Pass Senate Bill 1335 (Bleeding Disorder Standards of Care)
0 have signed. Let’s get to 1,000!
(EXPLANATORY NOTE OF SB 1335 FILED BY SEN. JOEL J. VILLANUEVA ON FEB. 17, 2017)
In the Philippines, about one million Filipinos are affected by Hemophilia, von Willebrand Disease and other bleeding disorders. However, only around 1,500 have been registered with the Philippine Hemophilia Foundation. There is also an obvious lack of awareness and understanding on this group of medical conditions.
Bleeding disorder is a genetic condition where the blood does not clot properly. It is 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.
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 most known of this group of medical conditions is Hemophilia, classified as Hemophilia A (Factor VIII deficiency) and Hemophilia B (Factor IX deficiency), which occurs mostly in males. But the most prevalent is von Willebrand Disease (deficiency in von Willebrand factor), which affects around 1 percent of the population – both males and females. Other factor deficiency disorders are: I, II, V, VII, X, XI, XIII. (Source: World Federation of Hemophilia)
Bleeding disorders like Hemophilia, von Willebrand Disease and other factor deficiencies are usually inherited and genetic. Thus, there may be multiple members in a family affected by the condition and they will have it for life. There is no known cure yet for bleeding disorders.
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 very 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 cryo-precipitate, 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.
The cost of treatment is very high, and therefore, inaccessible to majority of Filipino patients. Many of them suffer with chronic pain and deformities in the joints because of lack of access to proper treatment. Availability of factor concentrates in the country is also inconsistent.
Other countries like India and Malaysia give free treatment to their citizens who have bleeding disorders. This bill seeks to provide medical and financial support to patients affected with this condition.
The immediate passage of this bill is earnestly sought.
Today: Hemophilia Advocates is counting on you
Hemophilia Advocates needs your help with “Senate of the Philippines: Pass Bleeding Disorders Bill (SB 1335) Now!”. Join Hemophilia Advocates and 734 supporters today.