Bridging generations to share information about hemophilia
Those who went through the tainted blood era have insights to pass forward
When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream.
Today, I meet children and young adults with hemophilia who’ve never known a time when factor wasn’t available, or when infusions couldn’t be done at home. Sometimes I feel like we come from two different planets — but the truth is, we’re part of the same story.
At the National Bleeding Disorders Foundation’s (NBDF) Bleeding Disorders Conference in Aurora, Colorado, one powerful session addressed the lasting impact of the tainted blood era. Titled “Let’s Still Talk About It: The Impact of HIV/AIDS and/or Hepatitis C on Our Lives,” it was led by Kathy Gerus-Darbison, widow of a man who had hemophilia and mother of a daughter who has two bleeding disorders. Gerus-Darbison, who was featured in the film “On the Shoulders of Giants” by Believe Limited, is a beloved advocate in the bleeding disorders and AIDS communities.
During the session, a father in the community reminded us that history often repeats itself. He stressed that the younger generation wants to learn our history, not be shielded from it. We agreed that next year’s conference should feature a panel where participants can ask older members questions directly. The moment reminded us that sharing the past is vital to building a safer, more informed future.
The older generation’s story
For many in the hemophilia community who grew up in the 1960s, ’70s, and ’80s, treatment was a roll of the dice. Factor was derived from pooled plasma, and no one knew the dangers lurking in the blood supply. An entire generation was devastated when HIV and hepatitis swept through the community during the tainted blood era. People lost family and friends. Many lived with the heavy burden of chronic illness layered on top of an already challenging condition.
Yet this generation, despite tragedy, showed extraordinary resilience. They built the advocacy structures we have today and insisted the blood supply must be safer for all. Without their perseverance, I can’t imagine where we would be.
One of those advocates is Wayne Cook, who contracted hepatitis C because of contaminated factor. A liver transplant recipient, Wayne told me, “We never imagined what would happen to us back then. But I fought to stay alive for my family and to make sure the next generation would never go through what we did.” His story is one of both heartbreak and courage. It’s a reminder of how much we owe to the survivors of that era.
For today’s kids with hemophilia, life looks radically different. Many learn to infuse at home at a young age. Some are on nonfactor therapies that prevent bleeds without intravenous needle sticks at all. Gene therapy, once science fiction, is now a real option for some adults. Parents no longer fear every scraped knee or playground accident the way families once did.
Still, it’s not all smooth sailing. Younger patients may not always appreciate the history that made their current opportunities possible. They face new challenges — insurance battles, high drug costs, and the emotional weight of living with a rare disorder that sets them apart from their peers. In many ways, their struggles are different, but no less real.
My own journey
I live somewhere in between these two worlds. I remember being dismissed by doctors, told I couldn’t possibly have hemophilia because I was a girl. Trips to the hospital meant long waits and uncertain outcomes. And I also see the promise of today. New medications make bleeds less frequent. Knowledge empowers women to be recognized as patients.
I now carry both gratitude and grief — gratitude for the progress, and grief for the friends and advocates we lost too soon. Standing in that space drives me to bridge generations and keep every story alive.
No matter when we were diagnosed — 50 years ago or last month — we belong to the same story. And together, we’re still writing it.
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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