Ryan White, of Kokomo, Indiana, has long been an iconic figure in the history of bleeding disorders advocacy. Born with severe hemophilia A, Ryan was diagnosed with AIDS at age 13 after contracting HIV through contaminated factor infusions. This was in the early days of HIV/AIDS when the disease was little understood. Ryan was banned from attending school, and he and his family fought to overturn that ban.
In the process, Ryan became a national figure for HIV/AIDS awareness and helped to educate the public about the myths and realities of the disease. He passed away from AIDS in 1990 at the age of 18.
“Ryan’s story is an example of the impact that one person — a teenager from rural Indiana, no less — can have on the entire world,” says Patrick James Lynch, producer of an upcoming documentary about Ryan’s life who screened a teaser trailer of the documentary during BDC’s opening session. “The legislation that bears his name and still serves more than half of all Americans with HIV/AIDS [the Ryan White Comprehensive AIDS Resources Emergency Act] is an excellent example of bipartisan policy that truly makes a difference for all Americans,” he says.
“I’m a mom, just like all of you moms, and Ryan was a very ordinary kid, just like your kids, but because of a misunderstood disease called AIDS, my life changed overnight,” White-Ginder told the audience at BDC’s opening session. She went on to share personal reflections on Ryan’s journey, including his friendship with Elton John.
White-Ginder told the story of when she and Ryan were invited to attend an AIDS benefit in New York City, where he was interviewed beforehand by Good Morning America. “David Hartman asked Ryan, ‘Who are you looking forward to meeting at this AIDS benefit?’ and Ryan said, ‘Oh, boy, meeting Elton John, definitely!’ And I thought, ‘I’ve always loved his music, but I always thought Elton was a little different and kind of weird.’ Well, Elton ended up being my best friend in the whole world, and he still is today.”
Lynch says the documentary is a work in progress because more funding is needed to license all of the archival footage in the film. “We are a few hundred thousand dollars away from the finished film being TV-ready, but screening the teaser trailer at BDC was a tremendous way of making the wider community aware of the project, and our needs,” he says. “I'm in a few conversations with champions who may be able to help us, and I'm always open to more! Anyone who thinks they may be able to help is welcome to email me at [email protected].”