On World Hemophilia Day, CIBAC Party-List Representative Bro. Eddie Villanueva urges Congress to enact legislation that establishes and institutionalizes standards of care for individuals with bleeding disorders.

“In celebration of World Hemophilia Day, we call on our distinguished colleagues in Congress to pass the bleeding disorders care bills which provide not only standards of care for Filipinos suffering from bleeding disorders but also crucial tangible government support like funding and treatment facilities. This is the most fitting and opportune gift we can give them,” says the CIBAC solon.

April 17 is designated as World Hemophilia Day to raise global awareness about hemophilia, von Willebrand disease, and other genetically-transmitted bleeding disorders that currently have no known cure.

Based on a 2020 report from the World Federation of Hemophilia, there were around 1,600 registered hemophilia patients in the country. However, due to insufficient awareness and understanding of the disease, it is estimated that the actual prevalence may be as high as 10,000 Filipinos affected by hemophilia, with approximately 1 million individuals suffering from von Willebrand disease and other bleeding disorders.

Bleeding disorders are treated by replacing the missing or deficient blood factors using either blood products or manufactured plasma-derived and recombinant (genetically engineered) factor concentrates. However, the high cost of treatment renders it inaccessible to the majority of Filipino patients. Consequently, many endure chronic pain and joint deformities due to inadequate access to proper care. Moreover, the availability of factor concentrates in the country is inconsistent.

CIBAC Representative Villanueva authored House Bill 5780, also known as the Bleeding Disorders Standards of Care Bill. This bill, along with similar legislative initiatives, aims to make the treatment of bleeding disorders in the country accessible, affordable, effective, and government-supported. The goal is to reduce reliance on private sector donors and ensure sustainable access to care for those with bleeding disorders.

One of the key provisions of HB 5780 is to establish treatment facilities in strategic cities and regions across the country. These facilities will offer essential blood clotting products and ancillary infusion equipment at no cost to patients.

The bill also mandates that the required funding for its implementation be included in the Annual General Appropriations Act to ensure continuous support for the program.

Senate Majority Leader Joel Villanueva filed its counterpart Senate Bill 744 in the Senate.

Moreover, CIBAC Representative Bro. Eddie Villanueva recognizes and commends the efforts of private groups like Hemophilia Advocates Philippines, which work tirelessly to support patients afflicted with bleeding disorders, helping them survive and manage their lives despite the challenges posed by these life-threatening conditions.

“Together, we will endeavor to make equitable access to treatment of bleeding disorders a reality in our beloved country, the Philippines,” the CIBAC solon concluded.