The privilege of choice in the treatment of hemophilia

When I was diagnosed with hemophilia B and von Willebrand disease as a child, there were no choices in terms of treatment strategy. Treatment for me came in the form of intravenous blood products administered only in the hospital. Fast-forward to today, and I’m fortunate to have options and the ability to choose what works best for me.

Over the years, the treatment landscape for bleeding disorders has transformed in ways I never could’ve imagined. We’ve moved from infusions of plasma-derived products in the hospital to self-administered recombinant therapies and now to long-acting treatments, subcutaneous injections, rebalancing agents, and even gene therapy. For many, managing a bleeding disorder no longer means planning life around infusions, but rather having the flexibility to exercise, travel, work, and live more freely. These advances haven’t just changed how we treat hemophilia; they’ve changed how we live with it.

Today, I feel a sense of agency over my own care, something I never experienced as a child. One of the biggest turning points came when I learned to self-infuse, which was a game changer. For the first time, I wasn’t dependent on a hospital or someone else’s schedule. I treat myself on my own terms, when I need to. For many of us, these choices restore a sense of control over a disorder that can feel anything but predictable. They allow us to tailor our treatment — not just to our condition, but also to our lives.

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The pressure of choice

With empowerment also comes pressure. Having options is a gift, but it can also be overwhelming. Deciding between different products, regimens, and delivery methods isn’t always straightforward. Each choice carries its own set of benefits, risks, side effects, and unknowns. As someone with both hemophilia B and von Willebrand disease, decision making is even more complex.

When I decide to infuse my medications, I sometimes find myself second-guessing. Did I make the right choice? Should I have waited? Should I have tried something else? It’s a lot to navigate, especially when the stakes feel high and symptoms are unclear. That’s why access to knowledgeable healthcare providers and honest, collaborative conversations are so critical. We need support not only to access treatments, but also to truly understand them and feel confident in the decisions we make.

While I’m grateful for the choices available to me, I’m acutely aware that not everyone in our community shares this experience. Access to treatment remains unbalanced, especially for women, people who live in rural areas, those without adequate health insurance, and folks in other countries who live without even basic care.

I’ve met people who are still being told they can’t have hemophilia because they’re women or they’re people stuck on outdated treatment protocols because their insurance won’t cover newer options. The ability to choose a treatment that works for your body and your life shouldn’t be reserved for a lucky few; it should be the standard.

Additionally, for those with von Willebrand disease, the treatment landscape remains limited. My own von Willebrand disease treatment hasn’t changed in over 20 years. While therapies for hemophilia have rapidly advanced, options for von Willebrand disease remain relatively few and are often less effective for certain subtypes. Many people with von Willebrand disease, especially women, still face delays in diagnosis, lack of access to specialized care, and limited treatment choices. It’s a stark reminder that not all bleeding disorders receive equal attention when it comes to research, innovation, and care.

We have to keep pushing until everyone in the bleeding disorders community, regardless of gender, geography, or income, has the freedom to choose the care that’s right for them. In the end, true progress isn’t just about what’s possible; it’s about making what’s possible accessible to all.

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.