HEMOPHILIA IS a bleeding disorder that affects the way blood normally clots.
It can cause abnormal bleeding both outside and inside the body. According to the World Federation of Hemophilia, the most common types of bleeding disorders are hemophilia and Von Willebrand Disease (VWD). Hemophilia is hereditary and affects approximately 1 in 10,000 people. People with hemophilia do not have enough clotting factor VIII or IX in their blood resulting in longer periods of bleeding. The VWD is a bleeding disorder caused by a hereditary deficiency or abnormality of the Von Willebrand Factor (VWF), which is a type of protein that helps blood platelets clump together. Low functioning levels of VWF disables platelets to clot properly and leads to prolonged bleeding.
If left untreated, uncontrolled bleeding may cause damage to joints, muscles, or internal organs and may be life-threatening. People should seek immediate medical care for serious symptoms, including heavy external bleeding, blood in the urine or stool, double vision, severe head or neck pain, repeated vomiting, difficulty walking, convulsions, or seizures. They should seek prompt medical care if they experience mild but unstoppable external bleeding or joint swelling and stiffness.
In the Philippines, approximately one million Filipinos have VWD or another type of bleeding disorder while around 10,000 Filipinos are hemophiliacs. As a result of lack of information and awareness, there are patients of bleeding disorders who died without receiving diagnosis or treatment.
The measure on the establishment of Hemophilia Treatment Centers (HTCs) all over the Philippines could save thousands of people suffering from bleeding disorders especially those living in far-flung areas, according to Hemophilia Advocates-Philippines. Andrea Trinidad-Echavez, president of Hemophilia Advocates-Philippines (HAP), said thousands of patients have long been suffering due to lack of access to treatment. At least five hemophiliacs from NCR, Bohol, and Surigao died in 2018 either because of the unavailability of medicines or lack of knowledge of medical practitioners in handling their condition. Echavez’s own mother bled to death in 1988 during a biopsy operation because doctors were unaware that bleeding disorders could also affect women. Echavez inherited the condition and passed it on to her youngest daughter, Star. Hemophilia, the most commonly known among these groups of disorders, is usually associated with males. It is also called the “royal disease” because it affected several members of the Royal Family in Europe, which started with Queen Victoria. There is no cure yet for bleeding disorders. But bleeding can be managed either by blood transfusion or infusion of the medicines called anti-hemophilic factor concentrates. Blood products are not very ideal because of the possibility of infections. On the other hand, anti-hemophilic factor concentrates are imported and are very costly.
Hemophilia organizations in the Philippines mainly rely on humanitarian donations from international organizations such as World Federation of Hemophilia (WFH) in Canada and Project SHARE in the United States. Many governments already provide free treatment to persons with bleeding disorders including India, Malaysia and Thailand.
Bleeding disorders affect both males and females although hemophilia, where the missing factor is either factor VIII or factor IX, mostly occur in males. Hemophilia is the more severe type of bleeding disorder and internal bleeding such as brain bleed or gastro-intestinal bleed can happen spontaneously. However, bleeding disorders in women can also be challenging because it can cause heavy menstruation that may last for weeks or even years.
Senator Nancy Binay’s Senate Bill No. 834 otherwise known as the “Bleeding Disorder Standards of Care Act of 2019” seeks to establish hemophilia treatment facilities nationwide for persons with bleeding disorders in designated hospitals with cancer and hematology departments to provide free of charge blood clotting products, room exclusivity for hemophilia patients, and clinical coagulation laboratories. She said this legislation will ensure the adequate treatment of hemophilia at the lowest possible cost and make them available for free to indigent patients who are unable to pay for services or medical treatment, blood laboratory testing and/or coagulation studies, or coagulating product and/or ancillary infusion equipment. It will also ensure the establishment of treatment centers in public hospitals; and establish a standard of care so that patients with severe bleeding disorders can receive appropriate medical care. Blood clotting products” are intravenously administered medicine manufactured from human plasma, recombinant biotechnology techniques and other processes, approved for distribution by the BFAD and which is used for the treatment and prevention of symptoms associated with bleeding disorders. Some products include factor VIIa, factors VIII and IX, Von Willebrand factor, prothrombin complex concentrates, and other products approved by the BFAD.
Binay added that the national government shall establish hemophilia treatment facilities in key cities and regions nationwide in designated hospitals with cancer and hematology departments. Each hemophilia treatment facilities shall provide: a) care by qualified hematologists and medical doctors and shall also provide free of charge the blood clotting products and ancillary infusion equipment; (b) room exclusively for hemophilia patients; and (c) clinical coagulation laboratory for screening, diagnosis, and treatment of bleeding disorders or suspected bleeding disorders and such services shall be provided free of charge to all indigent patients.
The amount necessary for the initial implementation if enacted into law shall be sourced from the current budget of the Department of Health (DOH). The treatment facilities are allowed to use five percent (5%) of the amount given to it for the maintenance of the rooms that will be used exclusively for hemophilia patients. However, ninety percent (90%) of the amount shall be used exclusively for blood clotting products and ancillary infusion equipment. The remaining five percent (5%) shall be used for blood screening.–