My daughter has informed me that most people in her generation don’t know anything about AIDS, Hemophilia, or Ryan White. I find this pretty upsetting. How can we educate the next generation about the history of the bleeding disorders community?
Old Enough to Remember
This is a great question and an important reminder of how information must be shared with the next generation about the history of the bleeding disorders community. Donna Shaw, a former Philadelphia Inquirer reporter who covered the blood crisis, explained to HFA in 2014 why we should care:
“This is a story that could repeat itself, affecting far larger numbers of people than the community of hemophiliacs. That’s because human plasma is used to produce not just hemophilia medicines but also immunoglobulin, albumin and therapeutic proteins. Intravenous immunoglobulin (IVIG), which accounts for about half of all sales of plasma products, is used in patients with a variety of autoimmune and inflammatory conditions; albumin is used to treat burns, shock, and other ailments, and is an ingredient in some vaccines. Analysts estimate the global market for plasma-derived medicines at $11.8 billion and growing, citing the spread of infections, an aging population, and increasing healthcare expenditures. In short, millions of people are exposed to these products in the United States and worldwide.”[i]
HFA staff and volunteers created a history time line, beginning with the 1930s to present day, to inform and inspire advocacy efforts now and in the future. Below is a very brief overview; for the full time line, including links to references, please visit HFA’s website. HFA encourages you to share this information with your daughter and others in the bleeding disorders community. Knowledge is power; the responsibility lies with everyone in the community to make sure this history is not forgotten.
- 1930s–1940s: People living with hemophilia struggled with health problems. The median life expectancy was 27, and treatment was limited to whole blood transfusions and icing joints.
- 1950s–1960s: Improvements in blood transfusions during World War II led to hemophilia patients being able to get fresh whole blood or fresh frozen plasma. A major advance in hemophilia treatment came in 1964 with Dr. Judith Graham Poole’s discovery of cryoprecipitate, which significantly reduced the treatment time and was a better treatment option for bleeding.
- 1970s: Clotting factor became available for home use, and the network of comprehensive, federally-funded Hemophilia Treatment Centers (HTCs) began. This led to a sharp increase in positive outcomes for hemophilia patients, as life expectancy rose to 60.
- 1980s: Tragedy struck the bleeding disorders community as HIV/AIDS and Hepatitis C became widespread. There were many unknowns about HIV and how it was spread, although some in the scientific and research community, including the Centers for Disease Control and Prevention (CDC), surmised that HIV could be spread through blood and blood product. Many patients were encouraged to continue using clotting factor despite the risk.
- By the mid-1980s, almost 90% of severe hemophilia patients were infected with HIV and/or Hepatitis C. While the market in the U.S. would no longer accept untreated products, pharmaceutical companies continued to sell old, untreated stock overseas for years to come. The FDA would not ban the manufacture of untreated blood products until 1989. Many of the infected were children, including Ryan White and the Ray brothers. Ostracized because of their HIV status, White and the Ray brothers were legally blocked from attending school. Both won court cases to allow them back into their classrooms, but the families were physically threatened with violent acts against their homes.
- 1990s: National grassroots associations like the Hemophilia-HIV Peer Association, Committee of Ten Thousand (COTT), and HFA formed to address the unheard needs of the community. After the 1995 release of the Institute of Medicine’s report, “HIV and the Blood Supply,” a grassroots legislative effort developed, culminating in the passage of the Ricky Ray Hemophilia Relief Fund Act of 1998.
- 2000s–present: The bleeding disorders community was actively involved in the approval of new treatments for Hepatitis C. After decades, the lack of diagnosis, treatment, and services for women with bleeding disorders is of great concern. Inhibitor prevention and treatment has become a priority amongst researchers and the community. And, the clotting factor market has also undergone great growth in the last decade as new and novel therapies are being introduced, giving patients more options in the treatment of their disorder.
Today, as deliberations about health care reform continue to take place in the U.S. Senate, educating the next generation about this history is critical.
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.