Many Filipinos with hemophilia can’t get treatment

MANILA, Philippines–Marvin Valladolid, 35, had to travel 14 hours from Sorsogon to have himself admitted to the Philippine Blood Center in Quezon City, after he vomited blood last week. Since childhood, Valladolid has experienced almost all kinds of bleeding.

Cyl Robert Arcilla, 14, endured a 24-hour trip with his mother Amor all the way from Catanduanes to have a checkup at the Philippine Children’s Medical Center also in Quezon City. Arcilla’s joints have been damaged after years of bleeding.

Valladolid and Arcilla are among thousands of Filipinos with hemophilia who have been suffering due to a lack of access to treatment.

Hemophilia is a group of rare and lifelong genetic disorders where a person’s blood lacks the ability to clot naturally. It usually affects joints and internal organs. Simple cuts, however, in persons with hemophilia could be fatal.

According to the World Hemophilia Federation, there could be some 10,000 Filipinos affected with hemophilia and around one million others with von Willebrand Disease and other clotting factor deficiency disorders.

Despite the numbers, just a little over 1,200 Filipinos have been diagnosed due to a lack of awareness by both doctors and patients of the symptoms of the disorders.

Still many of those who had been diagnosed are suffering because they cannot afford the high cost of treatment.

“A mild bleed in the joints can cost P30,000 to P50,000 per treatment. Severe bleeds like those in internal organs such as the gastrointestinal tract or the brain can cost hundreds of thousands, if not millions,” according to Ric Felipe, president of the Hemophilia Association of the Philippines for Love and Service (Haplos), the national organization of Filipinos with hemophilia.

Last Friday, the hemophilia community around the world celebrated World Hemophilia Day to raise public awareness to this still misunderstood group of bleeding disorders.

“We are appealing to our government to please look into the plight of persons with hemophilia,” Felipe said.

Last year, he said, at least five patients died because of inadequate treatment.

Patients with hemophilia are treated by giving them replacement factors of the component missing in their blood.

Factors are the protein in the blood that serve as a natural glue. There are 13 factors in the blood. When one is missing, this results in a bleeding disorder in the person.

Replacement factors are given through transfusion of blood products such as cryoprecipitate or fresh frozen plasma, which both contain the missing components in persons with hemophilia. There are also available factors in concentrated forms but these are very expensive.

Over the weekend, Health Undersecretary Vicente Belizario said the Department of Health (DOH) would push for the inclusion of hemophilia, von Willebrand Disease and inherited bleeding disorders in the Z Benefit Package offered to Philippine Health Insurance Corp. (PhilHealth) members.

The Z Benefit Package is aimed at addressing health conditions that trigger prolonged hospitalization and very expensive treatments.

Conditions under type Z, the farthest end of the spectrum, are cases “perceived as economically and medically catastrophic” due to their seriousness.

“After talking to some patients earlier today, I found out that the treatment for bleeding in hemophilia patients is very costly. We at DOH will work it out so that hemophilia and other bleeding disorders will be included in the Z Benefit Package,” Belizario said at a gathering of hemophilia patients at the Glorietta mall in Makati City on Saturday.

Aside from expanded PhilHealth benefits, Haplos is also pushing for the enactment of a hemophilia law that would designate certain government hospitals as hemophilia treatment centers, and the inclusion of hemophilia in the amended persons with disability law.

Hundreds of persons with hemophilia and other bleeding disorders joined the weekend gathering at Glorietta to commemorate World Hemophilia Day.

Dubbed “Count Me In,” the two-day activity was organized by Haplos and the Philippine Children’s Medical Center.–Andrea Trinidad Echavez, Contributor