Wednesday marks the 25th anniversary of the death of Ryan White, the Indiana teenager whose battle with AIDS raised awareness and, more importantly, compassion for those who suffered from the disease. In that time, so much has been learned about the disease and how it's treated that it's hard to fathom the treatment White received. But White's case came at a time when little was known about HIV and AIDS and it marked a country stuggling to come to terms with an epidemic that was destroying entire communities, especially here in San Francisco.
White, who was a hemophiliac, was diagnosed with AIDS in December 1984, the result of a transfusion to treat his hemophilia involving contaminated blood. Doctors were never able to pinpoint when he contracted the disease because blood was not yet being tested for the presence of the retrovirus that caused AIDS. After the diagnosis, White was too sick to attend school but attempted to return a few months later, in 1985, only to be rejected by the Western Schools Corp. Middle School in Russiaville, Ind., out of fear he would spread the disease.
White and his family went to court to fight for his right to attend school, trying to ease fears and disprove the myths that AIDS could be passed along by such simple means as contact or sharing a water fountain. Their pleas fell on deaf ears and even after a court ordered that White be allowed to attend his school, the community reacted by harassing the teen and his family. By 1987, the Whites had moved to Cicero, Ind., where Ryan finally enrolled in a school, Hamilton Heights High School, whose student body embraced him.
In the years after his initial fight to be allowed back in school, White maintained a high profile as an advocate for AIDS victims, partnering with artists like Elton John and Michael Jackson and helping to force AIDS to the forefront of the nation's medical issues. In late March, 1990, White was admitted to a hospital in Indianapolis for a respiratory infection. His conditioned worsened and he passed away on April 8, 1990.
White's case not only affected the way AIDS victims were treated but also caused a dramatic shift in the perception of who was prone to the disease. At the time, AIDS was thought to primarily be a disease that struck gay men. Indeed, that demographic suffered the heaviets losses early on and is still the demographic most at-risk to contract the disease. But White's case showed anyone was susceptible to AIDS, that the disease did not discriminate. In the years after White's battle, high-profile sports stars Magic Johnson and Arthur Ashe would further this understanding; Johnson contracted the disease from unprotected heterosexual activity and Ashe, like White, from a transfusion involving contaminated blood.
Yet White's case was the first to bring the disease into the nation's living rooms and to bring pressure on a White House that for years refused to otherwise acknowledge the growing epidemic. Back in December, during a chat to commemorate World AIDS Day, Chronicle science editor Dave Perlman recounted how White forced Washington's hand: "Once the media was aware of a major health disaster, they started to cover it. There were political controversies from the beginning. ... [White's] death led the Administration, which was very slow to accept the idea that AIDS was an epidemic, to pass the Ryan White Act, passed by Congress, to set how people of low income received their prescription drugs. It was a big stepping stone to accepting that everybody was at risk of this epidemic."
Even leafing through selections of the Chronicle's coverage of the epidemic here in San Francisco, one of the hardest-hit cities, one can see the evolution of the disease from a totalmystery to a global concern. This is thanks to the actions of White and countless others who fought for recgonition of the disease and compassion for those who had it. More importantly, political leaders were finally forced to publicly address AIDS and the toll it was taking on its victims.
Upon White's death, President George H.W. Bush said, "Ryan's death reaffirms that we as a people must pledge to continue the fight, his fight against this dreaded disease.'' First Lady Barbara Bush was among the throngs that attended Ryan's funeral a few days later. And former President Ronald Reagan, who received much of the aforementioned criticism, said of White, "He and his family stand as a symbol of the need for greater tolerance and understanding toward those afflicted with AIDS."
In 1990, just months after his death, the Ryan White Care Act was passed by Congress and signed by Bush, granting federal funds for the care of low-income, under insured, or uninsured people with HIV/AIDS. It's been reauthorized several times already by each of our last three presidents, the last time in 2009 by President Obama, and is now known as the Ryan White HIV/AIDS program.
And yet, despite his widespread impact, White was, at heart, a kid who just longed for the world to understand him and learn tolerance and compassion for those who were battling AIDS. In a New York Times story immediately following his death, Brad Letsinger, a close friend of White's at his new school. underscored this point: ''When he first came, a lot of people were really scared. But Ryan helped all of us to understand. He didn't want people to feel sorry for him. He hated that. He just wanted to be a regular kid.''
