This is such a sad time for the Filipino bleeding disorders community. Yesterday morning, we lost another “blood brother” who succumbed to gastrointestinal (GI) bleed.
John Paul’s death came as a shock to all of us. He was the chair of Blood Brothers Aid and had not had any serious bleeds in the past year or so. JP was one of the passionate young men in our community. He was a reluctant leader, thrust only into the position because of his willingness to serve.
I had always admired JP for his passion. He was shy but always wore a sweet smile. Although he was a severe bleeder and needed crutches to go around most of the time, he would not miss meetings as long as he could still walk. He presided over the last board meeting where Blood Brothers invited me to talk about lobbying for a law on hemophilia care.
JP was one of those who believed that in our lifetime, Filipinos with bleeding disorders would be able to have some sense of normalcy of a non-bleeder — to be able to play basketball or soccer or even boxing, without the fear of a bleed.
Last year, several other “brothers” died, all because they were poor and could not afford to buy anti-hemophilic factors.
Bleeding disorders are such traitors. It is hard to understand why people still die of it in this modern time.
At the time of my mother death in the 80s, anti-hemophilic factors were not yet invented and blood products such as fresh frozen plasma or cryo precipitate, which can also be used to stop bleeding, were hard to get.
But today, with enough infusions of anti-hemophilic factors and other anti-hemophilic drugs, people with bleeding disorders (PWBDs) can lead normal lives. Why is it then that people still die of it?
Hemophilia and other bleeding disorders are rare genetic disorders. Meaning, the genes are defective since birth and therefore, cannot be cured. Factors are the tiny particles in our blood that enables coagulation or the process by which blood forms clots.
With defective factors, PWBDs bleed longer than others. In severe hemophilia cases, even a minor injury can result in blood loss lasting days or weeks, or even never healing completely. Bleeding in areas such as the brain, the intestine or the joints, can be fatal or permanently debilitating.
In other countries, governments provide free treatments to PWBDs. In some, patients are covered by the mandatory insurance (like in the US) and therefore, they have access to medicines.
But in the Philippines, the cost of treatment is not only prohibitive, it may not even be available. In the case of Star, every treatment costs at least P60,000. Now that she has started menstruating, we need to infuse her every time her menses go beyond 10 days. (Which has always been the case.) And to think that Star is not a severe bleeder. But the worse part is that, on some occasions, we can’t even find factors.
JP was probably not aware that he already had a gastrointestinal bleed. He still went to Quezon province over the weekend to attend a wedding of a relative. On Sunday, according to his sister, he thought of going straight to PGH when he could no longer bear the pain in his tummy.
At the ER, CBC was done and results showed he had low hemoglobin and so he was transfused with whole blood and fresh frozen plasma. His sister was able to get two vials of factors but treatment was not enough to stop the bleed. He expired Thursday morning, much to everyone’s shock.
Unfortunately, anti-hemophilic factors are not readily available in hospitals. Since it has to be acquired outside, families are burdened where to find resources in emergency situations. The death of JP is such a bitter pill to swallow. Deaths are always sad, especially when the patient could have been saved if only…. I pray JP will be the last.