Hemophilia patients and their families called on legislators to pass immediately a law granting them government-funded treatment, highlighting the urgency of the bill which Senator Joel Villanueva filed at the Senate last week.

President of Hemophilia Advocates-Philippines, Andrea Trinidad-Echavez, said thousands of patients have long been suffering and at least four have died in the past few months due to lack of access to treatment.

“Two patients died in a government hospital in Manila late last year, one at the ER and the other, at the ICU after a month of confinement. Another one died in the Visayas. Just last month, a four-year-old boy died in Cagayan de Oro, supposedly from excessive gum bleeding and gastro-intestinal bleed,” said Echavez, who herself has von Willebrand Disease, a type of bleeding disorder.

She said her mother, Sofia Hernandez, died of bleeding in 1988 during a biopsy operation and her daughter, Star, inherited the disorder. Several members of her family had also been diagnosed with the disorder.

Hemophilia, von Willebrand Disease and rare factor deficiency disorders are a group of genetic conditions that affect the blood’s ability to clot normally. People with bleeding disorders lack a certain protein in the blood called factor. There are 13 factors in the blood and missing one results in a certain type of bleeding disorder.

“There is no cure yet for bleeding disorders. But our bleeding can be managed either by blood transfusion or infusion of medicines called anti-hemophilic factor concentrates. Blood products are not very ideal because of the possibility of infections. On the other hand, anti-hemophilic factor concentrates are imported and are very costly,” said Echavez.

She said hemophilia organizations in the Philippines rely on donations from the World Federation of Hemophilia (WFH) based in Canada and Project SHARE, a US-based humanitarian organization.

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

She said that other countries already provide free treatment to hemophilia patients, among them India and Malaysia.

Villanueva filed Senate Bill No. 1335 or the “Bleeding Disorder Standards of Care Act of 2017” last February 17.

According to WFH, hemophilia occurs in 1 in 10,000 births while von Willebrand Disease affects about 1 percent of the population.

“This means, about a million Filipinos are affected by a certain type of bleeding disorder and majority of them may not even be aware they have it,” Echavez said.

Only a little more than 1,500 Filipinos with bleeding disorders have so far been identified.

Bleeding disorders affect both males and females although hemophilia, where the missing factor is either Factor 8 or Factor 9, mostly occurs in males. Hemophilia is the more severe type among bleeding disorders and internal bleeding, such as brain bleed or gastro-intestinal bleed, can happen spontaneously.

However, bleeding disorders in women can also be challenging because it can cause heavy menstruation that could last weeks or even years.

Likewise, the Department of Health cited post-partum hemorrhage as the No. 2 cause of maternal deaths. Because of this, the Philippines did not meet the Millennium Development Goal on maternal health.

Source:
courtesy of MANILA BULLETIN

by Philippine News Agency

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