The National Bleeding Disorders Foundation (NBDF) 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 the foundation’s history.
In September 2017, hundreds of people in the bleeding disorders community gathered at the National AIDS Memorial Grove in San Francisco’s Golden Gate Park to dedicate a new permanent memorial for members of the hemophilia community affected by HIV and AIDS.
Nearly 40 years had passed since the first cases of what would come to be known as HIV were reported by the Centers for Disease Control and Prevention. Shortly after that, cases were identified in children with hemophilia. The U.S. blood supply had become contaminated with HIV from infected donors, and for children and adults with hemophilia who relied on plasma-derived products, the contaminated blood supply proved catastrophic.
More than half of the 17,000 people with hemophilia at the time, and 80% of those with severe hemophilia, became infected with HIV.
In the wake of the tragedy, the National Bleeding Disorders Foundation (then called the National Hemophilia Foundation, or NHF) advocated for more research related to the HIV/AIDS crisis as well as better screening and safety protocols for clotting factor products to prevent further infections. In 1984, the foundation’s Medical and Scientific Advisory Council (MASAC) recommended the use of heat-treated plasma concentrates to minimize the risk of HIV transmission.
One member of the bleeding disorders community, Ryan White, became one of the country’s best-known spokespeople for AIDS awareness and education. White had severe hemophilia and was diagnosed with AIDS in December 1984 at age 13. He and his family advocated for social justice and scientific research to improve the lives of people with hemophilia who contracted HIV, as well as those who acquired HIV via neonatal, heterosexual, homosexual, transfusion, and needle transmission.
White died in April 1990, and later that year, the Ryan White Comprehensive AIDS Resources Emergency Act passed both houses of Congress by a large margin. The landmark legislation established the Ryan White HIV/AIDS Program, the largest federally funded program for people with HIV and AIDS, and also brought more attention to bleeding disorders.
In 1998, the NHF helped pass the Ricky Ray Hemophilia Relief Fund Act, which provided compensation to people (and their families) who had acquired HIV from contaminated clotting factor products. When the bill passed, it had a record number of bipartisan co-sponsors, second only to the Civil Rights Act of 1964.
Today, the U.S. blood supply is safer than ever, due to screening, testing, and viral inactivation in donated blood and plasma. In addition, recombinant clotting factor concentrates carry virtually no risk of viral transmission. Since 1987, there have been no reported cases of HIV transmission through factor concentrates in the United States.
Nathan Schaefer, senior vice president of public policy and access at NBDF, says people in the bleeding disorders community can be nominated by NBDF to serve as members of one of two federal advisory committees that were established in response to the HIV/AIDS crisis:
the U.S. Department of Health and Human Services’ Advisory Committee on Blood and Tissue Safety and Availability and the Food and Drug Administration’s Blood Products Advisory Committee.
“This is a great opportunity for patients who are informed about the HIV/AIDS crisis to lend their voice and inform the way the federal government collects and manufactures plasma-derived products so that we do not repeat the terrible tragedy of the HIV/AIDS crisis,” Schaefer says.
The bleeding disorders community’s commitment to learning from this painful history is evidenced by a statement engraved at the entrance to the hemophilia memorial in Golden Gate Park. It was included at the end of a 2023 journal article about the importance of patient-centered safety considerations:
“Our hearts bleed from love, pain and suffering, fear and isolation. We battled on the fringe, warriors fighting stigma, ignorance, and inaction. We came together as families, communities, and fierce friends, to build community, and protect one another. We felt betrayal. We learned resilience. We promise this will never happen again.”