Press Release / Human Rights

Establish a "Standard of Care" for Treatment of Bleeding Disorders

 

Senator Joel Villanueva has filed a measure seeking to provide a "standard of care" for treatment of persons suffering from bleeding disorders.

Villanueva filed Senate Bill No. 1335 or the "Bleeding Disorder Standards of Care Act of 2017" after receiving reports that several patients with hemophilia, a type of medical condition where the blood does not clot properly, died in 2016 because of lack of treatment.

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 ofHemophilia. 

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.

Last November, 19-year-old Renz Villalobos died in an emergency room of a government hospital in Manila, a few hours after he was brought by his mother due to a bleed in the iliopsoas muscle.

“The mother told us that doctors in the ER did not pay attention, apparently because they did not understand the urgency of attending to ahemophilia patient,” 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 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. 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.