Dear Addy: History of Bleeding Disorders

Dear Addy,

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

Dear Old Enough,

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.