Ryan’s Legacy

Easing the Stigma of HIV

In the mid–1980s, when Ryan White was diagnosed with AIDS, discrimination against people with AIDS was widespread. People with AIDS were often demonized and shunned, in many cases because of prejudices related to the sexual and drug-using practices often associated with HIV transmission. Misconceptions about how the virus is and is not spread also fueled discrimination.

Ryan confronted the stigma of AIDS head-on when he attempted to return to school following his diagnosis. As the nation learned of his plight, many were horrified. Watching Ryan’s struggle as it played out on the national news and hearing him talk about the obstacles he faced as his community ignored the facts about HIV transmission, many began to understand that people with AIDS in communities across the country faced similar struggles.

For many people, Ryan was the first person with AIDS who they “knew,” if only from televisions or magazine reports. As a young boy from the Midwest infected through blood-based products used to treat his hemophilia, Ryan was a person with AIDS with whom many could relate or sympathize.

Watching as celebrities from the entertainment and sports worlds shook Ryan’s hand, gave him a hug, or sat beside him to share a meal, adults and kids learned that many of their fears about people with AIDS were unfounded.

Ryan used the visibility he received as an opportunity to plead the case for all people with HIV/AIDS. Never one to accept the label of “innocent” that many tried to attach to his name, Ryan urged compassion and understanding for all people with HIV/AIDS. Millions heard Ryan tell his story and in listening to him, it was easy to see his humanity and, ultimately, the humanity of all people fighting the same disease.

Much progress has been made in public attitudes toward people with HIV/AIDS since that time. Yet, one in four people in the U.S. still believes that “people who get AIDS have gotten what they deserve,” one in five is afraid of people with AIDS, and one in six is “disgusted” by them. There is still much work to be done, which is the one reason that Ryan’s mother, Jeanne, continues to devote her energy to spreading Ryan’s message.

Ryan White CARE Act

The Ryan White CARE Act is the nation’s largest discretionary investment in the care of people with HIV/AIDS. The Ryan White CARE Act funds primary health care and support services for people living with HIV/AIDS who lack health insurance and financial resources for their care. The U.S. Congress enacted the Ryan White CARE Act in 1990 and, based on the CARE Act’s strong record of delivering care to those most in need, reauthorized the act in 1996 and again in 2000.  In 2003, the Ryan White CARE Act will provide over $2 billion to support HIV and AIDS services in all 50 states, DC, and Puerto Rico. Each year and CARE Act-funded programs will reach more than 500,000 individuals with or at risk for HIV. 

On the floor of the U.S. Senate, Senator Orrin Hatch (R-UT), one of the authors of the legislation, explained why the program was names in Ryan’s memory:

This bill is dedicated to Ryan White because of the courage that he displayed and because of the life that he lived. And because of the influence that he has had upon all of us because of being infected with AIDS. I want to pay a particular tribute to him and to his mother and family for the example that they have set for all of us. I think this bill is a fitting tribute to Ryan White, although it is not nearly what he deserves. But it is one of the finest pieces of legislation to come out of this body. I think it is something that hopefully will bring some peace and some solace and some happiness to his family, knowing that it will do good.

Senator Edward Kennedy (D-MA) stated in his remarks:

One thing that was extraordinary, and there are many things about this remarkable young man, was after he received that tainted blood transfusion, to the moment he drew his last breath here on Earth, he never condemned anyone. He was not looking for the scapegoats. He was not looking for those who may have lived in a different lifestyle. He was not looking for scapegoats among individuals in our society. What he was doing was reaching out in the true spirit of the American character to recognize that there were people who were suffering,

Ryan White National Youth Conference on HIV and AIDS 

The annual Ryan White National Youth Conference on HIV and AIDS (RWNYC) is the only national conference dedicated to building the HIV prevention health services and advocacy skills of young AIDS activists, youth peer educators, HIV positive youth and those who work in support of young people. Over 600 youth and adults who work with youth from around the nation  attend to identify and share effective resources for HIV prevention among young people; present models of care, leadership and support services for HIV positive young people; present models of youth appropriate, culturally competent services to those infected, affected or at risk; develop leadership and advocacy skills; and strengthen youth leadership in the fight against HIV/AIDS.