Celebrating hemophilia progress while remembering our community’s past
The HFA Symposium was a reminder to honor those who came before us
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I just returned from the Hemophilia Federation of America (HFA) Symposium in New Orleans, and like many gatherings in the bleeding disorders community, it left me inspired, reflective, and deeply grateful.
This was my first HFA Symposium, and I’m truly grateful to the organization for including me. There’s something powerful about being surrounded by people who understand this life without explanation. Conversations happen quickly and deeply. You don’t have to start at the beginning. Everyone just gets it.
That sense of connection is what brings many of us back to these events year after year. But this time, something else stayed with me just as strongly: the weight of our shared history.
‘Lest we forget’
The foundation is rooted in a simple but powerful idea: “Lest we forget.” It’s more than a phrase — it’s a responsibility.
The HFA’s motto reads: “We in the bleeding disorders community have a moral responsibility and obligation to educate our legacies and the community at large about our history. That history included pain, suffering, and struggle as we fought for blood safety, while seeking safe, effective clotting products.” That reality was brought into sharp focus during the remembrance ceremony.
Photos and names filled the screen — individuals with hemophilia who were lost to HIV and hepatitis during the “tainted blood” era. Each name represented a life, a family, a story. And for many of us, those names were not abstract. They were people we knew.
As I sat there, I recognized several faces from my time at Camp Heartland, a summer camp for children affected by HIV/AIDS. Those people were part of this community, lived it, and are no longer here. Sitting in that room, hearing quiet voices around me say, “Oh, I remember him,” I was reminded just how personal this history still is.
It’s easy, especially as treatments improve and new therapies emerge, to focus only on progress. And we should celebrate that progress. But we cannot separate where we are from how we got here.
“Lest we forget” is not about looking backward for the sake of it. It’s about honoring those who came before us and ensuring that the lessons they taught us are never lost.
We still have work to do
In between sessions, I found myself in conversation after conversation with women and families still struggling to be heard, to be diagnosed, or to receive appropriate care. These weren’t new stories, but they felt more urgent.
We are making progress. Awareness is growing. More voices are being included. And yet, gaps remain, especially for women and those without clear or immediate diagnoses.
If I could add one thing to future events like this, it would be a stronger focus on practical self-advocacy. How do you respond when a doctor dismisses your symptoms? What do you say when you know something is wrong, but you don’t yet have the clinical language to explain it? How do you persist without burning out? These are everyday challenges for many in this community.
A session, or series of sessions, focused on being heard, navigating the healthcare system, and bridging lived experience with clinical care could make a meaningful difference. Bringing clinicians and community voices together in those conversations would make them even more impactful.
Leaving the symposium, I felt grateful for the connections, the conversations, and the reminder that none of us is alone.
But I also left with something deeper: a responsibility to remember those we have lost. To tell their stories, and to ensure that “Lest we forget” is not just something we say, but something we live.
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.
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