Why we’ll keep pushing for better access to factor replacement therapy

Due to my husband Jared’s severe hemophilia B, we keep a small, personal supply of factor replacement therapy in our refrigerator that typically is enough to cover one bleeding emergency.

This isn’t a small detail for families like ours who live in the Philippines, where access to factor products can be limited. Another important detail here is where the factor actually comes from.

While some families purchase factor from suppliers, we’ve mostly had to rely on humanitarian aid. Over the years, we’ve gotten creative at finding factor through whatever means available to us. That isn’t quite the same as having reliable access to it.

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When having factor isn’t enough

The availability of factor products has improved in the Philippines in recent years, but it hasn’t progressed equally across all bleeding disorders. Hemophilia A is more common than hemophilia B, therefore, factor VIII is easier to find through the usual purchasing channels, in our experience. Jared needs factor IX, which can be much harder for us to buy.

So when I say there is factor in our refrigerator, I don’t mean that we can simply replace it whenever we want.

I also know that some people in our community are hesitant about talking openly about personal factor reserves. There’s a reasonable fear that if people see factor sitting in our refrigerators, they’ll assume that patients already have enough.

I understand that concern. But I think it exposes a problem with how narrowly we sometimes define access. We’ve become good at navigating scarcity, which shouldn’t be mistaken for having overcome that scarcity.

I’ve started thinking about factor the way I think about financial security. You can have money in the bank and still be financially vulnerable. Savings are a resource, but they aren’t an entire safety net. You also need systems that protect you when something expensive and unexpected happens.

Our factor supply feels similar. Every vial represents a finite number of units. Every infusion subtracts from that number, and we don’t necessarily know how easily we’ll be able to replace it.

That reality can affect how much Jared uses. He has often used smaller doses than we might ideally want available to him. Doctors here have sometimes suggested this, too — not because less treatment is somehow better, but because limited supply is a reality everyone has to work with.

I don’t say that to criticize Jared’s doctors. They’re navigating the same system we are. When resources are finite, everyone learns to stretch what is available.

Access should create freedom

One bleed can use up what we’ve worked to keep on hand. A more serious bleed, accident, surgery, or hospitalization could require far more. That’s why the question shouldn’t be whether there is factor in my refrigerator. It should be whether Jared’s healthcare becomes precarious when there isn’t.

To me, meaningful access means knowing that appropriate treatment exists within a healthcare system when a person needs it, with an appropriate amount determined by a medical team. It shouldn’t depend on how good a family has become at sourcing treatment through personal funds, humanitarian aid, or whatever happens to be available at the time.

I think we should aim even higher.

The goal of hemophilia care isn’t simply access to medication. It’s access to the life that medication is supposed to make possible.

Jared and I, both in our early 30s, are still young enough to think about enjoying life to the fullest. We want to travel, raise our daughter, build careers, and make plans that stretch years into the future. But we’re also old enough to know that aging isn’t that far on the horizon.

I don’t want Jared to unnecessarily limit what he does with his body now because we’re afraid of using factor. But I also don’t want the conservation of factor today to come at the expense of his health and mobility later.

The refrigerator shouldn’t be the finish line

I don’t want to minimize what has changed here in recent years. Greater availability matters, and I’m grateful for every avenue that has helped families like ours obtain treatment. But progress should mean allowing our expectations to grow.

Seeing factor in a patient’s refrigerator shouldn’t lead us to conclude that the access problem has been solved. A personal supply can provide security, but it cannot replace a healthcare system that’s capable of providing reliable, appropriately dosed treatment when that supply isn’t enough.

A reserve is an asset. A functioning treatment system is infrastructure. We shouldn’t mistake one for the other.

Ultimately, I don’t want to measure hemophilia access by whether we can somehow find enough factor to keep in our refrigerator. I want to measure it by how little someone’s life has to shrink around the possibility of running out.

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 consult your physician or another qualified healthcare 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.