Growing up before treatments for hemophilia were safe, part 3
For Lee Hall, survival came with a responsibility to advocate for the community
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Last in a series. Read parts one and two.
In the previous columns of this series, hemophilia awareness advocate Lee Hall shared his memories of a childhood shaped by hospitalizations and the painful reality of early hemophilia treatment, followed by the devastating era from the 1970s to the early 1990s, when contaminated blood products infected tens of thousands of patients with hepatitis and HIV.
Many of Hall’s friends didn’t survive those years. Hall, who was born in 1971 and diagnosed with hemophilia nine months later, felt that his own survival came with a responsibility to advocate for the bleeding disorders community.
As treatments improved and members of the community struggled to grasp what had happened, he became the executive director of the Alabama chapter of the National Hemophilia Foundation (now Hemophilia and Bleeding Disorders of Alabama) at age 17, the youngest person to fill that role in the organization’s history.
It wasn’t a role he pursued for recognition; it was born out of necessity. “Every day was finding out a friend had died,” he recalled.
Young people who had attended hemophilia camps together, shared hospital rooms, and grown up side by side were suddenly gone. Families who once gathered for educational meetings were now attending funerals. Advocacy work wasn’t abstract policy work — it was about personal survival.
From survivor to advocate
Hall and others in the community began traveling to Washington, D.C., to meet with lawmakers and push for reforms to make blood products safer. Screening methods, viral inactivation processes, and, eventually, recombinant therapies became a reality because patients and their families demanded change.
Looking back, Hall says progress didn’t happen automatically, but because patients refused to remain silent.
Treatment options also continued to evolve. For much of his life, Hall used factor only after bleeds had occurred. Preventive, or prophylactic, treatment wasn’t standard practice when he was growing up. By the time prophylaxis became common, Hall was already an adult with years of joint damage and chronic bleeding behind him. He didn’t begin regular preventive therapy until he was about 30 years old.
Today, treatment looks dramatically different from what it did back then. Infusions are faster, products are safer, and long-acting therapies have reduced treatment burden for many patients. Children born with hemophilia now often grow up without the constant hospitalizations Hall experienced.
Still, he reminds younger generations that progress should never be taken for granted. “If you don’t know your history, we will relive and repeat that history,” he cautioned.
For Hall, remembering the past isn’t about stoking fear or dwelling on loss, but rather protecting future patients and ensuring that safety standards remain strong. The work of advocacy never truly ends.
As our conversation wrapped up, I asked him what he hoped people would remember most about his story. “I was loved, and loving,” he said, “and I always wanted to make sure people in our community were heard.”
It struck me that this may be his greatest legacy. Beyond policy victories and advancement in treatment, and after surviving an era that took so many lives, Hall has spent decades making space for others by mentoring younger patients, supporting families, and reminding people that they’re not alone.
His story isn’t just about hemophilia; it’s about resilience, community, and the power of people who refuse to let tragedy define the future. Perhaps most importantly, it’s a reminder that the progress we see today was built by the courage of those who lived through the hardest years and chose to keep fighting.
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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