Filipinos with Hemophilia, von Willebrand Disease (vWD) and other inherited bleeding disorders will finally get assistance from the government if the bill filed by Sen. Grace Poe is passed into law.
The bill mandates the establishment of state-funded hemophilia treatment centers in Metro Manila, Luzon, Visayas and Mindanao. This is long-overdue and a welcome development especially for us patients who perennially need treatments.
Ever since my daughter Isabel (aka Star) and I were diagnosed with vWD about seven years ago, our family has been actively advocating for people with bleeding disorders. After all, this is a hereditary disorder and several members of my side of the family have been diagnosed with it.
My siblings and I became orphaned when we were mostly in our teens when our mother died of uncontrolled bleeding while undergoing surgery. She was only 51.
Isabel and I have been taking turns getting confined due to profuse bleeds. This year alone, I have received almost 200 bag of blood products. Every time we undergo transfusion, I think of the safety of the blood product.
I have all the reasons to be paranoid. In May this year, the Department of Health admitted that they have monitored a staggering increase in HIV-tainted blood donations — 114 bags from January to March from 71 bags during the same period last year. That is a 62 percent increase for one quarter alone!
If the bill filed by Sen. Poe is enacted into law, we will finally be able to get access to safer treatments such as factor concentrates which as of now, remains not affordable for most patients.
Also with the bill, patients will no longer have to endure — pardon the French — ignorant medical practitioners who do not have any idea how to handle bleeds of patients with Hemophilia and other bleeding disorders. The establishment of Hemophilia Treatment Centers in four key cities in Luzon, Visayas and Mindanao may ease the suffering of patients as HTC doctors and nurses are trained to handle persons with bleeding disorders.
Of course, the filing of the bill is only the start of the struggle. But it is a good start and I admire Sen. Poe for heeding the pleas of the Hemophilia community.
(For more about von Willebrand Disease, visit fortheloveofstar.com)