Advances in treatments show life doesn’t wait, and neither should we

When I was in high school, I wasn’t just excused from gym class; I was prohibited from participating in every sport except swimming.

While my classmates learned volleyball, basketball, and track, I sat on the sidelines because my bleeding disorders made physical activity too risky. At the time, I accepted it as normal. Looking back, I realize I missed more than gym class. I missed the confidence that comes from simply being allowed to participate.

That memory came rushing back during a recent Zoom interview with Michael Dunn, vice president and head of the rare disease portfolio at Genentech, about the company’s “Life Doesn’t Wait” campaign for people with hemophilia A. I sit just outside the frame of this one as I live with hemophilia B and von Willebrand disease.

For many people with hemophilia A, that shift in thinking has been made possible by Hemlibra (emicizumab-KXWH). Since its approval in 2018, the treatment has revolutionized care by changing prophylaxis from frequent intravenous infusions to a simple subcutaneous injection schedule. For countless individuals and families, it has meant spending less time planning around treatment and worrying about the next bleed, and more time focusing on school, careers, sports, travel, and everyday life.

It’s hard not to notice when that kind of progress happens next door. The hemophilia B community can get a little jealous, and I told Dunn as much during our interview.

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Progress makes me hopeful

But instead of making me resentful, it makes me hopeful. It shows what’s possible when research, innovation, and patient advocacy come together. My hope is that people with hemophilia B, von Willebrand disease, and other bleeding disorders will continue to see the same kind of transformative progress in the years ahead.

Dunn said the conversation about hemophilia has evolved from “How do I prevent my next bleed?” to “What do I want to do today? Where do I want to travel? What goals do I want to pursue?”

That’s exactly what advances in treatment should accomplish. They shouldn’t simply reduce bleeding. They should give people the confidence to think beyond their diagnosis. For me, that’s what this conversation is really about. It’s not about one medication or diagnosis, it’s about what becomes possible when bleeding disorders stop dictating every decision.

Children who once might have been discouraged from participating in sports are growing up with opportunities many of us never imagined. Adults are planning careers, vacations, and family activities with a confidence that would have seemed impossible when I was younger.

Sometimes I wonder what my own childhood would have looked like if today’s treatments existed when I was growing up. Would I have been allowed to play sports? Would I have discovered an activity I loved instead of watching from the sidelines? I’ll never know. But I do know that every child who is given those opportunities today gains something much bigger than athletic ability. They gain confidence, independence, and the chance to define themselves by more than their bleeding disorder.

There is no single hemophilia journey

One point Dunn made that especially resonated with me was that the company’s campaign is built around real people because there is no single hemophilia journey.

As someone who works in the bleeding disorders community, I know our experiences vary tremendously. Women continue to fight for recognition and accurate diagnosis. People with hemophilia B have benefited from important treatment advances, like gene therapy, but we don’t yet have the same breadth of options that have transformed life for many people with hemophilia A. And individuals with rare bleeding disorders still face significant challenges.

Yet we all share something in common. We all want the freedom to plan our lives around our dreams instead of our diagnoses.

I left the conversation grateful — for Dunn’s time, for a company willing to listen, and for the reminder that hope travels across diagnoses. The treatments may not be mine. Not yet. But the message is. Life doesn’t wait, and neither should any of us.

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.