Hemophilia care in the Philippines: Stories from the provinces
There's a range of realities here for patients seeking access to treatment
When I traveled with HAPLOS, the Hemophilia Philippines Foundation, about six years ago to visit families with bleeding disorders in rural provinces, I expected hardship.
What I didn’t expect was how drastically the same diagnosis could play out depending on where and how you lived.
My husband, Jared, and I met three families on that trip. Each one told a different story of what it means to live with hemophilia in the Philippines — and how access, or the lack of it, can change everything.
A shanty and 2 sons
The first home we visited was little more than a box — a fragile shanty that barely sheltered the family inside. Two young sons were living with hemophilia. Their parents faced an impossible set of choices: the nearest hospital was miles away, and traveling to Metro Manila for factor treatment was financially out of reach.
Blood transfusions were their only option. That was the best they could do. Standing there, I was struck by how treatment in one setting could look so different from the textbook definitions I’d read about hemophilia care. For this family, it wasn’t about “quality of life.” It was about survival.
Behind closed doors
The second home was better furnished, but the atmosphere was heavy. A teenage boy with hemophilia lived there, but he refused to leave his room. He was severely depressed and his family wasn’t sure how to deal with it.
His physical health wasn’t the immediate issue — he had more support than the first family we saw. But the toll on his mental health was clear. Hemophilia isn’t just a condition of the blood. It can isolate, especially when resources are limited and the future feels uncertain.
A life with access
The last home we visited belonged to a family who lived a life familiar to many middle-class Filipinos — modest but steady. Their adult son, around Jared’s and my age, was thriving, thanks to having more consistent access to factor than most.
He was healthy, strong, and free from most physical impairments that so often mark years of untreated bleeds. His life leaned more toward the hemophilia narratives I’d read about in other countries — where treatment is reliable and the condition doesn’t have to dictate your entire path.
What hasn’t changed
It’s been six years since that trip, but truthfully, little has changed. Access to factor remains limited here. Government support for rare and lesser-known conditions is almost nonexistent.
Sometimes I hear people in first-world countries say that kids with hemophilia are “better off now.” And in some places, they are. But here in the Philippines, many families are still stuck in survival mode, making do with transfusions or facing long trips for inconsistent supplies of factor.
Even in our own home, this reality lingers in the background. Jared and I know that if our daughter ever wants children, hemophilia will be part of that conversation. Right now, at 6 years old, she’s not interested in relationships — something Jared is, in his dry way, a little relieved about. But we know that can change. And when it does, hemophilia will still be part of the equation.
That day with HAPLOS reminded me that hemophilia is not just a disease of the blood. It’s a mirror of inequality. One condition, three families — and three very different outcomes shaped not just by medicine, but by geography, income, and community ties.
Science may give us the tools. But here in the Philippines, it’s still a question of who actually gets to use them.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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