Ryan Wayne White (December
6, 1971 – April 8, 1990) was an American teenager
Indiana who became a national poster child for HIV/AIDS in the United States after
being expelled from school because of his infection.
, 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 Elton John
, Michael Jackson
and 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
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
, 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
, shortly after White's death. The Act was reauthorized in
2006 and again on October 30, 2009; its Ryan White Programs are the
largest provider of services for people living with HIV/AIDS in the
Early life and illness
was born at St. Joseph Memorial Hospital in Kokomo, Indiana, to Jeanne Elaine (Hale) and Hubert Wayne
When he was six days old, doctors diagnosed him with
severe Hemophilia A
, a hereditary blood
coagulation disorder associated with the x
, which causes even minor injuries to result in
severe bleeding. For treatment, he received transfusions of
, 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
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
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 pooled
factor VIII concentrate 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
had dropped to 25 (a healthy individual without HIV will
have around 1,200). Doctors predicted White had only six months to
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
superintendent James O. Smith, sparking a
legal battle that lasted for eight months.
Battle with schools
school, Western Middle
School in Russiaville, faced enormous pressure from many parents and
faculty to bar him from the campus after his diagnosis became
|Timeline of legal
1985–86 school year
||Superintendent James O. Smith denies White
admittance to school.
||First day of school. White is allowed to listen to his classes
||School principal upholds decision to prohibit White.
||Indiana Department of Education rules that White must be
||The school board votes 7–0 to appeal the ruling.
||Indiana DOE again rules White can attend school, after
inspection by Howard County health officers.
||Howard County health officer determines White is fit for
||Howard County judge refuses to issue an injunction against
||White returns to school. A different judge grants a restraining
order that afternoon to again bar him.
||White's opponents hold an auction in the school gymnasium to
raise money to keep White out.
||White's case is presented in Circuit Court.
||Circuit Court Judge Jack R. O'Neill dissolves restraining
order. Ryan returns to school.
||Indiana Court of
Appeals declines to hear any further appeals.
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
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
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
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
, 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
extensive experience treating AIDS patients in San Francisco, and
the Federal Centers for
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
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
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.
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
, actor Matt Frewer
, President Ronald Reagan
and Nancy Reagan
, Surgeon General Dr. C. Everett Koop,
University basketball coach Bobby Knight and basketball player Kareem Abdul-Jabbar all befriended
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,
of the then-popular TV
show Who's the Boss?
White and gave him a kiss. Elton John helped the family purchase
their home in Cicero. Elton John had loaned Jeanne White $16,500 to
put toward a down payment on the Cicero home. 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
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
television movie The Ryan White Story
, starring Lukas Haas
as Ryan, Judith Light
as Jeanne and Nikki Cox
as his sister Andrea. White had a small
cameo appearance in the film, playing a boy also suffering from HIV
who befriends Haas. 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 legally
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, although Sargent
had not been elected to the office during the time of the
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.
29, 1990, several months before his high school class graduated and
before his senior prom, White entered Riley Hospital
for Children in Indianapolis with a respiratory infection.
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
, April 8, 1990.
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
. 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
and First Lady Barbara
. 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
. 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.
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
, 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
also became the inspiration for a handful of popular songs. Elton
John donated proceeds from The Last Song
appears on his album The
to a Ryan White fund at Riley Hospital. Michael
Jackson dedicated the song "Gone Too
" from his Dangerous
album to White, as did
1980s pop star Tiffany
song "Here in My Heart" on her New Inside
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
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
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
The Ryan White Act was set to expire on September 30, 2009,
although efforts began to obtain an extension to the act. The Ryan
White HIV/AIDS Treatment Extension Act of 2009 was signed on
October 30, 2009 by President Barack
, who announced plans to remove a ban on travel and
immigration to the U.S. by individuals with HIV. Obama called the
22-year ban a decision "rooted in fear rather than fact".
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