By Jullie Y. Daza
They live in glass bodies. A bump or injury is earnestly to be avoided, therefore no contact sports.
They are not even allowed to enjoy a massage. No contact, no rubbing, therefore no marriage? It’s a gamble, more so when the desire for children comes into the picture. As a genetic disorder, there’s always the danger of a son or sons contracting the disease and a daughter as potential carrier.
They are suffering from a congenital disease known as hemophilia (nothing to do with persons of royal blood), so rare that only 1,500 persons, mostly men and very rarely women, are formally registered with HAPLOS Community, an NGO born 25 years ago with a core of only 12 families. Their members today number 500, but it’s the same frustration as before, that while a 2008 presidential proclamation sets aside April as National Hemophilia Awareness Month, government, in particular DOH, is hardly aware of the disease, its costs and consequences.
Hemophilia is a bleeding disorder due to a deficiency in clotting. One unit of the artificial plasma costs anywhere between P15,000 and P25,000, with patients requiring the infusion three or more times a month. While an internal disorder, it shows up as bruising, swelling, prolonged nosebleeds, prolonged bleeding after a tooth extraction or other surgery. A child could have a bump as big as a santol on her little head, a man could find his arms shortened by muscle loss.
And yet hemophiliacs are not legally considered persons with disability unless they are wheelchair-bound.
The 1,500 identified by HAPLOS www.hemophiliaphilippines.org are not the only people with hemophilia in this country. At that number, would the ratio of one in every 65,000 of the population make it too rare a disease or not rare enough for DOH to take action? The number 1,500 is constant if deceptive, because “many of them could no longer be located or heard from.”
Dr. Flerida Hernandez, treasurer of HAPLOS, has three brothers with hemophilia, which makes her case even more rare than the incidence. Speaking for everyone with the disease, including those who don’t yet know that they have it, she added: “Our deepest concern is the delay in the action of PhilHealth” to improve coverage for bleeding disorders. Needed: a bleeding-heart to help the cause.