Ryan White’s Passion

How this young man turned his own personal tragedy into a national movement for change
Author: Margaret V. Ragni, MD, MPH

It was December 1984, and Ryan White was a middle school student in Kokomo, Indiana. He’d just learned during hemophilia clinic that he had HIV. He was expelled from school and told he had six months to live. But he was not complacent. He did not sit still. Together with his proactive mother (mothers of children with hemophilia are among the most proactive mothers I know), he became an activist. He fought the fear, bias and prejudice he felt. And in doing so, he advocated for all those affected by HIV/AIDS. His goal was simple: He wanted to be back in school with his friends. He wanted a normal life. He eventually found support and acceptance in Cicero, Indiana, where his family moved so he could attend school. Sadly, he died five years later, in April 1990—one month short of his high school graduation.

During his brief 18 years, Ryan turned his own personal tragedy into a national movement for change. He and his family advocated for social justice and scientific research to improve the lives of those who contracted this life-threatening infection—not just those with hemophilia, but those who acquired HIV via neonatal, heterosexual, homosexual, transfusion and needle transmission. Before Ryan, AIDS was considered a gay disease. Many shunned, avoided and discriminated against those with it. But Ryan and his supporters worked tirelessly to improve health outcomes and acceptance of all people with AIDS and united the country behind their cause. (See “Remembering Ryan White,” p. 16.)

His legacy includes the Ryan White CARE (Comprehensive AIDS Resources Emergency) Act, Ryan White HIV/AIDS Program and Ryan White Foundation, which increased public awareness of the disease, those it affected and the families caring for them. The Ryan White CARE Act, enacted by Congress in 1990 and reauthorized in 1996, 2000, 2006, 2009 and 2013, provided funding and AIDS care programs for those with low incomes. The Ryan White HIV/AIDS Treatment Extension Act of 2009 carries on this legacy, with the goal of continuing to address new and emerging needs for people with HIV/AIDS. Also, the Ryan White Foundation, founded by Ryan’s mother, raised money for medical research and for social support for affected individuals without social services or other resources.

Ryan set the bar high. There was no time for complacency then or now. Ryan’s passion lives on today as we continue to seek social change and scientific advances, including longer-lasting, less-immunogenic clotting proteins, better therapies for women and girls with bleeding disorders, more effective therapies for hepatitis C, prevention of cardiovascular complications of HIV therapies and successful gene therapy.

Margaret V. Ragni, MD, MPH, is professor of medicine and clinical translational science in the Division of Hematology/Oncology at the University of Pittsburgh Medical Center. She is also director of the Hemophilia Center of Western Pennsylvania.