Patients suffering from hemophilia and other bleeding disorders may soon be relieved of high costs of treatments, a Department of Health official said over the weekend.
At a gathering of hemophilia patients and their families in Glorietta Mall on Saturday, Health Undersecretary Vicente Belizario said the DOH would push for the inclusion of hemophilia, von Willebrand Disease and inherited bleeding disorders in the Z Benefit Package offered to PhilHealth members.
Z Benefit Package is aimed at addressing health conditions that trigger prolonged hospitalization and very expensive treatments.
Conditions under type Z, the farthest end of the spectrum, are cases “perceived as economically and medically catastrophic” due to the seriousness of the case.
“After talking to some patients earlier today, I found out that treatment for bleeding in hemophilia patients is very costly. We at DOH will work out that hemophilia and other bleeding disorders will be included in the Z Benefit Package,” Belizario said, rousing a loud applause from the audience.
Hundreds of persons with hemophilia and other bleeding disorders gathered in Glorietta over the weekend to commemorate the World Hemophilia Day which is celebrated around the world on April 17.
Dubbed as “Count Me In,” the two-day activity was organized by the Hemophilia Association of the Philippines for Love and Service (HAPLOS), the national membership organization of persons with hemophilia and other bleeding disorders.
HAPLOS president Ric Felipe, who himself has hemophilia, noted that there are only around 1,200 patients in their registry.
According to the World Hemophilia Federation, there could be around 10,000 Filipinos affected by hemophilia and around 1-million more with von Willebrand Disease and other clotting factor deficiency disorders.
Hemophilia, von Willebrand Disease and clotting factor deficiency disorders are life-long genetic medical conditions where the person’s blood lacks the ability to clot normally. Seemingly minor injuries can cause profuse bleeding. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can lead to death.
Felipe said the cost of treatments for hemophilia and other bleeding disorders are very costly.
Treatment for minor bleeds such as those in joints could cost around P30,000 to P50,000 per day while serious bleeds such as those in the gastro-intestinal tract or the brain could reach hundreds of thousands to millions.
“Many patients die because they could not afford the high cost of treatments or they do not have access to treatment at all,” Felipe said.
On the other hand, despite being considered as a serious and lifelong condition, awareness for hemophilia, von Willebrand Disease and other bleeding disorders remain very low.
Marvin Valladolid, 35, who was at the gathering in Glorietta said that he only found out he had severe hemophilia two weeks ago.
“Three years na po akong pabalik-balik sa ospital. Sabi noong una may von Willebrand daw po ako. Tapos, nitong huli sabi naman hemophilia. (I’ve been in and out of the hospital in the past three years. At first, they said I had von Willebrand. Lately, they said I have hemophilia),” he said.
Out of exasperation, Valladolid came to Manila and sought help of HAPLOS. He was advised to have himself checked at the National Kidney and Transplant Institute and it was found out that he had severe hemophilia.
“Huli na po ang lahat, ngayon lumpo na po ako (It’s too late, now I’m already crippled),” Valladolid lamented.
Unlike other conditions, Hemophilia, von Willebrand Disease and other bleeding disorders receive little public awareness and attention. The World Hemophilia Day is an opportunity for the bleeding disorder community to come together, speak out, and focus on the need to improve and maintain treatment.
“Count Me In” lead campaigner Andrea Echavez said the event was also aimed as a call to action to those with hemophilia, von Willebrand Disease and other bleeding disorders to be more active and be included in the National Hemophilia Registry.
“By knowing our numbers, the government, doctors and organizations like ours could strategize more on a way forward in addressing our concerns,” Echavez, who has von Willebrand Disease, said.
Count Me In Hemophilia Awareness Campaign was organized by HAPLOS and the Philippine Children’s Medical Center and supported by Glorietta, BusinessMirror Group of Publications and Novo Nordisk Hemophilia Foundation.