Ryan White
Ryan White | |
|---|---|
| Born | December 6, 1971 |
| Died | April 8, 1990 |
| Cause of death | Complications from AIDS |
| Website | ryanwhite.com |
Ryan Wayne White (December 6, 1971 – April 8, 1990[1]) was a young man with AIDS from Kokomo, Indiana who became a national spokesman for AIDS, after being expelled from school because of his infection. A lifelong hemophiliac, he became infected with HIV from a tainted blood treatment in 1984 and given six months to live. White nevertheless tried to return to school, but parents and teachers in Kokomo rallied against him; though doctors said he posed no risk, AIDS was poorly understood at the time. A lengthy legal battle ensued, and media coverage of the struggle made White into a national celebrity and spokesman for AIDS research. 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 5 years longer than predicted and died shortly before completing high school in April 1990.
Before White, AIDS was largely viewed as something that was only a problem in homosexual communities. Over the course of the 1980s–90s that perception shifted as White and other prominent AIDS victims such as the Ray brothers, Magic Johnson or Kimberly Bergalis, appeared widely in the media advocating for more AIDS research and public education. 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 victims of HIV/AIDS.
Biography
Early life and illness
Ryan White was born on December 6, 1971 at St. Joseph Memorial Hospital in Kokomo, Indiana to Jeanne Elaine (Hale) and Hubert Wayne White. When he was 6-days-old, doctors diagnosed him with severe hemophilia, a hereditary genetic illness that prevents blood from clotting, and causes minor injuries to lead to severe bleeding. For treatment, he would receive transfusions of a blood product, Factor VIII, created from donated blood of non-hemophiliacs, an increasingly common treatment for hemophiliacs at the time.[2]
Healthy for most of his childhood, he had become extremely ill in December 1984 with pneumonia. On December 17, 1984, during a partial-lung removal procedure, White was diagnosed with AIDS. AIDS was poorly understood at the time: scientists had only realized earlier that year that HIV caused AIDS. At an unknown point in time, Ryan had received a tainted treatment of Factor VIII that was infected with HIV. Among hemophiliacs treated with blood-clotting factors between 1979 and 1984, nearly 90% became infected with HIV.[2] At the time of his diagnosis, his T-cell count had fallen to 25 (AIDS is diagnosed once HIV infection has reduced the count below 200, a healthy individual without HIV will have around 1,200). White was given six months to live.[3]
After the diagnosis, White was too ill to return to Western Middle School in Howard County, Indiana, but by spring had begun to feel better. His mother asked if he could return to school, but she was told he could 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 would last for 8 months.[4]
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 in the 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. |
When the public school that he attended, Western Middle School in Russiaville, Indiana, learned of his disease there was enormous pressure from many parents and faculty to bar him from school premises. Over 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 of 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.
Although HIV/AIDS was poorly understood, it was known at the time to spread via blood, and not be transmittable by any sort of casual contact. Since AIDS was fatal and incurable, however, many families in Kokomo believed the risk to be too great.[5] When White was permitted to return to school for one day in February 1986, 151 of 360 students stayed home from school. White also worked as a paperboy, and many of the people on his route canceled their subscriptions, believing that HIV could be transmitted through newsprint.[4]
Dr. Woodrow Myers, Indiana's state health commissioner who 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.[4] When White was finally readmitted in April, a group of families started an alternative school.[6] 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.[5] 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.[5]
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.[7] Threats continued. When a bullet was fired through the Whites' living room window, the family decided it was time to leave Kokomo.[3] After finishing the 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.[8]
National spokesman
The publicity of White's trial catapulted him into the national spotlight, caught up in a growing wave of AIDS coverage in the news media. Between 1985 and 1987, the number of news stories about AIDS doubled.[9] While isolated in middle school, White appeared frequently on national television and in newspapers to discuss his disease. Eventually he became known as a "poster boy" for the AIDS crisis. White participated in numerous benefits for children with AIDS. He befriended John Cougar Mellencamp, Elton John, Matt Frewer, Michael Jackson, Ronald Reagan and Nancy Reagan, Surgeon General Dr. C. Everett Koop, Bobby Knight and Kareem Abdul-Jabbar. 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.[3] 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.[10] But despite this, White disliked the public spotlight to an extent, loathed remarks that seemingly blamed his mother or his upbringing for his illness, and emphasized that he would trade his fame at any moment if he could be free of the disease.[10]
In 1988, White spoke before President Reagan's AIDS commission, where his speech was the only to receive applause from the committee during months of testimony. White emphasized his differing experiences in Kokomo and Cicero as an example of the power and importance of AIDS education.[7]
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 that argued against the school board authorities.[11] Neilsen estimated that the movie was seen by 15 million viewers. Some residents of Kokomo, Indiana 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.[12][11]
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.[13] Although his health was deteriorating, White spoke to the Reagans about his date to the prom and his hopes of attending college.[14]
Death
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.
President Ronald Reagan, April 11, 1990[14]
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. Elton John came and stayed in Indianapolis and the hospital was deluged with calls from well-wishers. White died on April 8, 1990.[10]
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, Indiana. White's pallbearers included Elton John, Howie Long and Phil Donohue. 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. The day of the funeral, former president Reagan, who had been widely criticized for failing to address AIDS soon enough,[15] wrote a contrite tribute to White that appeared in The Washington Post.[13][14] Reagan's statement about AIDS and White's funeral was seen as an indicator of how greatly White had helped change perceptions of AIDS.[13]
White is buried in Cicero, close to the home of his mother, Jeanne. In the year following his death, his grave was vandalized on four occasions.[16] As time passed, however, White's grave became a shrine for his admirers.[17]
Legacy
White was one of a handful of highly-visible AIDS-victims 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.[9][9]
Numerous charities sprung up around White's death. The Indiana University Dance Marathon, started in 1991, raises money for the Riley Hospital for Children. Over the past 17 years, the Indiana University Dance Marathon 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 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 for hemophiliacs like Ryan White, and for families caring for relatives with the disease.[18] 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 AIDS charity. She became a spokeswoman for AIDS-action and continues to arrange speaking events through the site devoted to her son, ryanwhite.com.[19]
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 wrote "The Last Song" which appears on his album The One in Ryan's memory. Michael Jackson dedicated the song "Gone Too Soon" from his Dangerous to White, as did '80s pop star Tiffany with the song "Here in My Heart" on her New Inside album.
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.[15] White's diagnosis demonstrated that AIDS was not only a disease that affected homosexuals, but White always rejected criticism of homosexuality in his advocacy for AIDS research.
Jerry Falwell, the influential fundamentalist minister who led the political group the Moral Majority, remarked of the disease, "AIDS is the wrath of a just God against homosexuals." White, however, was seen by some as an "innocent victim" of the AIDS epidemic.[18] 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."[18]
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 act sought funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.[20]
Ryan White programs are "payer of last resort," which fund treatment when no other resources are available. The Ryan White Care Act was reauthorized in 1996, 2000 and 2006. 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 fund local and State primary medical care providers, support services, healthcare provider training programs, and provide technical assistance to such organizations.[20][21]
References
- ^ "A Timeline of Key Events in Ryan's Life". Ryanwhite.com. Retrieved 2007-08-26.
- ^ a b Susan Resnik (1999). Blood Saga: Hemophilia, AIDS, and the Survival of a Community. University of California press. ISBN 0520211952.
- ^ a b c White, Ryan and Ann Marie Cunningham (1991). Ryan White: My Own Story. Dial Books. ISBN 0803709773.
- ^ a b c Michael Specter (September 3, 1985). "AIDS Victim's Right to Attend Public School Tested in Corn Belt". The Washington Post.
{{cite news}}: Check date values in:|date=(help) - ^ a b c Sharon Cohen (April 28, 1986). "'City Of Firsts' Struggles with Division over AIDS in School". Associated Press.
{{cite news}}: Check date values in:|date=(help) - ^ "Alternative School Opens in AIDS Scare". The Washington Post. April 23, 1986.
{{cite news}}: Check date values in:|date=(help) - ^ a b Tim Franklin (March 3, 1988). "Teen's Story of AIDS Prejudice Wins Hearts". The Chicago Tribune.
{{cite news}}: Check date values in:|date=(help) - ^ Fran Richardson (August 31, 1987). "AIDS Schoolboy Says First Day At New School Went 'Great'". Associated Press.
{{cite news}}: Check date values in:|date=(help) - ^ a b c Mollyann Brodie; et al. (2004). AIDS at 21: Media Coverage of the HIV Epidemic 1981-2002 (PDF). Kaiser Family Foundation. Retrieved 2007-09-09.
{{cite book}}: Explicit use of et al. in:|author=(help) - ^ a b c Dirk Johnson (April 9, 1990). "Ryan White Dies of AIDS at 18; His Struggle Helped Pierce Myths". The New York Times.
{{cite news}}: Check date values in:|date=(help) - ^ a b John J. O'Connor (January 16, 1989). "Review/Television; AIDS and Hemophilia". The New York Times.
{{cite news}}: Check date values in:|date=(help) - ^ "Kokomo Mayor Swamped With Angry Calls Following Ryan White TV Movie". Associated Press. January 18, 1989.
{{cite news}}: Check date values in:|date=(help) - ^ a b c "1,500 Say Goodbye to AIDS Victim Ryan White". Associated Press. April 11, 1990.
{{cite news}}: Check date values in:|date=(help) - ^ a b c Ronald Reagan (January 11, 1990). "'We Owe It to Ryan'". The Washington Post.
{{cite news}}: Check date values in:|date=(help) - ^ a b Randy Shilts (1987). And the Band Played On: Politics, People, and the AIDS Epidemic. St. Martin's Press. ISBN 0312009941.
- ^ "Vandals Again Desecrate Grave of AIDS Victim Ryan White". Associated Press. July 8, 1991.
{{cite news}}: Check date values in:|date=(help) - ^ "Ryan White Admirers Leave Notes, Mementos at Grave". Associated Press. December 10, 1992.
{{cite news}}: Check date values in:|date=(help) - ^ a b c Alex Witchel (September 24, 1992). "At Home With Jeanne White-Ginder; A Son's AIDS, and a Legacy". The New York Times.
{{cite news}}: Check date values in:|date=(help) - ^ Susan Schindehette, Giovanna Breu (May 15, 2000). "Ten years after her son's death, Jeanne White shuts down his foundation but carries on the fight against AIDS". People magazine.
{{cite news}}: Check date values in:|date=(help) - ^ a b "The Ryan White HIV/AIDS Program". Health Resources and Services Administration, HHS. Retrieved 2007-09-11.
- ^ Jessamy Taylor (August 22, 2005). Caring for “Ryan White”: The Fundamentals of HIV/AIDS Treatment Policy (PDF). The George Washington University. Retrieved 2007-09-09.
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