Shortly after Ryan’s birth it was discovered he had severe Haemophilia A, a genetic blood disorder causing excessive bleeding from minor injuries.
Throughout his childhood, Ryan’s health remained relatively stable. However, in December 1984, he fell severely ill with pneumonia. During a lung biopsy on December 17, 1984, he received a devastating diagnosis: AIDS. By this point, the scientific community had made significant strides in understanding the epidemic. Earlier that year, American researchers had identified and isolated HTLV-III, later known as HIV. Ryan, like thousands of others with Haemophilia, had received a contaminated treatment of factor VIII infected with HIV. The lack of screening for blood products at the time led to widespread infection among haemophiliacs.
Despite his grim prognosis—with a T-cell count plummeting to 25 per cubic millimetre—Ryan White defied expectations. Doctors gave him six months to live, yet he persisted. However, his battle extended beyond his health. When he expressed a desire to return to school in early 1985, he faced resistance from school officials. A formal request for re-admittance on June 30, 1985, was denied by Western School Corporation superintendent James O. Smith, igniting a protracted administrative appeal process that lasted over nine months.
Intense pressure from both parents and faculty mounted to prevent White from returning to campus after news of his diagnosis spread. Out of the school’s 360 students, 117 parents and 50 teachers signed a petition urging school leaders to bar White. Driven by widespread fear and misinformation about AIDS, the principal and later the school board yielded to this pressure, barring White from re-entry. In response, the White family pursued legal action, initially filing suit in the U.S. District Court in Indianapolis. However, the court deferred the case pending administrative appeals.
During the mid- to late 1980s, understanding of HIV transmission was incomplete. Although scientists knew it spread through blood and not casual contact, misconceptions persisted. As late as 1983, the American Medical Association speculated about household transmission of AIDS. Children with AIDS were rare, with only 148 cases documented in the United States at the time of White’s expulsion. Despite reassurances from health authorities that White posed no risk to others, many in Kokomo feared his presence.
Despite evidence to the contrary, including a 1986 study in The New England Journal of Medicine, which found minimal risk of transmission even in close, non-sexual contact, the school board and some parents remained adamant. When White was eventually readmitted, a faction of families withdrew their children, establishing an alternative school. Threats and harassment persisted, with White and his supporters enduring verbal abuse and even violence.
White’s experience at Western Middle School during the 1985–1986 academic year was marked by isolation and discrimination. Subjected to separate facilities and utensils, and exempted from gym class, he faced ongoing threats, including a bullet fired through his family’s window. Ultimately, the Whites relocated to Cicero, Indiana, where White began ninth grade at Hamilton Heights High School. Despite initial trepidation, he found a supportive environment among students educated about AIDS and unafraid to welcome him.
The publicity of Ryan White’s story catapulted him into the national spotlight, amidst a growing wave of AIDS coverage in the news media. Between 1985 and 1987, the number of news stories about AIDS in the American media doubled. While isolated in middle school, White appeared frequently on national television and in newspapers to discuss his tribulations with the disease. Eventually, he became known as a poster child for the AIDS crisis, appearing in fundraising and educational campaigns for the syndrome. White participated in numerous public benefits for children with AIDS. Many celebrities appeared with him, starting during his trial and continuing for the rest of his life, to help publicly destigmatise socialising with people with AIDS. Singers John Mellencamp, Elton John and Michael Jackson, President Ronald Reagan and First Lady Nancy Reagan all developed friendships with White.
“We owe it to Ryan to make sure that the fear and ignorance that chased him from his home and his school will be eliminated. We owe it to Ryan to open our hearts and our minds to those with AIDS. We owe it to Ryan to be compassionate, caring, and tolerant toward those with AIDS, their families, and friends. It’s the disease that’s frightening, not the people who have it.”
—Former US President Ronald Reagan, April 11, 1990
For the rest of his life, White appeared frequently on Phil Donahue’s talk show. His celebrity crush, Alyssa Milano of the then-popular TV show Who’s the Boss?, met White and gave him a friendship bracelet and a kiss. Elton John loaned Jeanne White $16,500 to put toward a down payment on the Cicero home, and rather than accept repayment, placed the repaid money into a college fund for White’s sister.
On March 29, 1990, White entered hospital with a respiratory tract infection. As his condition deteriorated, he was sedated and placed on a ventilator. He was visited by Elton John, and the hospital was deluged with calls from well-wishers. White died on April 8, 1990.
Over 1,500 people attended White’s funeral on April 11, White’s pallbearers included Elton John, football star Howie Long and Phil Donahue. Elton John performed “Skyline Pigeon” at the funeral. The funeral was also attended by singer Michael Jackson, future U.S. President Donald Trump and then-First Lady Barbara Bush. On the day of the funeral, Ronald Reagan wrote a tribute to White that appeared in The Washington Post. Reagan’s statement about AIDS and White’s funeral were seen as indicators of how greatly White had helped change perceptions of AIDS.
White is buried in Cicero, close to the former home of his mother. In the year following his death, his grave was vandalised on four separate occasions. As time passed, White’s grave became a shrine for his admirers.
Ryan’s mother told The New York Times,
Ryan always said, ‘I’m just like everyone else with AIDS, no matter how I got it.’ And he would never have lived as long as he did without the gay community. The people we knew in New York made sure we knew about the latest treatments way before we would have known in Indiana. I hear mothers today say they’re not gonna work with no gay community on anything. Well, if it comes to your son’s life, you better start changing your heart and your attitude around.
