A party-list pro-life legislator on Thursday called on fellow lawmakers to pass a bill that provides benefits for those afflicted with bleeding disorders.
CIBAC Rep. Eddie Villanueva, a Christian pastor, appealed to Congress to immediately pass legislative measures which seek to provide and institutionalize standards of care for the treatment of persons with bleeding disorders.
He made the call amid the observance of World Hemophilia Day last April 17.
“In celebration of World Hemophilia Day, we call on our distinguished colleagues in Congress to pass the Bleeding Disorders Care bill which provide not only standards of care for Filipinos suffering from hemophilia but also crucial tangible government support like funding and treatment facilities. This is the most fitting and opportune gift we can give them,” Villanueva said.
April 17 of every year is recognized as World Hemophilia Day to increase global awareness of hemophilia, von Willebrand disease, and other bleeding disorders which are genetically-transmitted and have no discovered cure yet.
The 2020 World Federation of Hemophilia Report, said there were some 1,600 hemophilia victims in the Philippines. However, due to lack of awareness and understanding of the disease, it is estimated that real prevalence was at 10,000 Filipinos inflicted with haemophilia, while around one million suffered from von Willebrand disease and other bleeding disorders.
Bleeding disorders are treated by replacing the missing or deficient factors in the blood either through blood products or by manufactured plasma-derived factor concentrates and recombinant (genetically engineered) factor concentrates.
However, treatment cost 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.
Villanueva authored House Bill 5780 or the Bleeding Disorders Standards of Care bill, which, along with other similar bills, seeks to make treatment of bleeding disorders accessible, affordable, effective and government-assisted in order to veer away from being largely at the mercy of private sector donors.
Among its salient points, HB 5780 aims the establishment of treatment facilities in key cities and regions nationwide, which shall provide the necessary blood clotting products and ancillary infusion equipment free of charge. It also mandates that government funding necessary for its implementation be included in annual General Appropriations Act.
Senate Majority Leader Joel Villanueva filed its counterpart Senate Bill 744 in the upper chamber.