The National Hemophilia Foundation (NHF) celebrates its 75th anniversary in 2023. Throughout the year, HemAware.org will be commemorating this special milestone with articles that look back at notable programs, initiatives, and events in NHF’s history.
Since its inception in 1948, the National Hemophilia Foundation and its members have worked to improve the lives of people with bleeding disorders and their families. The organization supports members of the bleeding disorders community in a number of ways: raising funds for research, teaching the public about bleeding disorders, spreading awareness, telling member stories, and working to improve how health care providers serve its community.
But out of all of NHF’s efforts, there’s one area that may be most crucial to solving problems its members face, and that’s advocacy.
“By and large, people recognize us as an advocacy organization — it’s been that way for all of our 75 years,” says Nathan Schaefer, NHF’s vice president of public policy.
Adds Bill Robie, NHF’s director of state government relations: “NHF also does many important things related to working with the provider community and educating our own community. But in terms of solving the problems that our members face day to day, it's all about advocacy.”
Schaefer says that many NHF staff members and chapter leaders engage in advocacy efforts throughout the year; that goes for staff who aren’t formally connected to its advocacy programs. For example, when the organization has a high-stakes meeting with a government official, it’s not uncommon for NHF President and CEO Dr. Leonard A. Valentino or COO Dawn Rotellini to be engaged.
NHF also works with a firm of lobbyists in Washington, D.C., that’s been there for decades, and members regularly travel to the nation’s capital for events such as Washington Days to advocate for issues important to NHF’s community. At the state level, NHF works with its chapters to train advocates, identify issues around accessing care, and train state-based advocacy coalitions to work with legislators.
Of course, NHF’s strong dedication to advocacy isn’t anything new, as its 75-year history is filled with stories of members mobilizing to make a real difference in the lives of people with bleeding disorders.
A History of Advocacy at NHF
When Robert and Betty Jane Henry founded NHF in 1948, the couple wanted to support their young son, Lee, and people like him who had bleeding disorders. Lee Henry was diagnosed with hemophilia after an abdominal bleed when he was just 14 months old. In a sense, NHF was founded with advocacy in mind: Frustrated by a lack of research and treatment, the Henrys created NHF to give the community a collective voice that would be heard by legislators and government agencies.
As the organization continued to grow, more chapters were established. The Midwest Chapter (now Bleeding Disorders Alliance Illinois, BDAI) was established in 1949, as were the Rochester and Chicago chapters in 1953; in 1956, the Michigan chapter. By 1963, NHF had 23 chapters nationwide. As more chapters were founded, the NHF community could more effectively enact meaningful change at the local level. Now, NHF has 52 established local chapters.
In 1990, NHF launched the Women’s Outreach Network of NHF (WONN) and the Men’s Advocacy Network of NHF (MANN). Another important year in NHF’s advocacy history was 1996, when the organization established Washington Days which now takes place in February or March each year. The annual three-day event has hundreds of advocates from all over the country gather in Washington to receive advocacy training and meet with legislators on Capitol Hill to discuss issues important to the NHF community.
“Launching Washington Days was significant in that we had this national effort that excited the community and energized them to be advocates,” Robie says.
Major Advocacy Wins
These advocacy efforts have paid off with important legislative victories over the past 75 years. In 1962, Rep. John Fogarty asked Congress to increase funding for hemophilia research and treatment, and John Walstrom, then the chairman of NHF, wrote a letter to Fogarty calling 1962 the most important year in the organization’s history because of the approved appropriation of funds.
The Hemophilia Act of 1973 was another crucial win, as it appropriated funds for the establishment of a national network of federally funded comprehensive hemophilia treatment centers (HTCs). NHF advocates partnered with New Jersey Sen. Harrison Williams to sponsor the bill, and on Nov. 15, 1973, NHF advocates met before the Senate Committee on Labor and Public Welfare to advocate for HTCs. The bill passed in 1975. At the state level, advocacy led to 24 states creating funding for hemophilia programs and treatment by 1976.
In the 1980s, NHF worked with health organizations to advocate for more research related to the HIV/AIDS crisis, which hit the bleeding disorders community particularly hard as the U.S. blood supply became contaminated with the HIV virus from infected donors. In 1983, NHF urged Congress to provide additional funding to support AIDS research.
In 1990, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed. It was named after Ryan White, a hemophilia and AIDS advocate, who died from complications related to AIDS the same year due to contaminated factor infusions. The landmark legislation provided federal assistance to people with HIV who would otherwise struggle to afford treatment, and brought more attention to bleeding disorders. The bill was led in the Senate by Senators Kennedy from Massachusetts and Hatch from Utah, again showcasing the community’s success of advocacy on every side of the aisle.
In 1995, Val D. Bias, advocate and future NHF CEO, testified before Congress to amend the Employee Retirement Income Security Act of 1974 to increase the purchasing power of individuals and employers, protect employees whose health benefits are provided through multiple employer welfare arrangements, and provide increased security of health care benefits. Fast forward to 1998, when NHF helped pass the Ricky Ray Hemophilia Relief Fund Act, which provided compensation to individuals (and their families) who acquired HIV from contaminated clotting factor products. When the bill passed, it had a record number of bipartisan cosponsors (second only to the Civil Rights Act of 1964).
In 2020, NHF announced a major win: passage of the Hemophilia SNF Access Act, which allows families affected by bleeding disorders who receive Medicare benefits to better access skilled nursing facilities (SNFs). NHF introduced the legislation in February 2020. Previously, Schaefer says, under Medicare’s reimbursement policy people with bleeding disorders weren’t able to access their clotting factor on top of what it would cost to stay in a skilled nursing facility on a daily basis.
“We had been hearing for years and years that this was a real limitation for patients who have acute recovery needs,” Schaefer says. “The reports are that patients are now able to access care at skilled nursing facilities.”
To Schaefer, these wins come down to NHF’s persistent efforts to advocate for its community and make sure their voices are heard.
“It wouldn't happen if we didn’t have a regular presence on Capitol Hill,” he says.