About the Ryan White Care Act

Anyone who is involved with the HIV/AIDS epidemic in any way, either as a patient, a family member or a friend of a patient, or as an employee or volunteer in the healthcare field has undoubtedly heard about The Ryan White Care Act and about the federal funding for HIV/AIDS programs that is supplied as a result of the program. However, many people today do not know the background of the Ryan White Care Act, and I feel that it is essential for all of us involved in this epidemic to know the history behind this program and to know Ryan White.

Ryan White was born in Kokomo, Indiana (U.S.) in 1971. He was diagnosed with hemophilia (a disorder where the blood is unable to clot normally due to a deficiency of Factor VIII, one of the essential clotting factors) when he was only 3 days old. Ryan needed transfusions of Factor VIII ( a blood clotting factor) twice a week for his entire life to prevent him from bleeding to death. In 1984, while he was hospitalized for the treatment of an aggressive pneumonia, Ryan was diagnosed with AIDS after he had surgery to remove a part of his lung to treat the pneumonia.

He had been infected with HIV through one of the multiple life-saving transfusions that he had received. Ryan was 13 years old, and was given 6 months to live. He went on to fight the disease and turn his illness into something that people would learn from and benefit from for years. In the early 1980's, AIDS caused panic and fear among just about everyone due to the fact that not much was known about the disease at that time. Ryan was expelled from his school due to the supposed risk to the other students, but was determined to return to school and live his life normally. After legal battles, Ryan won the case and was readmitted to school with the provisions of a separate restroom and disposable utensils and plates in the cafeteria. Ryan and his family continued to face discrimination and threats of violence; his locker at school was vandalized and a bullet was even fired into the family's home. Ryan and his family eventually moved to Cicero, Indiana, a neighboring town, in order to escape the discrimination. In Cicero, Ryan and his family were welcomed by the town, his new classmates, and the school faculty. The Whites lived in a house that was purchased for them by Michael Jackson, and Ryan became well-known and well-respected by his classmates. Ryan participated in benefits to raise awareness about AIDS and money for AIDS patients. He was actively involved in educating people about the nature of HIV and AIDS and how it could be transmitted; he was proof that it was not a "gay" disease. He was instrumental in educating the country that it was safe to be around someone with the disease and that the virus was not transmitted by casual contact. Ryan made a big difference in the early years of the AIDS epidemic. He even spoke before the President's Commission about AIDS; click here to read his testimony. Ryan appeared on national television news shows and talk shows many times, attended many benefits for HIV/AIDS and acted as the "poster-boy" of the disease, and even had a movie made about him, "The Ryan White Story", which aired on ABC. Ryan died in 1990 of pneumonia caused by AIDS, at the age of 18. His funeral was a standing-room-only event attended by many celebrities including Elton John, Michael Jackson, Phil Donahue, and Judith Light. Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990. Besides Medicare and Medicaid, this program is the largest federally funded program for the the medical and psychological care of those living with HIV and AIDS. The program has been continuously funded since it began.