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In a season of innovation and ongoing change, the anniversary offers the perfect time to reflect on how and why the organization began, she said. Founders Robert and Betty Jane Henry were looking for medical expertise for their son, Lee. They also were looking for blood donors, as treatment back then for those with hemophilia consisted of blood transfusions. They knew that there must be other families like theirs – including both blood and bleeding disorders – and they banded together for advocacy and support.
“As we have progressed forward – in hemophilia specifically – there have been transformational changes in medicine and in how people are cared for through our hemophilia treatment centers and our comprehensive model of care. That didn’t exist back when the organization was founded. We’ve been very specific about expanding beyond hemophilia to other blood and bleeding disorders, and we’ve just evolved so much as an organization.” NHF provides education and training for people living with bleeding and blood disorders, in addition to providing training and education for healthcare providers (specifically hematologists, nurses, physical therapists and social workers). There are 53 chapters that receive in-depth training and support; there’s accredited education for those healthcare providers; there’s a public policy and access team; and there are relationships in the payer space with insurers. Overall, she said, it’s a “multi-pronged approach,” and increasingly works in the areas of research and health equity.
Rotellini, who has worked with NHF for 15 years but been involved for 25 years overall as the parent of a son with hemophilia, said her family felt isolated and alone before connecting with the organization. She lived in Montana, and the nearest HTC was in Colorado; NHF and its chapters became a lifeline for Rotellini, helping her create a community in Montana and Wyoming. “I was able to connect with other families,” she said. “Literally, it was a selfish move. I just needed to talk to another family, another mom, who could tell me it was going to be OK. Community is huge.”
In the meantime, Randy Curtis was traveling his own journey with NHF. Diagnosed with hemophilia as an infant, he was “raised in chapter land.” His parents started a chapter in the 1960s, and when he was 10, they were holding board meetings in the family kitchen.
Curtis went on to earn a degree in genetics and an MBA, and worked in public health. He also cofounded the Hematology Utilization Group Studies (HUGS), which became the largest cost of care and burden of illness studies in the U.S. He’s been attending NHF meetings since 1985, and in addition to joining virtually every committee and initiative he’s been asked to join, has worked to standardize data collection. Looking back over the years, the evolution and presentation of research stands out – especially after the AIDS crisis of the 1980s. In the early 1990s, NHF and the American Society of Hematology (ASH) became “the place where science was presented.” NHF has continued to build on that foundation, most recently with the National Research Blueprint.
“If you’re not in the mix, if you’re not a voice at the table and involved in the design of clinical trials and this science that goes forward, then the science sometime misses the mark,” he said. “I’ll continue to support NHF. I’m a big fan.” ■