By Tom Sheridan It is impossible to tell under what circumstances an ordinary life might transform into the extraordinary. It may come about because of something wonderful — a book you have written is accepted for publication and becomes a best seller. Or it may come about under the least auspicious of circumstances. For a 13-year-old boy growing up in the 1980s in Indiana, it came with a diagnosis of a terrible new disease called AIDS. His name was Ryan White.
Looking at the world through his eyes at that time, the world was very different than it was before or has been since. At that time, Ryan White would see the very best and very worst of human nature. AIDS was a newly emergent medical condition. Gay men were so over-represented among the earliest cases that the condition was initially known as Gay Related Immune Deficiency Syndrome. There was no test to tell if you were infected or exposed. There was no cure. There was no treatment. There was only fear. And there was courage.
Except for his hemophilia, Ryan White was a boy like any other. But once diagnosed, his family and home were threatened. He was ostracized. He had to relocate to a new town and new school and new community that accepted him. Through that horror, he found courage and his story became nationally known. Celebrities became his friends.
For the many thousands of others who were being diagnosed in the 1980s, the challenges of Ryan’s experience with AIDS were not unique. Many lost jobs and places to live, often turned away by their families. People were shunted off to the corners of care or needed services that did not even exist. The cracks in our system of care grew large and many people fell through them. As immune systems became weaker, needs became stronger — medical and dental, pharmaceutical and social, mental health and housing and food. It was pervasive in scope.
Ryan White died at the age of 18, and this month marks the 25th anniversary of the signing of the legislation that bears his name. The Ryan White Care Act would forever dramatically change the landscape for people with AIDS by creating a structure for delivering critical services and support for the ever-increasing number of men, women and children being diagnosed.
Although the passage of this legislation was carried by the spirit of a little boy, what made it transformative was its design. It was the work of eight pioneering AIDS service organizations who knew from the front lines exactly what was needed. And it was a cause that found heroic champions in Sens. Edward M. Kennedy and Orrin G. Hatch; and Reps. Nancy Pelosi and Henry A. Waxman.
Much has changed about the epidemic since that time. Now there is not only a test, there are genetic tests to differentiate the virus. Today, there is a vast armamentarium of treatments made possible through the Ryan White Care Act. These developments have dramatically reduced what once was an overwhelming mortality rate for thousands of sufferers. Still, if Ryan was alive today, he would see that while much progress has been made since those sad early days, there is still a great deal of unmet need.
The challenges of AIDS 25 years after the passage of Ryan White are complex and controversial. Many worry that apathy has replaced rage; racism has replaced homophobia as a reason to ignore where the epidemic is growing rapidly; and new innovations in programs, services and science have stalled. Our mission all those years ago was to end the epidemic and its suffering—we have not met that mission yet — lives are still lost, needs go unmet and the virus has not been eradicated.
While much has changed about AIDS, our resolve to make a positive difference must not. What was once the burden of a few must now be the task for many — renewing interest in activists and policymakers as well as foundations. We must bring new partners to the table like corporate America. There must be a renewed effort to end this epidemic, once and for all, where not just eight organizations spearhead but 80 public and private partners issue a call to action to end AIDS.
For the first time in its history, we know how to bring the epidemic to its knees. We can make a world where 13 year old boys need never have their lives transformed by a virus they cannot even see. If he were alive today, that is the world Ryan White would want to see. The world he deserved.
Tom Sheridan, founder of The Sheridan Group, has worked on using policy and public-private partnerships to shape social issues for over 25 years and was the chief architect and strategist behind the enactment of the Ryan White CARE Act.