The Lasting Impact of Ryan White

On January 16, 2019, it will have been 30 years since the airing of “The Ryan White Story” on television.

Ryan White grew up in Kokomo, Indiana. At a young age he was diagnosed with severe hemophilia A, a hereditary blood coagulation disorder which made even small injuries result in severe bleeding.[1] At the time, common treatment for hemophiliacs was weekly infusions of factor VIII, a blood product created from pooled plasma of non-hemophiliacs.[2]

In December of 1984, Ryan was treated for pneumonia and subsequently diagnosed with Acquired Immunodeficiency Syndrome (AIDS) at age 13. He was one of the first children with hemophilia to be diagnosed with AIDS as a result of a tainted factor VIII infusion.[3] Ryan was told he had six months to live.

At the time, the public knew very little about AIDS and because of this Ryan had a difficult time returning to his normal life due to the backlash of his small, conservative community. Many believed casual contact could transmit the disease and refused to handle the newspapers he delivered or share public restrooms with him. Ryan was taunted by other students and his house vandalized.[4] Ryan’s mother, Jeanne White-Ginder, recounted the cruelty they met from the Christian community at the time.

“We heard the ‘God’s punishment’ a lot,” she said. “That somehow, some way he had done something he shouldn’t have done or he wouldn’t have gotten AIDS.”[5] Jeanne also recalled the hate received from those who blamed Ryan’s diagnosis on homosexuality, noting that she believed “there is no one doing more for this disease than the gay community.” Jeanne thanked the gay community they connected with in New York, who knew about the latest treatments long before they would have reached small-town Indiana.[6]

As he regained his health and began gaining weight, Ryan wanted more than anything to return to Western Middle School and see his friends. The superintendent of his school refused to allow Ryan back, a decision supported by the majority of teachers and parents. For months, Ryan attended school by telephone while his case made is way through an administrative appeals process. The state board of education ruled for Ryan to return to school, but parents responded by suing to keep him out. Courts ruled in Ryan’s favor and he was finally allowed to attend his school again.[7] Ryan’s community responded with more vitriol, taunting him and starting unfounded rumors. As a result, Ryan’s family moved to a new town: Cicero, Indiana.

In Cicero, the student body president of Hamilton Heights High School, Jill Stuart, arranged for medical experts to visit the school and educate the students about HIV, encouraging them to go home and educate their families. Because of Jill’s work, Ryan was welcomed with open arms at his new school. He was able to return to his teenage life: hanging out with friends, going to school dances, learning to drive, and even picking up a summer job.

In March of 1990, Ryan was admitted to the Riley Hospital for Children with a respiratory tract infection and passed away shortly after on April 8.

Throughout the 1980s and early 1990s, Ryan was one of a handful of highly visible people with HIV/AIDS and following his death many charities were formed in his name. Four months after his passing, in August 1990, Congress enacted The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act.[8] This act is the United States’ largest federally funded program for people living with HIV/AIDS. This program, now more commonly known as the Ryan White HIV/AIDS Program, aims to make care more widely available for low-income, un- and under-insured persons with HIV/AIDS and their families. In the 2016 fiscal year, The Ryan White HIV/AIDS Program was funded at $2.32 billion and reached approximately 52% of all people diagnosed with HIV in the United States.[9]

The effects of Ryan White can be seen every day around the US and have led to an 85.9% viral suppression level in 2017,[10] meaning about 85% of the clients receiving some sort of Ryan White funding are taking their medication daily and are maintaining an undetectable viral load and have effectively no risk of sexually transmitting HIV.

Caring Communities is just one of many organizations across the country that receive Ryan White funding in order to serve our community. In addition to our other funding, this allows us to provide housing and emergency financial assistance, pharmacy services, and help with dental and medical costs including paying for health insurance and covering the costs of life-saving medications.