as a mandate to guide all society could speak with one voice to be a powerful actions that strove to ensure a better journey for all tool to affect change for all cancer survivors. cancer survivors.

We all have different yet complimentary roles in combating this disease. We must collaborate in order to see meaningful change. - theuNs botha, WesterN Cape miNister of health.

LIVESTRONG is proud to stand with Campaigning for Cancer, the American Cancer Society and all the participating organisations to present the Voice of Cancer Survivor Forum, a landmark event and significant advancement for the fight against cancer in South Africa. This effort is turning statistics into stories, bringing visibility to gaps in cancer control and highlighting the need for cancer to be a stronger priority on the countrys health agenda. - Doug ulmaN, presiDeNt aND Ceo, liVeSTRONG.

We all have a duty to participate as a collective to ensure that each individuals experience becomes the cornerstone of a National Call to Action.

The collaboration of civil society into a cancer coalition with mandated representatives and publically highlighted strategies. A comprehensive South African voice and support of the UN resolution and high level meeting on the prevention and control of non-communicable diseases taking place in New York, September 2011 and the integration of NCDs into the Millennium Development Goals.

The following themes were highlighted as priorities to form the basis for collaborative strategies and actions for the Voice of Cancer National Call to Action: tHeMe 1: MAKE CANCER A PRIORITY Establishment of a National Cancer Advisory Council by the Minister of Health that has the required stakeholders represented as defined in the Health Act.

tHeMe 2: THE DEVELOPMENT OF A NATIONAL CANCER CONTROL PLAN A national cancer control plan that is succinct and implementable, with quality access for all that has been developed in consultation with stakeholders must be finalised and implemented as a matter of urgency.

tHeMe 3: CANCER REGISTRIES AND DATA A cancer registry, in line with IARC recommendations, that is well funded and resourced, accurate, maintained, has information and findings that are accessible and which data and incidences are utilised by stakeholders to make decisions regarding the management of South Africas cancer burden.

tHeMe 4: INVESTMENT AND FUNDING FOR EDUCATION, TRAINING AND INFRASTRUCTURE Budget and funding relating to control cancer care services must be prioritised and controlled at National Government level. Discrepancies in access to quality cancer care in provinces needs to be assessed and strategies to ensure equality of care for all South Africans be created and invested in effective cancer control initiatives, services and resources.

tHeMe 5: REDUCING STIGMA AND DISCRIMINATION FOR CANCER PATIENTS AND SURVIVORS Any Regulation that defines cancer as treatable or untreatable is unacceptable and must be changed in order ensure that the constitutional rights of cancer patients and survivors are not infringed upon.

Elimination of discrimination of cancer patients in their workplace and in communities through a nationally focused campaign to de-stigmatise cancer, with evidence based and culturally relevant Cancer education, including preventative strategies, information that addresses the social needs of at all levels is imperative and should include survivor patients and survivors and their rights to respect stories in order to highlight the social impact and dignity. cancer has on South African communities. This call to action is not a militant declaration, finger Cancer education must be included in healthcare pointing or blame allocating document but rather practitioners and providers education curriculums an appreciation of our obligations and duties to all nationally and include the roll out and creation of South Africans affected by cancer. For it is not a time appropriate awareness elements. to rest on our laurels due to the fact that the problem has been out-sourced or delegated to a third party. This Call to Action is a declaration of our readiness to stand together to implement and maintain a watchful eye over efforts that will ensure that South Africas cancer burden is significantly reduced.

This is a pivotal year for all of us to step up with a unified voice and continue the drumbeat at every opportunity. The united voice that South African leaders, advocates and cancer survivors presented at the Voice of Cancer Forum is a model for other countries around the world. Along with LIVESTRONG, the American Cancer Society is honoured to be part of this historic event. - JohN r. seffriN, phD Chief exeCutiVe offiCer, ameriCaN CaNCer soCiety.

The Sunower Fund is committed to the Voice of Cancer National Call to Action as we would like to see Government prioritise cancer on the SA Health Agenda. We would also like to see an up-to-date cancer registry in SA that will enable cancer stats and information to be readily available to all stakeholders. - tiNa botha, Ceo the suNfloWer fuND aND surViVor. Cancer needs aggressive and passionate action on an on-going basis. It is about time we had a united voice against Cancer in South Africa to keep focus on our cause and keep us focused on our goals. We at The Vrede Foundation are committed to Voice of Cancers National Call to Action as well as the other NGOs and Stakeholders who are part of the initiative. - berNaDette KestiNg, (Co-fouNDer) the VreDe fouNDatioN.

Our greatest wish is that the stakeholders who are in a position to prioritise the cancer burden will indeed do so - the lives of all cancer patients in South Africa will then improve with necessary changes made in policy, treatment and care. That all cancer patients have rights - including the right to access equitable and quality care We are committed to Voice of Cancer National Call to Action. - reaCh for reCoVery breast CaNCer support group. We hope the unified voice of cancer survivors will be heard and the cancer burden in our country will be addressed at national level. As a cancer survivor group, we the amaBele Belles, wish to add our voice to the Voice of Cancer National Call to Action. - miChelle reNNie, amabele bele aND surViVor.

Poverty, ignorance and lack of functional literacy are killing the children of South Africa unnecessarily. CHOC Childhood Cancer Foundation SA is committed to driving the awareness of childhood cancer into the community. Cancer is often masked by other diseases e.g. HIV/AIDS, TB and malaria and only once these are brought under control is the cancer detected. Only through education will these children survive. We hereby commit to the Voice of Cancer National Call to Action. - fraNCois peeNz, Ceo ChoC ChilDhooD CaNCer fouNDatioN sa aND surViVor. Cancer is becoming more common in younger patients as it affects family dynamics to have a loved one, breadwinner, or child fall ill. Fair healthcare and education for all = empowerment = united Voice of Cancer. - NoeleNe KotsChaN, fouNDer aND DireCtor of piNKDriVe.

It is civil societys responsibility to make this a working document, collaborating together, with one voice, to achieve change for the better in cancer care. Civil society plays a key role in agreeing to cancer plans that will secure better cancer control and cancer services for patients. Cancer is a global priority, and should be a national priority for South Africa. The collaborative effort from NGOs on the Call to Action is long overdue and in this unified effort, we will make sure we get results. - liNDa greeff, people liViNg With CaNCer DireCtor aND surViVor.

Contact Details Lead Agency: Campaigning for Cancer (Association Incorporated under section 21 Companies Act) 2001/028068/07 T: 0861ASK NOW (275669) E: info@campaign4cancer.co.za F: + 27 86 684 8187 Twitter: @Voice_of_Cancer PO: Postnet Suite 297, P/Bag X87, Bryanston, South Africa
N Kirby (Chairman), C Battley (Canadian), S L Galliet, C Davies, L Marthinus, F Magongoa, S D Moodley, C Liebenberg

We as South Africas cancer survivors, civil society and stakeholders commit to take a stand and to be counted by particpating in a strategy that will focus on making cancer care a priority for and to all South Africans. We hereby sign our commitment to this Voice of Cancer Call to Action: