Stigma and discrimination did not stop with these populations. It extended to almost anyone with the disease, including women and even children and their families. The most famous case of discrimination and the effects of AIDS-related stigma entered the public consciousness in 1985. A then 13-year-old HIV-positive boy named Ryan White successfully sued the local board of education for the right to attend his Kokomo, IN, school in person. Though ultimately embraced by the country, White experienced intensive bullying in class, and his family received numerous death threats at home, eventually forcing them to relocate.24 His mother, Jeanne White Ginder, recalls how White's story and precocious advocacy skills resonated with leaders from Hollywood and Washington, DC, ultimately helping to push forward the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which was named in his honor shortly after his death in 1990.
White’s experiences, along with the advocacy of other public figures diagnosed with AIDS at the time, helped humanize PLWHA. These courageous figures included Rock Hudson, who in 1985 became the first major celebrity to disclose he had AIDS.25 Arthur Ashe, the African-American tennis champion, initially kept his diagnosis a secret for fear of stigma. Yet, in the last year of his life he tirelessly worked to raise HIV awareness, until his death in 1993.26 Elizabeth Glaser, wife of actor Paul Michael Glaser, raised funds and convened think tanks of leading scientists to address pediatric AIDS. She and her husband testified before Congress and eventually established the Elizabeth Glaser Pediatric AIDS Foundation.27 National Basketball Association legend Earvin “Magic” Johnson announced in 1991 that he had AIDS, giving a public face to Black men who contracted HIV through heterosexual contact; he continues to address HIV stigma and raise AIDS awareness to this day.28
Despite the voices of brave souls who dared to speak out about HIV/AIDS, stigma did not go away. It thrived.
Ryan White HIV/AIDS Program: Addressing Stigma From the Start
An overwhelming lack of resources was the primary issue that drove creation of the Ryan White HIV/AIDS Program in 1990 and the small federally funded treatment programs that preceded it. However, the designers and implementers of these first programs had borne witness to the impact of the monster that was AIDS stigma. They had watched the sick simultaneously fight a disease no one understood and life-shattering discrimination that they understood all too well. It was clear to all that there was no hope of success for the new Ryan White HIV/AIDS Programs unless they were able to address the powerful effects of stigma.
So strong was the need to address stigma that, when the Program was enacted, specific approaches to combat stigma were codified into law. Others would become part of Program policy. Whether law or policy, these stigma-fighting components represent core values of the Ryan White HIV/AIDS Program and are responsible for bringing multitudes of PLWHA into care and keeping them there over time. Two enduring pillars of the program that help to reduce the harmful effects of stigma are consumer involvement and cultural competency.