About Ryan White

Ryan White

Ryan White was infected with HIV when he was only 13 years old. He had hemophilia, a blood-clotting disease that meant he needed to get blood transfusions all through his childhood. In the 1980s, HIV was a new disease and no one yet knew to screen donated blood. Ryan White was one of the first people in the US to talk openly about having HIV and became famous in the US and all over the world. He bravely fought to educate others about HIV and against the stigma and discrimination HIV-positive people often face.

In 1984, Ryan’s high school in Kokomo, Indiana, learned about his status. They refused to let him return to the school for fear that he would infect other students. Ryan was only allowed to participate in classroom activities by telephone. His family fought the superintendent’s decision in court and Ryan was able to return to school after a judge ruled in his favor. He was tormented when he returned to school. Students frequently insulted him and wrote degrading statements on his locker. His family faced discrimination as well. Store clerks refused to hand his mother change because they didn’t want to touch her. Restaurants threw away plates and silverware after the White family ate there. Someone even fired a gun into a window of the family’s home.

In 1987 the Whites moved to Cicero, Indiana, so Ryan could attend a school that would not discriminate against him. Instead, the school board held conferences for parents and students to educate the community about HIV/AIDS and to encourage compassion rather than fear and discrimination. A student at Ryan’s new high school later said, “When he first came a lot of people were really scared, but Ryan helped all of us to understand.” In 1988, Ryan spoke at the President’s Commission on AIDS. “Because of the lack of education on AIDS, discrimination, fear, panic, and lies surrounded me. I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand. This brought on the news media, TV crews, interviews, and numerous public appearances. I became known as the AIDS boy. I received thousands of letters of support from all around the world, all because I wanted to go to school.”

Ryan became very ill during his senior year of high school. Celebrities and public figures, including Vice President Dan Quayle, President George H.W. Bush, Donald Trump, Michael Jackson, and Elton John, called while Ryan was in the hospital to wish him well. At this time, though, doctors knew very little about how to treat HIV. Ryan died on April 8, 1990, surrounded by his mother, grandparents, and Elton John. Even in death Ryan could not escape the hatred and discrimination; his gravesite was vandalized four times in the following two years.

Ryan’s story was told in many newspapers, magazines, and television shows, and a TV movie was made about his life. His courage and openness started the conversation about HIV and the prejudice HIV-positive people face. At a time when HIV was called a gay disease or a drug addict’s disease, Ryan would say, “I’m just like everyone else with AIDS, no matter how I got it.”

The Ryan White HIV/AIDS Program

Within a few months of his death, the United States Congress honored Ryan’s memory when they passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. This act has changed over the years along with changes in medical care. In the beginning, it focused on providing end-of-life care so that HIV-infected people could have compassion and dignity in their final days. When highly active antiretroviral treatment (HAART), medications that give people with HIV much longer and healthier lives, were discovered in the 1990s, the law was reauthorized in 1996 to make sure people could get the medications they needed. Since then, the law has been authorized twice more, in 2000 and 2006, when the name was changed to the Ryan White HIV/AIDS Treatment Modernization Act. It now focuses not only on making sure HIV-positive people get medical care and medication, but also on trying to make sure that every HIV-positive person knows their status.

The act provides Federal funds to cities, states, and community-based organizations for medical and social services for individuals living with HIV/AIDS. Administered by the Department of Health and Human Services, HIV/AIDS Bureau, the Ryan White program serves over 500,000 people every year. The Ryan White program awards grants under five sections of the Act, parts A, B, C, D and F:

  • Part A provides emergency funding for medical care and support services directly to areas with a high number of people living with HIV/AIDS
  • Part B provides funding for medical care and support services to US states and territories
  • Part C provides funding for comprehensive outpatient primary health care
  • Part D provides funding for family-centered care for women, infants, children, and youth with HIV/AIDS
  • Part F provides funding for special programs: research on models of care, AIDS education and training, dental care, and programs for minorities who suffer disproportionately from HIV/AIDS

The Ryan White program is a “payer of last resort” and not an entitlement program. That means that Ryan White funding is meant to fill in gaps in health care, not to provide all the healthcare that people with HIV/AIDS need. Because of this, Ryan White case managers help people to find other ways to pay for their services, such as insurance, Medicaid/Medicare, VA, etc., and then the program covers the care that is not provided any other way.