Advocates urges national program for thalassemia

By: Noli A. Ermitanio

Philippine Daily Inquirer
12:06 AM May 17th, 2014

Charles Famini, a 12-year-old with thalassemia, had to ask for help to help mitigate its
burden, which will afflict him for the rest of his life.
Diagnosed with thalassemia when he was around 3-5 months old, Charles had to endure a
monthly blood transfusion, which can be life-threatening at times, and takes in medicine and
supplements, which costs his family P35,000 to P40,000.
That is why Balikatang Thalassemia (Ba-Tha)an organization founded in 1993 by Doctors
Alendry P. Caviles Jr. and Ernesto d J Yuson, and families of thalassemia patients which aims
to create public awareness on thalassemia and uplift the quality of care for thalassemia
patients in the countryis asking the government to step in and set up a National
Thalassemia Program to address the specialized needs of Filipinos with thalassemia.
Ba-Tha made that call during the observation of World Thalassemia Day last May 8 at the
Quezon City Hall, which was highlighted by the oath-taking of Quezon City government
health workers who were trained as Thalassemia Champions. Partners in the private and
public sectors Novartis Healthcare Philippines and the Philippines Charity Sweepstakes
Office (PCSO) were on hand to show their support for patient support groups efforts.
It is every thalassemia patients right to get support from the government [in terms of blood
transfusions, medicine and other needs] because they arent that different from people with
other diseases, Ba-Tha secretary Dr. Ma. Liza Naranjo said.
Meanwhile Dr. Antonieta Inumerable of the Quezon City health department said they are
privileged to contribute in the provision of appropriate monitoring and treatment for Filipino
patients with thalassemia in our communities. She also called on other stakeholders to join
in the fight against this blood disorder.
Burden of thalassemia
Thalassemia is a blood-related disorder which involves the absence of or errors in genes
responsible for the production of hemoglobin, the protein in the red blood cells which carries
oxygen, leading to anemia. Complications include iron overload, bone deformities and
cardiovascular disease. In many regions, the disease is of such magnitude that it represents a
major public health concern.
Elisa Famini, Charles grandmother, recounted her grandchilds struggle with the disease.
We would bring him to Dr. Fe del Mundo Medical Center in Banawe, Quezon City, monthly
for him to have a blood transfusion. Periodic episodes of pain caused by side effects of the
blood transfusions would take a toll on Charles studies, Elisa added. He had to be taken to
the hospital when his belly swelled too big recently.

Thus for Naranjo, it is very fortunate that Quezon City has taken notice of their advocacy and
hopes that, eventually, other cities will too. Were starting to get the ball rolling on this, for
the public to hear about thalassemia and the needs of people afflicted with it.
To counter critics who say that those with the disease are only few in numbers, Naranjo
pointed out that thalassemia is underdiagnosed in the country. In the first place, there is no
screening [for the disease]. We dont have a clear data on the numbers since cases arent well
documented, even though our region is part of the WHOs so-called Thalassemia Belt. The
Mediterranean, some parts of North and West Africa, the Middle East and parts of east and
southeast Asia have a higher outbreak rate of the disease and thus comprise the Belt. she
added that many of thalassemia patients present that day are not even from Quezon City.
Some are from Manila, Cavite, Caloocan and even Pampanga, she said, adding that
Charles, in fact, is from Caloocan.
Patient support
When the government establishes a national program, said Naranjo, it will usher in support
for what she calls the ABCDs of the Thalassemia Alphabet, which are: assessment
provision of reliable, accessible, affordable thalassemia screening for families and
communities; bloodassurance to safe, affordable and accessible leukoreduced red blood
cells for transfusion-dependent thalassemics; chelationprovision of affordable iron
chelators to patients with iron overload; and diagnosticsregular monitoring for end organ
damage due to iron overload; hepatitis B and C screening.
For its part, Ba-Tha seeks to continuously educate thalassemia patients, encourage and
support its members to take an active role, and empower each other to fight against public
ignorance and prejudice by organizing lay forums, media guesting of thalassemia patients and
other activities to increase awareness on thalassemia screening, strengthen blood donations
and improve iron chelation, or the drug therapy to remove excess iron in the blood,
assistance.
The group has partnered with Novartis to launch the ONCOURAGE Health Information
Advocacy, which aims to promote public awareness and continuing medical education on the
prevention, detection and management of cancer and blood disorder. Ba-Tha and Novartis
collaborated with the PCSO, the Philippine Society of Medical Oncology, the Philippine
Society of Hematology and Blood Transfusion, Philippine Foundation for Breast CareKasuso and Touched by Max Philippines for this effort.
Read more: http://business.inquirer.net/170618/advocates-urges-nationalprogram-for-thalassemia#ixzz4J6XU2YDT
Follow us: @inquirerdotnet on Twitter | inquirerdotnet on Facebook