Hemophiliacs push bleeding disorders bill

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Hemophilia patients have urged the Senate to pass a measure that will grant treatment fund for about million Filipinos affected with bleeding disorders.

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Many of those who suffer from bleeding disorders cannot afford treatment and are appealing to have the bill filed by Senator Joel Villanueva to be passed.

At least four died in the past few months including a four-year-old boy in Cagayan De Oro from lack of access of treatment, said Andrea Trinidad-Echavez, president of Hemophilia Advocates-Philippines.

Bleeding disorders occur when one of the 13 factors in blood is missing.

Based on the data from World Federation of Hemophilia (WFH), one in ten thousand has hemophilia. Hemophilia is one of the bleeding disorders that hinders normal blood clotting.

“There is no cure yet for bleeding disorders,” Echavez said.

However, bleeding can be managed either by blood transfusion or infusion of the medicines called anti-hemophilic factor concentrates.

Transfusion is not ideal because of the possible infections in blood stored for transfusion while concentrates infused in the body are “imported and very costly,” said Echaez.

She said thousands suffer from bleeding disorders who cannot afford treatment.

Philippines rely to two organizations, WFH based in Canada and Project SHARE, a US-based humanitarian organization, for donations.

“We are grateful to these two organizations but donations are not sustainable as they also help so many other countries,” said Echavez.

Meanwhile, many governments provide free treatment to hemophilia patients including India and Malaysia.

Senate Bill No. 1335 or the “Bleeding Disorder Standards of Care Act of 2017” filed on February 17 by Villanueva aims to include the Philippines in the list of governments providing government-funded treatment to bleeding disorders patients.

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