Hemophilia in the Philippines

The past few days had been depressing for me. I went to the Visayas over the weekend with Project Share founder Laurie Kelley, volunteer Rose Noyes and Columban priest Fr. Don Kill to visit hemophiliacs.

Project Share is a US-based humanitarian organization that has been sending factors to over 40 developing countries including the Philippines.

Laurie and Rose came to country for a fact-finding mission and meet Filipino hemophiliacs her organization has been helping these past few years. Thanks to Fr. Don, the amiable "lolo" of hemophiliacs, we met more than a hundred sufferers and their families and saw up close the plight of hemophiliacs in the country.

The more I got involved in this advocacy, the more I feel so blessed and the more I believe something has to be done. Only few days before Laurie and Rose came, one young man named Warren died of bleeding at PGH (Phil. General Hospital). Another boy died at UST. All because they did not get the treatment they needed on time.

Every day since I learned of his death, I think about Warren. He died because the Bureau of Customs refused to release the factors he needed for his treatment due to a very minor technicality. And this s*@&!d technicality caused Warren's life! The little boy at UST died because his family was so poor they couldn't afford to buy the factors needed to stop his bleeding.

Sometimes I struggle when I hear of situations like this. A few months ago, when we rushed Star to the hospital due to profuse nosebleeding, there was a boy at Cardinal Santos who needed 1,000 iu's of factor VIII (4 vials at about P4,300 each). The child's caregivers (he was an orphan) could only afford to buy 3 vials. The following day, he died. It was way too late when he got the transfusion. I felt so bad when I learned of the boy's death. We had six vials (about 1,500 iu's) of the same factor that time because Star's nosebleeding stopped and her hematologist thought it was better to save the factors in case of emergency. Factors are not only expensive, they are also difficult to buy here in the Philippines.

Star is, by far, so blessed than the majority of the sufferers in the Philippines. We are probably among the 5 percent of sufferers who have the capacity to buy factors when we need it. Not that we have lots of money. Truth to tell, there are times that finances are hard to get by but God always provides.

In the past few days of going around, visiting and interviewing hemophiliacs, stories of how parents helplessly witness their child suffer are not uncommon. In fact, last Saturday while we were in Dumaguete, we witnessed a young boy crying in pain because of bleeding in his shoulder. His mother could do nothing but cry along as she hugged her son. When I volunteered to help her bring her son to the hospital, she just stared at me and said, "But we don't have money."

It was a gripping reality that reflected the plight of majority of Filipino bleeders. Another mother, Manang Rita, narrated to me in cracked voice how four of her five boys died one after the other because of hemophilia. Only the youngest, Jeff, who is the only one left of her boys, was properly diagnosed of hemophilia. But Manang Rita said there was no doubt all her four boys who had the same symptoms as Jeff, all died of untreated hemophilia.

Yesterday, Laurie, Father Don and I visited the grave of Jeff's four brothers in Tanjay, about an hour drive from Dumaguete. Laurie took pictures of the grave, an "apartment-type" tomb with faded white paint.

As we were driving back to Dumaguete, I thought of Manang Rita and the pain she had to endure. While we lost our mother to an undiagnosed von Willebrand disease, Manang Rita's pain was four times over. No wonder she is moving heavens to keep Jeff alive.

Photos: (top) One-year-old Christian Ramos, a hemophiliac from Danao City, carried by his mother. We chanced upon Christian at the Sotto Memorial Hospital in Cebu. He had been bleeding for a day but his parents didn't have money to buy factors. Thankfully, Laurie had a factor in her bag and immediately infused it on Christian. In a few seconds, the bleeding stopped.

Second photo shows our team with the members of Hemophilia Association of the Philippines-Cebu (HAP-C), including my nephew Yan-yan (in wheel chair). Yan-yan is the son of my first degree cousin, Daday.