During the 1980s, a teenager from Indiana became the face of the AIDS epidemic and left a legacy that’s still felt 35 years after his death.
Ryan White contracted AIDS through contaminated blood products used to treat his hemophilia. He became a spokesperson for people with AIDS after he and his family had to fight for his right to attend school due to stigma around the disease. He became an advocate and a spokesperson for people with HIV and AIDS and appeared on TV shows and magazines and met celebrities such as Sir Elton John, who became a close friend.
Ryan died of AIDS-related illness in 1990, just a few weeks before his high school graduation. But his name and his advocacy live on thanks to the Ryan White CARE Act, which was signed into law on Aug. 18, 1990.
Still in effect today, the act is the largest federally funded program in the U.S. for people with HIV/AIDS and focuses on connecting low-income, uninsured and under-insured people with community-based HIV/AIDS resources. It provides funding for organizations to offer support for people with HIV and AIDS – organizations like the Pittsburgh AIDS Task Force, now Allies for Health + Wellbeing.
Following the passage of the Ryan White CARE Act, PATF expanded rapidly. Case management services already provided by PATF became covered under Ryan White, and the organization was able to increase its other offerings to people with HIV and AIDS, including transportation assistance and emergency funds. PATF also opened its food pantry in 1992 to provide food assistance to clients.
Case management services and many of the supportive programs for people living with HIV available at Allies for Health + Wellbeing are funded through the Ryan White CARE Act, and they are needed services for people who are newly diagnosed with HIV or who have been living with HIV for any length of time.
“There’s still disparities that exist in accessing care, difficulties in navigating our complex existing health system,” said Kristina Dalykas, MPH, client services manager at Allies for Health + Wellbeing.
“A lot of people need support to be able to get to their medical appointments, to have nutritious food,” added Christy Owens, Allies’ senior director of programs. “They need access sometimes to assistance with utilities and eviction and things like that.”
Even medical equipment – wheelchairs, orthotics and prosthetics, CPAP machines and hospital beds, etc. – are available to people with HIV/AIDS because of the Ryan White CARE Act.
This funding remains critical to Allies and similar organization that provide HIV/AIDS support services. In 2023, more than 576,000 people in the U.S. received care and services through Ryan White programs, and thousands of lives have been saved since the act was first passed.
Though great strides have been made in the prevention and treatment of HIV since the Ryan White CARE Act was passed in 1990, if people cannot access that care, they are still at risk of serious illness or even death.
“The Ryan White Act is still essential in assisting folks and connecting them to this advanced care and reducing transmission,” Dalykas said. “Especially for folks who may be facing social economic barriers or may be underserved.”