Ryan White, The Boy With AIDS Who Changed The World

Kokomo, Indiana: When doctors advised Ryan White’s parents, Jeanne Hale and Hubert White, of the bad news, the infant boy had just opened his eyes for the first time ever.

It was December, 1971. Doctors had discovered when circumcising the boy that his blood didn’t coagulate as it should. He had hemophilia.

For White, it was the worst kind, type A. He would need infusions of plasma for life so he wouldn’t bleed out from a playground accident.

Nobody could have imagined at the time how this would one day affect Ryan’s, his parent’s, and in many ways the lives of the whole world. Prior to Ryan White, we knew little about AIDS, but what we thought we knew was a corrupt perception raised from our fears.

Early AIDS

The religious among us, at least some, knew exactly what AIDS was about. It was God’s rage against the abomination that was the gay lifestyle.

The earliest cases impacted the gay community the hardest, so much that the first name for the disease was GRIDS, Gay Related Immunodeficiency.

By the time doctors diagnosed White, they knew one thing about AIDS: humans knew even less than we thought about the disease.

We weren’t even sure how it spread, not exactly. We didn’t know if it could pass through saliva or sweat, toilet seats or only through sex.

The educated knew it wasn’t limited to the gay community, that anyone could contract it, but that didn’t stop the haters from hating.

Some of the ignorant wrote off non-gays who contracted the disease as innocent bystanders of the war or as closet cases who got what they deserved. The rest of AIDS’ victims were intravenous drug users, also under God’s thumb for their lifestyles.

Ryan White didn’t reverse these biases alone, but his life and death did fan the flames of the debate. When that debate was healthy, his battle introduced the idea that this had nothing to do with retribution.

White’s Life

Other than that first couple of days of life, White lived an otherwise normal life for a kid.

He attended school at nearby Western Middle School. Every week he received blood infusions of Factor VIII, blood plasma from a pool of donations, which meant he could do most things like a normal kid.

Factor VIII was a common treatment for hemophiliacs at the time, despite warnings from the CDC to use a surrogate. At least the CDC knew enough at the time that the plasma could be problematic with this new immunodeficiency disorder.

We would come to learn the gross oversight on the part of the pharmaceutical companies when 90% of hemophiliacs contracted AIDS from tainted Factor VIII between ’79 and ’84.

On December 17th, during a lung biopsy for pneumonia, Ryan White became one of them. Doctors diagnosed him with full blown AIDS. The news crushed White’s parents.

Regarding the news, Hale said,

“I felt like somehow, in some way, it was going to be something else. I really never really believed he had AIDS for quite a while.”

Life With AIDS

David Kirby, a prominent face of AIDS in the ’80s | changingthefaceofaids.wordpress.com

The metric for AIDS was and remains our T-cell counts. A healthy T-cell count hovers between 500 and 1200. White’s T-cells were at 25.

His future looked bleak, maybe six months long according to doctors. Hale took her son home with no intentions of sending him back to school. He was too sick.

Remarking on that time of her life, his mother, Jeanne Hale said,

“At the time when Ryan was diagnosed with AIDS, I mean, we heard of so many drugs coming out… By the time you heard of one, there would be another… And none of them worked.”

As did all AIDS patients at the time, they turned to every possible treatment for which they could gain access. Every attempt was a crapshoot at best.

White Vs. School

One day the treatments worked well enough to improve Ryan’s condition. He even started gaining weight.

“Mom, I want to go to school, I want to go visit,” White said.

The problem was his school, Western, had banned White from the campus. 117 parents signed a petition to prevent him from returning to school.

Of that time in their lives, Hale said,

“When Ryan was diagnosed, they only gave him 3-6 months to live. So at that time, I thought every cough, every fever, I worried that it was going to be his last. And I really never thought he’d be healthy enough to go to school.”

The Department of Education forced the school to admit White, but that wasn’t the end of the fight. His first day back, half the students stayed home.

Parents were cruel, accusing White of hiding his homosexuality, an accusation that at the time was unacceptable albeit ignorant and irrelevant.

The students were in no danger from him, but fear plagued the parents with ignorant. After an excruciating year at Western, the family moved to Cicero, Indiana where more educated school welcomed White.

The first day of school, the principal and several students greeted White outside the school. Whereas everyone at his last school kept their distance, these students wanted to shake his hand and make him feel welcome.

White’s Legacy

It’s easy to understand how only thirty years later people don’t remember Ryan White. Children raised since the ’90s only learn about the ignorance of early AIDS from history lessons.

It was 1990, congress passed the CARE act, otherwise known as the Ryan White Care Act, the boy who inspired it.

At the time, the support that rallied around this one boy shifted a nation, and consequently the world. It became the springboard from which we liberated ourselves from our fears.

Today, the disease is no mystery to us, but we don’t have to look far to find residual ignorance. The FDC only recently lifted the indefinite ban on collecting blood donations from gay men in 2015.

They still ask that donors have not managed in gay sex for a year when donating.

On April 8th, 199o, a respiratory infection finally caught up with the boy who only wanted to live a normal life. Calls from supporters flooded in; the new normal. He even had a visit from Elton John.

One month before he would have graduated, Ryan White closed his eyes for the last time.

At his funeral, 1,500 people attended the service in Indianapolis, including Michael Jackson and Barbara Bush. Amongst his pall bearers were his friends Elton John, Football star Howie Long and Phil Donahue.

Whether he wanted to or not, by living his life, Ryan White taught us so much about ourselves that we needed to learn.

Source: HRSA