Senator Joel Villanueva today reiterated his call for the passage of a measure seeking to provide a "standard of care" for treatment of persons suffering from bleeding disorders.
Villanueva authored Senate Bill No. 1335 or the "Bleeding Disorder Standards of Care Act" citing cases of patients who died for lack of proper treatment.
"Tamang pag-aalaga, libreng gamutan at sapat na impormasyon tungkol sa sakit na ito, magiging normal po ang buhay ng ating mga kababayang may bleeding disorder,” Villanueva said during the Senate committee on health hearing on Wednesday.
"Let’s give hope to Filipinos with hemophilia and other bleeding disorders by giving them access to care and free and equal treatment that they truly deserve,” the senator added.
Bleeding disorder is a genetic condition caused by deficiency of proteins in the blood called clotting factors. There are 13 factors in the blood, and when one of it is missing or is deficient, it results in a bleeding disorder.
The most known bleeding disorder is hemophilia, which was said to affect several members of the royal family in Europe starting from Queen Victoria. It involves deficiency in either Factor VIII or Factor IX of the blood.
Other bleeding disorders are von Willebrand Disease, involving the deficiency in the blood's von Willebrand factor, and rare factor deficiency disorders involving the lack of Factors I, II, V, VII, X, XI and XIII.
Von Willebrand Disease, the most common bleeding disorder, affects around 1 percent of the population, according to the World Federation of Hemophilia.
However, only around 30 have been registered with the Philippine Hemophilia Foundation. Hemophilia, on the other hand, registered around 1,500 cases.
"There is an obvious lack of awareness and understanding on this group of medical conditions," Villanueva said.
People with bleeding disorders can bleed for longer than normal, and some may experience spontaneous bleeding into joints, muscles, or other parts of their bodies. Women with bleeding disorders may experience menorrhagia (excessive menstruation) and post-partum hemorrhage, on top of other bleeding problems.
The World Health Organization and the Department of Health cited post-partum hemorrhage as one of the top causes of maternal deaths. Incidentally, the Philippines did not meet the Millennium Development Goal on maternal health. It is possible that a big percentage of those mothers who died of post-partum hemorrhage had undiagnosed bleeding disorders.
Bleeding disorders are treated by replacing the missing or deficient factors either through blood products such as cryoprecipitate, cryo-supernate, fresh frozen plasma, packed red blood cells (RBC) and whole blood or by manufactured plasma-derived factor concentrates and recombinant (genetically engineered) factor concentrates.
Villanueva stressed that the best support for people with bleeding disorders in the Philippines is establishing hemophilia state treatment facilities all over the country, ensuring standard care, and providing adequate funding for hemophilia patients.
"The cost of treatment is very high, and therefore, inaccessible to majority of Filipino patients. Through this measure, we can help ease their suffering by providing adequate treatment of bleeding disorders at lowest possible cost and provide free treatment for indigent patients, Villanueva said.
In countries such as India and Malaysia, citizens with bleeding disorders are given free medical treatment.