Medicine Cabinet
Reiner W. Gloor
WORLD HEMOPHILIA DAY is celebrated worldwide every April 17 including here in the Philippines. The event is usually led by the Department of Health, along with other organizations focused on this disease such as the Philippine Hemophilia Foundation backed by Novo Nordisk Philippines, the Hemophilia Association of the Philippines for Love & Service (HAPLOS), and the Philippine Society of Hematology and Blood Transfusion.
Hemophilia, Von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent proper blood clotting. Those suffering from these disorders have lower clotting factor levels of blood plasma or impaired activity of the coagulation factors needed for a normal clotting process. So when a blood vessel is injured, a temporary scab may form, but the missing coagulation factors prevent fibrin from forming which is necessary to continue the clotting of blood. A hemophiliac does not bleed more intensely than a normal person, however they can bleed for a longer amount of time. Those with severe hemophilia can bleed from a minor injury for days or even weeks, which can result in blood loss or never even healing completely. If an injury is in an area such as the brain or inside joints, hemophilia can be fatal or permanently debilitating.
Von Willebrand disease is also a common coagulation abnormality. It is hereditary but may also be the result of other medical conditions. This disease arises from a qualitative or quantitavie deficiency of the Von Willebrand factor, a multimeric protein that is required for platelet adhesion. Those with Von Willebrand disease have a tendency to bleed — usually in the form of easy bruising, nosebleeds and bleeding gums. Women may also experience very heavy menstrual periods. However internal or joint bleeding is uncommon.
The World Hemophilia Federation estimates that about 10,000 Filipinos have hemophilia, with about 1 million suffering from Von Willebrand disease and other bleeding disorders. However, at this point only around 1,200 hemophiliacs have been identified. Hemophilia and Von Willebrand are serious and lifelong conditions that many people are not yet aware of. It is estimated that about 75% of sufferers receive inadequate to no treatment at all.
Both the global and local celebrations of Hemophilia Day aim to bring focus on these little known conditions. It is an opportunity for all concerned groups to unite for efforts to combat the burden of these diseases.
Around this time last year, HAPLOS called on the Philippine Health Insurance Corp. (PhilHealth) to help Filipino hemophiliacs cope with their disease. It is expensive to receive continuous treatment and they would like for PhilHealth to increase its existing coverage to sufferers. Currently, PhilHealth shoulders P2,000 per treatment session, but each session can cost twice that amount or even more.
Two years ago, Senator Grace Poe filed Senate Bill No. 2343 which aimed to assist persons with hemophilia and other bleeding disorders through the establishment of four treatment centers in Metro Manila, Luzon, Visayas and Mindanao. The bill also sought to provide funds for these centers and would have been a welcome relief to hemophiliacs nationwide. However, the bill is still pending in committee and seems to not have progressed since 2014.
It is important not just to educate the public but also to provide our current health centers nationwide with their requirements to properly address these blood diseases. It is our hope that with the current efforts of all concerned parties, more people will not only get to know about diseases like hemophilia but also get the treatments they need, where they are.
Log on to www.phap.org.ph and www.phapcares.org.ph. E-mail the author at reiner.gloor@gmail.com.
