DURING the 11th World Thalassemia Day celebration on Jan. 9, children with thalassemia and their families from Manila and nearby provinces will be converging at the Lung Center of the Philippines to voice the need for policies in the Philippine health care system that will support basic care for thalassemic patients.

Thalassemia is one of the world’s most common single-gene disorders, but it remains largely underdiagnosed in the country. In its most severe form, patients need regular, monthly blood transfusions in order to survive. They also develop lethal iron overload from the blood transfusion, requiring patients take lifelong maintenance of iron chelating agents, averaging around P30,000 per month.

The biggest difficulties faced by the patients and their families are blood shortages and a lack of money to support the needed chelation therapy.

“Thalassemia deserves priority in the country’s health agenda,” says Dr. Liza Naranjo, a pediatric hematologist and officer of the advocacy group Thalassemia Association of the Philippines. “If you are a Filipino thalassemic, the trend is that usually you get overwhelmed with heart and liver complications by age 10 to 13,” she was quoted as saying in a release.

“There is still a lack of regular blood donation for our patients. Unlike in other countries, Filipinos are not yet conscious that blood donation is a social obligation,” the doctor added.

To raise public awareness of thalassemia, a panel discussion with representatives from PhilHealth, the Philippine Charity Sweepstakes Office, and Health Justice will be held.

Actress Heart Evangelista, a thalassemia advocate, together with 36 volunteer artists will conduct an art workshop for 80 children who are suffering from the disease.

The finished art works created by the children will be displayed and sold at Lung Center of the Philippines’ Oxygen Art Gallery to help raise money to support their medical needs.