09.11.15

On the 25th Anniversary of the Enactment of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act

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IMG_3633This post is adapted from remarks made by Tim Westmoreland at a celebration convened by the Office of National AIDS Policy at the White House on September 9, 2015. Professor Westmoreland is Professor from Practice, Georgetown University Law Center; Senior Scholar, O’Neill Institute for National and Global Health Law; and Former Counsel, Subcommittee on Health and the Environment, U.S. House of Representatives (1979-1995).  Any comments on this post should be directed to Professor Westmoreland at westmort@law.georgetown.edu.
On the 25th Anniversary of the Enactment of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, we celebrate a law that has made a huge difference in the lives of millions of people. We celebrate the women and men, sometimes anonymous and frequently unacknowledged, who work in places like NIH, CDC, FDA, HRSA, SAMHSA, and CMS, and who fought to get the facts out and to take action when so many were frozen by fear. We celebrate the thousands of activists who banged on the doors and demanded attention. We celebrate the leaders who overcame the fear and prejudice and acted. And, we celebrate a boy who gave his life and his name to the fight to conquer an epidemic.
But we also must remember the millions of people in this country and around the world who have died because of AIDS and the millions who loved and lost their family and friends. And we must remember the lessons we learned 25 years ago when the law we are celebrating was first enacted. 
Those were very bad times.
People were sick and dying. Funerals became frequent, something that is not supposed to happen for Americans in their 20s and 30s. Hospital emergency rooms were filling up. Since there were no good drugs and so little that could be done, people were getting pneumonia, tuberculosis, and meningitis. They turned to inpatient care because there was no outpatient care. There were so many people with AIDS that some urban hospitals had trouble getting to patients from car crashes and from gunshots.
New rumors, guesses, and wild ideas were coming up every day. One Congressional witness talked about spores. Several talked about sneezing.
And the rumors and wild ideas produced responses that were sometimes crazy and sometimes cruel. People lost their jobs (and their health insurance). Children were thrown out of school. Reputable pundits were writing about quarantines and requiring tattoos (and I don’t mean fringe pundits; it was in the New York Times).
People were afraid. Those who weren’t sick were afraid they’d get sick. Those who were sick were afraid they’d die. And those most affected were afraid that no one cared, that the American government was ignoring them, and that help was not on the way. As contradictory as it may sound, these bad times were filled with both apathy and hysteria.
The government abdicated its responsibilities. HHS said that everything that needed to be done was being done. But leaked plain-brown envelopes showed that the scientists had proposed large new efforts that were quietly turned down. DOJ said that the civil rights laws did not cover people with AIDS. But earlier drafts showed that staff attorneys had recommended that the law follow the medical science and protect people with AIDS and HIV. Requests for emergency help were ignored. Clinics and hospitals worked with what they had, forming a sort of budget and staff triage around the epidemic.
It took the convergence of many groups and individuals to produce something responsive and good. I was always inside the system, so there is much that I don’t know—and that Jean McGuire and others who organized and mobilized know so well.
It took public health and medical professionals who worked double-time to study and count, to produce tests and treatments, and to quell panic. Obviously, nothing could have been done without research on diagnosis and treatment. But also expertise was needed to stop the crazy things. Without data and studies, speculation would have made bad laws. Without the local, state, and public health officers, even more over-reactions would have happened.
It took activists who forced the world to look at what was happening and to not let the world keep turning away. Many of the folks in black t-shirts didn’t have a detailed agenda. Authorizations and appropriations got mixed up a lot. But that’s not the point. The protests and parades kept the focus on doing something—and other people were around to spell out what that was.
It took a few courageous politicians—including my former boss, Henry Waxman—to make their way skillfully through the politics and the process, often facing active opposition from the biggest powers of the system. Congressional hearings were held to release budget documents. Hearings were held to give a forum for people like Surgeon General Koop to get out information that the Administration didn’t. Hearings were held to highlight the need for Federal assistance in health care.
And it took the coming out of people who had every reason to be afraid of the spotlight. They made the disease more than epidemiology and virology and hematology. These were people who were sick and the friends and loved ones of these people. They made it into a tragedy of familiar faces who needed real help.
The most visible of these were Ryan and Jeannie White, to whom we all owe a great debt.
But there were thousands and thousands of others who simply told their families and their schools and their churches and their co-workers that they needed help. These were people who didn’t even get a panel on the Quilt, but who changed the minds of those around them.
That meant that politicians who did not come from New York, Boston, San Francisco, and Los Angeles heard that something had to be done. Politicians from Kentucky, Utah, and Missouri responded because they knew that AIDS was real to someone at home. I continue to believe that this humanization of AIDS led to a response from the Congress that it never would have given had they thought only of urban gay men and drug users. At that time, it was not just acceptable but routine for elected officials to be homophobic and to say vile things about gay people. But it was harder to say something about people with AIDS if you knew someone’s mother, pastor, or partner who was thinking of a specific and real person.
Many of these are lessons that can be applied now and in the future as we continue to fight this epidemic.
Movements need data. As frequently as politics seem “fact-free” these days, I still think data win more often than shouting. Movements need visibility. Media have changed dramatically over the last 25 years, but it still takes a focused campaign to get seen and heard. Movements need inside political leaders. Smart and skilled Members of Congress can bypass the stumbling blocks that the process invents. And movements need humanity. Politicians will be politicians, and it matters if there are names and faces that go with the abstract problem.
Looking back from 25 years later, it would seem like the Ryan White Act was a law that was inevitable because it was so clearly needed. It was not. In the 1980s, it seemed impossible to do anything good amidst that apathy, hysteria, and hatred that surrounded the epidemic. But instead, health workers, activists, politicians, and people living with HIV and those that loved them made the impossible become inevitable.
We should celebrate that.

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