The National Bleeding Disorders Foundation (NBDF) has been celebrating its 75th anniversary in 2023. Throughout the year, HemAware.org has been commemorating this special milestone with articles that look back at notable programs, initiatives, and events in NBDF’s history.
The passage of the Ricky Ray Hemophilia Relief Fund Act in 1998 was a significant landmark for the inherited blood and bleeding disorders community.
The legislation, which provided compensation to people (and their families) who had acquired HIV from contaminated clotting factor products, had a record number of bipartisan co-sponsors, second only to the Civil Rights Act of 1964. The bill also passed and was fully funded in just six years. Meanwhile, it took more than four decades for Japanese Americans who were held in internment camps during World War II to receive compensation, and 18 years for the September 11 Victim Compensation Fund to become permanently funded.
Ellen Riker, a federal policy adviser for the NBDF since the late 1980s, says integral to the passage of the bill was the involvement of a united and dedicated group of individuals — people with hemophilia and their family members — who came to Washington, D.C., to meet with their elected officials and tell their stories to help move the legislation forward.
The impact and success of those meetings sparked the idea for Washington Days, NBDF’s annual gathering in Capitol Hill. The event brings together hundreds of people in the inherited blood and bleeding disorders community to discuss key issues affecting access to care, learn about advocacy, meet with elected officials, and help put a face on these disorders.
Key Legislative Wins for NBDF
“Washington Days came out of a tragic crisis in the inheritable blood and bleeding disorders community, but since that time, we can point to many other examples where the community has been just as engaged and has helped bring about meaningful and impactful changes,” Riker says.
One example is the community’s efforts around insurance reforms that were included in the Affordable Care Act that passed in 2010. “We took the lead in proposing the elimination of lifetime caps and limits on annual caps, and because of our efforts, these changes were included in a handful of private insurance reforms that took effect within six months of the passage of the Affordable Care Act,” Riker says.
More recently, patients and health care providers in the inheritable blood and bleeding disorders community were instrumental in passing the Hemophilia SNF Access Act in 2020, which enables people affected by bleeding disorders who receive Medicare benefits to get care at skilled nursing facilities (SNFs). Previously, Medicare’s reimbursement policy kept SNFs from caring for people with bleeding disorders due to the lack of adequate payment for treatments during a stay in an SNF.
“The advocacy involved in getting that bill passed was really a shared effort among both patients and providers,” Riker says. “The providers were frustrated because they had patients who were hospitalized post-surgery. They couldn’t send them home, but they also couldn’t qualify for a rehab hospital, and so there was nowhere for them to go.”
Riker believes the collaboration and mutual respect between patients and health care providers in the inheritable blood and bleeding disorders community have been key factors in their ability to bring about meaningful changes. “We told a story from a patient’s perspective and a provider’s perspective, but it was the same story,” she says.
The Washington Days Experience
Leading up to Washington Days, NBDF holds two webinars to let participants know what to expect and to preview the issues they will be discussing. Once volunteer advocates arrive in Washington, D.C., they are given two training sessions the night before the Hill visits: one on how to effectively use social media for advocacy and another covering in-depth explanations of the issues, talking points, and how to use personal experiences to connect to the larger themes.
Most chapters offer scholarships for people who are motivated to go to Washington Days but might need support to make the trip.
Nathan Schaefer, NBDF’s senior vice president of public policy and access, thinks one of the reasons that Washington Days has been so successful is that the event is coordinated by local chapter leaders across the country rather than by the national organization.
“People tend to have closer relationships with people who live near where they live, and they have more frequent interactions with them, so all of that helps people be more receptive to the idea of participating,” he says.
All chapters are required to send at least one community member to Washington Days, but they usually send several people. In many cases, the same families attend every year, helping them to form stronger bonds with their elected officials.
“There are some members of Congress who have literally watched children in the bleeding disorders community grow up, and that has been extremely meaningful,” Riker says.
At the same time, chapters are encouraged to send new people to D.C., Schaefer says. “If you come to Washington Days, you get intensive training as well as the best opportunity possible to speak to legislators, and that translates into a cohort of experienced advocates that our chapters can take back to their state level,” he says.
Schaefer says that once people have gone to Capitol Hill, it’s far less intimidating to go to their state capitals, but sometimes it works the other way around. “I remember seeing a family from Michigan at Washington Days, and the mom said to me, ‘I was really nervous to come here, but I realized it’s basically just like Lansing Days but with a whole lot more walking.’”
To Riker, the success of Washington Days is entirely due to the willingness of community members from across the country to share their personal stories and become more politically engaged.
“When we first started, the personal constituent story was important, but in this day and age, it’s become even more important,” she says.
Washington Days 2024 will be held March 6-8. If you’re interested in learning more, contact your local chapter.