Ryan White: the unknown legend.

He was an American teenager from Kokomo, Indiana, who became a national poster child for HIV/AIDS in the United States, after being expelled from middle school because of his infection.

Ryan White was born at St. Joseph Memorial Hospital in Kokomo, Indiana, to Jeanne Elaine Hale and Hubert Wayne White. He was circumcised and the bleeding would not stop. When he was three days old, doctors diagnosed him with severe Hemophilia A, a hereditary blood coagulation disorder associated with the X chromosome, which causes even minor injuries to result in severe bleeding. For treatment, he received weekly transfusions of Factor VIII, a blood product created from pooled plasma of non-hemophiliacs, an increasingly common treatment for hemophiliacs at the time.

Healthy for most of his childhood, he became extremely ill with pneumonia in December 1984. On December 17, 1984, during a partial-lung removal procedure, White was diagnosed with AIDS. The scientific community knew little about AIDS at the time: scientists had only realized earlier that year that HTLV-III, now called HIV, was the cause of AIDS. White had apparently received a contaminated treatment of Factor VIII that was infected with HTLV-III, although exactly when he was infected remains unknown to this day.

He became infected with HIV from a contaminated blood treatment and, when diagnosed in December 1984, was given six months to live. Doctors said he posed no risk to other students, but AIDS was poorly understood at the time, and when White tried to return to school, many parents and teachers in Kokomo rallied against his attendance. A lengthy legal battle with the school system ensued, and media coverage of the case made White into a national celebrity and spokesman for AIDS research and public education. Surprising his doctors, White lived five years longer than predicted but died in April 1990, one month before his high school graduation.

Before White, AIDS was a disease widely associated with the male gay community, because it was first diagnosed among gay men. That perception shifted as White and other prominent HIV-infected people, such as Magic Johnson, Arthur Ashe, the Ray brothers and Kimberly Bergalis, appeared in the media to advocate for more AIDS research and public education to address the epidemic.

The U.S. Congress passed a major piece of AIDS legislation, the Ryan White Care Act, shortly after White’s death. The Act has been reauthorized twice; Ryan White Programs are the largest provider of services for people living with HIV/AIDS in the United States.

In 1988, White spoke before the President’s Commission on the HIV Epidemic. White told the commission of the discrimination he had faced when he first tried to return to school, but how education about the disease had made him welcome in the town of Cicero. White emphasized his differing experiences in Kokomo and Cicero as an example of the power and importance of AIDS education.

By early 1990, White’s health was deteriorating rapidly. In his final public appearance, he hosted an after-Oscars party with former president Ronald Reagan and first lady Nancy Reagan in California. Although his health was deteriorating, White spoke to the Reagans about his date to the prom and his hopes of attending college.

Michael Jackson’s song “Gone too Soon” is dedicated to Ryan White.

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