Ryan_White

Ryan White

Ryan Wayne White (December 6, 1971 – April 8, 1990) was an American teenager from Kokomo, Indiana who became a national poster child for HIV/AIDS in the United States after being expelled from school because of his infection. A hemophiliac, he became infected with HIV from a contaminated blood treatment and, when diagnosed in 1984, was given six months to live. Though doctors said he posed no risk to other students, 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 struggle made White into a national celebrity and spokesman for AIDS research and public education. He appeared frequently in the media with celebrities such as singer Elton John, pop star Michael Jackson and talk show host Phil Donahue. Surprising his doctors, White lived five years longer than predicted and died in April 1990, shortly before he would have completed high school.

Before White, AIDS was a disease widely associated with the male homosexual community, because it was first diagnosed there. That perception shifted as White and other prominent HIV-infected people, such as Magic Johnson, 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 was reauthorized in 2006; its Ryan White Programs are the largest provider of services for people living with HIV/AIDS in the United States.

Biography

Early life and illness

Ryan White was born at St. Joseph Memorial Hospital in Kokomo, Indiana, to Jeanne Elaine (Hale) and Hubert Wayne White. When he was six 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 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 HIV was the cause of AIDS. White had received a contaminated treatment of Factor VIII that was infected with HIV. Because HIV had only been recently identified as the AIDS virus, much of the blood supply was tainted because doctors did not know how to test for the disease, and donors did not know they were infected. Among hemophiliacs treated with blood-clotting factors between 1979 and 1984, nearly 90% became infected with HIV. At the time of his diagnosis, his T-cell count had fallen to 25 (a healthy individual without HIV will have around 1,200). Doctors predicted White had only six months to live.

After the diagnosis, White was too ill to return to school, but by spring had begun to feel better. His mother asked if he could return to school, but was told by school officials that he should not. On June 30 1985, a formal request to permit re-admittance to school was denied by Western School Corporation superintendent James O. Smith, sparking a legal battle that lasted for eight months.

Battle with schools

Timeline of legal battle 1985–86 school year

June 30	Superintendent James O. Smith denies White admittance to school.
Aug. 26	First day of school. White is allowed to listen to his classes via telephone.
Oct. 2	School principal upholds decision to prohibit White.
Nov. 25	Indiana Department of Education rules that White must be admitted.
Dec. 17	The school board votes 7–0 to appeal the ruling.
Feb 6.	Indiana DOE again rules White can attend school, after inspection by Howard County health officers.
Feb. 13	Howard County health officer determines White is fit for school.
Feb. 19	Howard County judge refuses to issue an injunction against White.
Feb. 21	White returns to school. A different judge grants a restraining order that afternoon to again bar him.
Mar. 2	White's opponents hold an auction in the school gymnasium to raise money to keep White out.
April 9	White's case is presented in Circuit Court.
April 10	Circuit Court Judge Jack R. O'Neill dissolves restraining order. Ryan returns to school.
July 18	Indiana Court of Appeals declines to hear any further appeals.

White's school, Western Middle School in Russiaville, faced enormous pressure from many parents and faculty to bar him from the campus after his diagnosis became widely known. 117 parents (from a school of 360 total students) and 50 teachers signed a petition encouraging school leaders to ban White from school. Due to the widespread fear and ignorance about AIDS, the principal and later the school board assented. The White family filed a lawsuit seeking to overturn the ban. The Whites initially filed suit in the U.S. District Court in Indianapolis. The court, however, declined to hear the case until administrative appeals had been resolved.

The ways in which HIV spread were not fully understood in the 1980s. Scientists knew it spread via blood and was not transmittable by any sort of casual contact, but as recently as 1983, the American Medical Association had thought that "Evidence Suggests Household Contact May Transmit AIDS", and the belief that the disease could spread easily persisted. Children with AIDS were still rare: at the time of White's rejection from school, the Centers for Disease Control knew of only 148 cases of pediatric AIDS in the United States. Many families in Kokomo believed his presence posed an unacceptable risk. When White was permitted to return to school for one day in February 1986, 151 of 360 students stayed home. He also worked as a paperboy, and many of the people on his route canceled their subscriptions, believing that HIV could be transmitted through newsprint.

The Indiana state health commissioner, Dr. Woodrow Myers, who had had extensive experience treating AIDS patients in San Francisco, and the Federal Centers for Disease Control both notified the board that White posed no risk to other students, but the school board and many parents ignored their statements. In February 1986 the New England Journal of Medicine published a study of 101 people who had spent three months living in close but non-sexual contact with people with AIDS. The study concluded that the risk of infection was "minimal to nonexistent," even when contact included sharing toothbrushes, razors, clothing, combs and drinking glasses; sleeping in the same bed; and hugging and kissing.

When White was finally readmitted in April, a group of families withdrew their children and started an alternative school. Threats of violence and lawsuits persisted. According to White's mother, people on the street would often yell, "we know you're queer" at Ryan. The editors and publishers of the Kokomo Tribune, which supported White both editorially and financially, were also called homosexuals and threatened with death for their actions.

White attended Western Middle School for eighth grade for the entire 1986–87 school year, but was deeply unhappy and had few friends. The school required him to eat with disposable utensils and use separate bathrooms. Threats continued. When a bullet was fired through the Whites' living room window, the family decided to leave Kokomo. After finishing the school year, his family moved to Cicero, Indiana, where White enrolled at Hamilton Heights High School. On August 31, 1987 a very nervous White was greeted by school principal Tony Cook, school system superintendent Bob G. Carnal, and a handful of students who had been educated about AIDS and were unafraid to shake White's hand.

National spokesman

The publicity of White's trial 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 boy for the AIDS crisis, appearing in fundraising and educational campaigns for the disorder. White participated in numerous public benefits for children with AIDS. Many celebrities appeared with White, starting during his trial and continuing for the rest of his life, to help publicly destigmatize socializing with people with AIDS. Singers John Cougar Mellencamp, Elton John and Michael Jackson, actor Matt Frewer, diver Greg Louganis, President Ronald Reagan and Nancy Reagan, Surgeon General Dr. C. Everett Koop, Indiana University basketball coach Bobby Knight and basketball player Kareem Abdul-Jabbar all befriended White. He also was a friend to many children with AIDS or other potentially debilitating conditions.

For the rest of his life he 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 kiss. Elton John helped the family purchase their home in Cicero and in high school White drove a red Mustang convertible, a gift from Michael Jackson. Despite the fame and donations, White stated that he disliked the public spotlight, loathed remarks that seemingly blamed his mother or his upbringing for his illness, and emphasized that he would be willing at any moment to trade his fame for freedom from the disease.

In 1988, White spoke before President Reagan's AIDS Commission. 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.

In 1989, ABC aired the television movie The Ryan White Story, starring Lukas Haas as Ryan, Judith Light as Jeanne and Nikki Cox as sister Andrea. White had a small cameo appearance in the film. Others in the film included Sarah Jessica Parker as a sympathetic nurse, George Dzundza as his doctor, and George C. Scott as White's attorney, who argued against school board authorities. Nielsen estimated that the movie was seen by 15 million viewers. Some residents of Kokomo felt that the movie portrayed their entire town in an unfairly negative light. After the film aired, the office of Kokomo mayor Robert F. Sargent was flooded with complaints from across the country, even though Sargent had not been mayor at the time.

By the spring of 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.

Death

On March 29 1990, several months before his high school class graduated, White entered Riley Hospital for Children in Indianapolis with a respiratory infection. As his condition deteriorated he was placed on a ventilator and sedated. He was visited by Elton John and the hospital was deluged with calls from well-wishers. White died on Palm Sunday, April 8 1990.

Over 1,500 people attended White's funeral on April 11, a standing-room-only event held at the Second Presbyterian Church on Meridian Street in Indianapolis. White's pallbearers included Elton John, football star Howie Long and Phil Donahue. Elton John performed "Skyline Pigeon" at the funeral and also trained the Hamilton Heights High School choir to sing with him. The funeral was also attended by Michael Jackson and First Lady Barbara Bush. On the day of the funeral, former president Reagan—who had been widely criticized for failing to mention AIDS in any speeches until 1987 although he had spoken on the issue in press conferences beginning in 1985—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 home of his mother. In the year following his death, his grave was vandalized on four occasions. As time passed, however, White's grave became a 'shrine' for his admirers.

Legacy

White was one of a handful of highly-visible people with AIDS in the 1980s and early 1990s who helped change the public perception of the disease. White, along with actor Rock Hudson, was one of the earliest public faces of AIDS. Along with later public figures who became associated with HIV/AIDS, like the Ray brothers, Magic Johnson, Kimberly Bergalis and Freddie Mercury, White helped to increase public awareness that HIV/AIDS was a significant epidemic.

Numerous charities formed around White's death. The Indiana University Dance Marathon, started in 1991, raises money for the Riley Hospital for Children. Between 1991 and 2008, this event has helped raise over $5 million for children at Riley. The money raised has also helped found the Ryan White Infectious Disease Clinic at the hospital to take care of the nation's sickest children. White's personal physician, with whom he was close friends, Dr. Martin Kleiman, became the Ryan White Professor of AIDS Medicine at Indiana University School of Medicine in Indianapolis. In a 1993 interview, prominent gay rights and AIDS activist Larry Kramer said, "I think little Ryan White probably did more to change the face of this illness and to move people than anyone. And he continues to be a presence through his mom, Jeanne White. She has an incredibly moving presence as she speaks around the world.

In 1992, White's mother founded the national nonprofit Ryan White Foundation. The foundation worked to increase awareness of HIV/AIDS-related issues, with a focus on hemophiliacs like Ryan White, and on families caring for relatives with the disease. The foundation was active throughout the 1990s, with donations reaching $300,000 a year in 1997. Between 1997 and 2000, however, AIDS donations declined nationwide by 21%, and the Ryan White Foundation saw its donation level drop to $100,000 a year. In 2000, White's mother closed the foundation, and merged its remaining assets with AIDS Action, a larger charity. She became a spokeswoman for AIDS activism and continues to arrange speaking events through the site devoted to her son, ryanwhite.com. White's high school, Hamilton Heights, has had a student-government sponsored annual Aids Walk, with proceeds going to a Ryan White Scholarship Fund.

White's death inspired Elton John to create the Elton John AIDS Foundation. White also became the inspiration for a handful of popular songs. Elton John donated proceeds from The Last Song which appears on his album The One to a Ryan White fund at Riley Hospital.

Michael Jackson dedicated the song "Gone Too Soon" from his Dangerous album to White, as did 1980s pop star Tiffany with the song "Here in My Heart" on her New Inside album.

In November 2007, The Children's Museum of Indianapolis opened an exhibit called "The Power of Children: Making a Difference" which featured White along with Anne Frank and Ruby Bridges.

Ryan White and public perception of AIDS

In the early 1980s, AIDS was known as gay-related immune deficiency, because the disease had first been identified among primarily homosexual communities in New York City and San Francisco. At the start of the HIV/AIDS epidemic in the United States, the disease was thought to be a "homosexual problem" and was largely ignored by policy makers. White's diagnosis demonstrated to many that AIDS was not exclusive to homosexuals. In his advocacy for AIDS research, White himself always rejected any criticism of homosexuality.

White was seen by some as an "innocent victim" of the AIDS epidemic. White and his family strongly rejected the language of "innocent victim" because the phrase was often used to imply that homosexuals with AIDS were "guilty". White'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."

Ryan White Care Act

In August 1990, four months after White's death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White Care Act), in his honor. The act is the United States' largest federally funded program for people living with HIV/AIDS. The Ryan White Care Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.

Ryan White programs are "payer of last resort," which subsidize treatment when no other resources are available. The act was reauthorized in 1996, 2000 and 2006 and remains an active piece of legislation today. The program provides some level of care for around 500,000 people a year and, in 2004, provided funds to 2,567 organizations. The Ryan White programs also provide funding and technical assistance to local and state primary medical care providers, support services, healthcare provider and training programs.