In December of 1984, 13-year-old Ryan White was given 6 months to live after contracting AIDS during a contaminated treatment for hemophilia, a blood condition with which he had lived since birth. By June of 1985, keen to resume as normal a lifestyle as possible, Ryan attempted to return to school; however, due to ignorance and an intense stigma that surrounded the virus in its infancy, his wish was denied by school officials unable to ignore a petition signed by fearful parents and teachers. Ryan died on 9th April 1990, by which time he had returned to education, regularly appeared on television to tell his story, and become a beacon of hope for fellow AIDS sufferers the world over. Twenty years after Ryan’s death, the following letter was written to Ryan by his friend, Elton John, who had been at Ryan’s bedside on the day of his death.
Twenty years ago this month, you died of AIDS. I would gladly give my fame and fortune if only I could have one more conversation with you, the friend who changed my life as well as the lives of millions living with HIV. Instead, I have written you this letter.
I remember so well when we first met. A young boy with a terrible disease, you were the epitome of grace. You never blamed anyone for the illness that ravaged your body or the torment and stigma you endured.
When students, parents and teachers in your community shunned you, threatened you and expelled you from school, you responded not with words of hate but with understanding beyond your years. You said they were simply afraid of what they did not know.
When the media heralded you as an “innocent victim” because you had contracted AIDS through a blood transfusion, you rejected that label and stood in solidarity with thousands of HIV-positive women and men. You reminded America that all victims of AIDS are innocent.
When you became a celebrity, you embraced the opportunity to educate the nation about the AIDS epidemic, even though your only wish was to live an ordinary life.
Ryan, I wish you could know how much the world has changed since 1990, and how much you changed it.
Young boys and girls with HIV attend school and take medicine that allows them to lead normal lives. Children in America are seldom born with the virus, and they no longer contract it through transfusions. The insults and injustices you suffered are not tolerated by society.
Most important, Ryan, you inspired awareness, which helped lead to lifesaving treatments. In 1990, four months after you died, Congress passed the Ryan White Care Act, which now provides more than $2 billion each year for AIDS medicine and treatment for half a million Americans. Today, countless people with HIV live long, productive lives.
It breaks my heart that you are not one of them. You were 18 when you died, and you would be 38 this year, if only the current treatments existed when you were sick. I think about this every day, because America needs your message of compassion as never before.
Ryan, when you were alive, your story sparked a national conversation about AIDS. But despite all the progress in the past 20 years, the dialogue has waned. I know you would be trying to revive it if you were here today, when the epidemic continues to strike nearly every demographic group, with more than 50,000 new infections in the United States each year. I know you would be loudly calling for the National HIV/AIDS Strategy that was promised by President Obama but has not yet been delivered. I know you would reach out to young people. I know you would work tirelessly to help everyone suffering from HIV, including those who live on the margins of society.
It would sadden you that today, in certain parts of the United States, some poor people with AIDS are still placed on waiting lists to receive treatment. It would anger you that your government is still not doing enough to help vulnerable people with HIV and populations that are at high risk of contracting the virus, including sexually active teenagers. It would upset you that AIDS is a leading cause of death among African Americans.
It would frustrate you that even though hundreds of thousands of HIV-positive Americans are receiving treatment in your name, more than 200,000 don’t know their HIV-positive status, largely because a lingering stigma surrounding the disease prevents them from being tested. It would disappoint you that many teenagers do not have access to science-based HIV-prevention programs in school, at a time when half of new infections are believed to be among people under 25.
I miss you so very much, Ryan. I was by your side when you died at Riley Hospital. You’ve been with me every day since. You inspired me to change my life and carry on your work. Because of you, I’m still in the struggle against AIDS, 20 years later. I pledge to not rest until we achieve the compassion for which you so bravely and beautifully fought.
Months after Ryan’s death, the Ryan White CARE Act was enacted in his honour. To this day it offers support and funding to those with HIV/AIDS in the United States.
In 1992, inspired by Ryan’s story, Elton John launched the Elton John AIDS Foundation. It has since raised hundreds of millions of pounds whilst working to overcome the stigma and inequality that prevents this “global epidemic” from being ended.
According to the Joint United Nations Programme on HIV/AIDS, 1.5 million people were newly infected with HIV in 2020, and 680’000 people died of AIDS-related illnesses in the same period. Please visit their website to learn more.