Biography:

Ryan White

Ryan White (1971-1990) contracted AIDS through a blood transfusion when he was 13 and worked to educate people about the disease until his death at age 18. As a result of his efforts, and those of his mother Jeanne, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Care (CARE) Act, which provides health care resources to Americans with HIV/AIDS who have no insurance or not enough insurance to get proper care.

Ryan White was born on December 6, 1971 in Kokomo, Indiana. When he was three days old, doctors informed his parents that he had hemophilia, an inherited disease in which the blood does not clot. People who have this disease are vulnerable, since an injury as simple as a paper cut can lead to dangerous bleeding. Fortunately for White and his parents, a new treatment, called Factor VII, recently had been approved by the U.S. Food and Drug Administration. This treatment is made from blood and contains the clotting agent that allows healthy people to heal quickly from wounds.

Even with the treatment, White had to be very careful. He bled easily and the most dangerous and painful bleeds occurred when a blood vessel bled in a joint. "A bleed occurs from a broken blood vessel or vein," White explained in his testimony before the President's Commission on AIDS. "The blood then had nowhere to go so it would swell up in a joint. You could compare it to trying to pour a quart of milk into a pint-sized container of milk." He was in and out of the hospital for the first six years of his life but despite this managed to live a fairly normal childhood.

In December 1984, when he was 13, White contracted pneumonia and had surgery to remove part of his left lung. After two hours of surgery, his doctors told his parents that he had contracted the incurable disease of Acquired Immunodeficiency Syndrome, or AIDS, through his Factor VII blood transfusions. Someone with the disease had donated blood, and the virus had been in the blood that White received. (Since that time, better screening procedures have been put in place to make blood transfusions safer). "I spent Christmas and the next thirty days in the hospital," White told the President's Commission on AIDS. "A lot of my time was spent searching, thinking and planning my life. I came face to face with death at 13 years old."

White's doctors told him that he had six months to live, but White decided that he would continue to live a normal life, attend school, and spend time with his friends. "I hate the idea of anything that makes me seem sick forever. Maybe I have an incurable disease, but I don't have to be a permanent invalid," he said in his book Ryan White: My Own Story.

Struggles Against Ignorance and Hatred

White had not counted on the ignorance, fear, and hatred he would encounter in his small home town of Kokomo, Indiana. At first, people there claimed that there were no health guidelines for a person with AIDS to attend a normal school. Even after the Indiana State Board of Health set guidelines saying it would be safe for the other children if White attended school, the school board, his teachers, and the principal tried to keep him out of school. They feared he would spread the disease, even though it was known by that time that AIDS cannot be spread by casual contact. White and his mother took the case to court. Eventually they agreed to meet some of their neighbors' concerns by having White use a separate restroom, not take gym class, drink out of a separate water fountain, and use disposable eating utensils and trays at lunch. Even so, 20 students were pulled out of school by their parents, who started their own school to keep their children from having any contact with White.

Ryan later told the Commission that his townspeople's ignorance and fear regarding AIDS led him to become the target of jokes and some spread lies about him biting people, spitting on vegetables and cookies (and thus supposedly spreading the disease), restaurants throwing away dishes he had eaten from and students vandalizing his locker and writing obscenities and anti-gay slurs (because at that time, AIDS was believed to be a disease primarily of gay men) on his books and folders. An even more frightening incident occurred when someone fired a bullet into White's home.

White told the Commission, "I was labeled a troublemaker, my mom an unfit mother and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand." This lack of acceptance, even in church, was a blow to the Whites, who were committed Christians. As White's mother told Phil Geoffrey Bond in Poz, a magazine for people with HIV and AIDS, "I worked with a Pentecostal [person] who told me, 'You know, Ryan wouldn't have AIDS if he went to my church."'

Ryan wrote in his book, "I had plenty of time back then to think about why people were being mean. Of course it was because they were scared. Maybe it was because I wasn't that different from everybody else. I wasn't gay; I wasn't into drugs; I was just another kid from Kokomo. … I didn't even look sick. Maybe that made me more of a goblin to some people."

White's Story is Publicized

White's ordeal was soon publicized and he began receiving enormous amounts of media attention. He received thousands of letters supporting his right to go to school, and met politicians, movie stars, and top athletes, all of whom supported him. He appeared on numerous television programs, including CBS Morning News, the Today Show, Sally Jessy Raphael, Phil Donohue, Hour Magazine, the Home Show, Peter Jennings' "Person of the Week," Nightline, West 57th Street, P.M. Magazine, Entertainment Tonight, and Prime Time Live. White was also featured on the cover of the Saturday Evening Post, Picture Week, and People magazines.

Meanwhile, White's family was struggling with his medical expenses. As White became more ill, his mother had to miss more days from her work at General Motors and the family couldn't pay their bills. His sister Andrea, a championship roller skater, dropped her lessons and travel to competitions because the family simply did not have the money for them, or for anything else. White's health was steadily declining and he was being tutored at home. He dreamed of his family moving into a larger house and being accepted in a community. This dream became a reality when an ABC movie, The Ryan White Story, was made about his life. Ryan acted in the movie, playing his best friend, Chad. "I wanted to make that movie because I was hoping that what we went through will never happen to anyone else," White wrote in his book.

In 1987, using the money from the movie, White's family moved to Cicero, Indiana, where they found acceptance. "For the first time in three years," Ryan told the Commission, "we feel we have a home, a supportive school, and lots of friends. … I am a normal, happy teenager again. I have a learner's permit. I attend sports functions and dances. My studies are important to me. I made the honor roll just recently, with two As and two Bs … I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991."

AIDS Activism

Before White's experience was publicized, there had been no public reports of children who had AIDS. Following his diagnosis, White and his mother Jeanne became two of the world's best-known AIDS activists and educators. Jeanne founded the Ryan White Foundation, the only national organization in the United States devoted to HIV (human immunodeficiency virus, the virus that causes AIDS) and AIDS education for young people. They realized that much of the hatred aimed at White was the result of ignorance. "It was difficult, at times, to handle, but I tried to ignore the injustice," White wrote in his book, "because I knew the people were wrong. My family and I held no hatred for those people because we realized they were victims of their own ignorance. We had great faith that, with patience, understanding, and education, my family and I could be helpful in changing their minds and attitudes around."

When White was 16, he testified before the President's Commission on AIDS, describing his experience with bigotry as well as the financial difficulties his family had experienced as a result of his illness. White was a compelling spokesman but he was not alone. By 1991, local health departments, hospital emergency rooms and other health care providers experienced a surge in the number of patients who desperately needed care but could not pay for it. As the number of cases increased, many areas in the United States reported becoming overburdened with the cost of caring for people with AIDS who had little or no health insurance.

White died on April 8, 1990 in Cicero, Indiana. During his short 18-year life he accomplished more than many people who live long, healthy lives. His activism and legacy of concern for others with AIDS remains. "I've seen how people with HIV/AIDS are treated and I don't want others to be treated like I was," he said. Shortly after his death, White's mother went to Congress to speak to politicians on behalf of people with AIDS. She spoke to 23 representatives, although Jesse Helms of North Carolina refused to speak to her even when she was alone with him in an elevator. Most representatives, however, were sympathetic to her story.

White's activism, and that of his mother Jeanne, helped AIDS patients all over the United States receive care that they otherwise could not have afforded. The public was also educated about the nature of the disease. In 1990, just a few months after White's death, Congress passed P.L. 101-381, the Ryan White Comprehensive AIDS Resources Emergency Care (CARE) Act. The Act is administered by the Health Resources and Services Administration and aims to improve the quality of care for low-income or uninsured individuals and families with HIV and AIDS who do not have access to care. The Act supports locally developed care systems and is founded on partnership between the U.S. federal government, states, and local communities. It emphasizes outpatient, primary, and preventive care in order to prevent overuse of expensive emergency room and inpatient facilities.

Between the Act's authorization in 1991, and May of 1996, nearly $2.8 billion in federal funds were appropriated to provide care to more than 500,000 low-income Americans living with HIV or AIDS. From 1993 to 1996, funding for the program increased from $348 million to $738.5 million. The Act was reauthorized in May 1996 and continues to provide care to Americans living with HIV and AIDS.

White's mother, Jeanne, has collaborated with writer Susan Dworkin to write a book about her experiences with White, Weeding Out the Tears: Mother's Story of Love, Loss and Renewal, published in 1997. White wrote in his book, "… I drifted back to a question some kid asked me once. 'Would you give up all your fame to get rid of AIDS?' he wanted to know. How dumb can you get! I snapped my fingers at him. "Like that, I'd give it up like that."'

Ryan White
Born	December 6, 1971 Kokomo, Indiana
Died	April 8, 1990 Indianapolis Complications from AIDS
Website	ryanwhite.com

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]

Wikisource has the speech Ryan gave before the commission:

White's speech

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

President Bush signs the Ryan White HIV/AIDS Treatment Modernization Act of 2006, in the Oval Office Tuesday, December 19, 2006.

Main article: 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 on 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
^ ^a ^b ^c
^ ^a ^b ^c
^ "Alternative School Opens in AIDS Scare", The Washington Post, April 23, 1986.
^ ^a ^b
^ Fran Richardson. "AIDS Schoolboy Says First Day At New School Went 'Great'", Associated Press, August 31, 1987.
^ ^a ^b ^c
^ ^a ^b ^c
^ ^a ^b
^ "Kokomo Mayor Swamped With Angry Calls Following Ryan White TV Movie", Associated Press, January 18, 1989.
^ ^a ^b ^c
^ ^a ^b ^c
^ ^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.
^ "Ryan White Admirers Leave Notes, Mementos at Grave", Associated Press, December 10, 1992.
^ ^a ^b ^c Alex Witchel. "At Home With Jeanne White-Ginder; A Son's AIDS, and a Legacy", The New York Times, September 24, 1992.
^ Susan Schindehette, Giovanna Breu. "Ten years after her son's death, Jeanne White shuts down his foundation but carries on the fight against AIDS", People magazine, May 15, 2000.
^ ^a ^b The Ryan White HIV/AIDS Program. Health Resources and Services Administration, HHS. Retrieved on 2007-09-11.
^ Jessamy Taylor (August 22, 2005). Caring for “Ryan White”: The Fundamentals of HIV/AIDS Treatment Policy. The George Washington University. Retrieved on 2007-09-09.

External links

Persondata
NAME	White, Ryan
ALTERNATIVE NAMES	White, Ryan Wayne
SHORT DESCRIPTION	AIDS spokesperson and "poster boy"
DATE OF BIRTH	December 6, 1971
PLACE OF BIRTH	Kokomo, Indiana
DATE OF DEATH	April 8, 1990
PLACE OF DEATH	Indianapolis, Indiana

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