Thirty years of trials, failures, leadership, and inspiration

Thirty years ago the global health landscape changed. Young gay men were suddenly being diagnosed with diseases previously seen only in individuals with weakened immune systems. What emerged as unusual patterns of disease in 1981 quickly escalated into the AIDS pandemic.

A recent article in the New York Times, “30 years in, we are still learning from AIDS”, looks back at the emergence of the disease, and the obstacles we still face today. Of course, the past 30 years has also brought considerable progress—progress that would not have been possible without the dedication of countless researchers, scientists, physicians, nurses, auxiliary health professionals, including health educators, ethicists, and, last but certainly not least, activists.

Today, we’d like to share the stories of two inspired and inspiring leaders who changed the face of the pandemic during those early years. PRIM&R was privileged to have both as keynote speakers, and their humanity, determination, courage, principles, and remarkable impact affected all who were in attendance.

In October 1992, Jonathan Mann, MD, MPH, spoke at AIDS Clinical Research and Care: Meeting the Challenges of an Epidemic in Flux, a conference sponsored by PRIM&R and the Tufts University School of Medicine.

Dr. Mann was, by all accounts, a unique leader in the fight against the pandemic. As the founder of the World Health Organization’s Global Program on AIDS, he confronted the disease with unparalleled passion and zeal. Dr. Mann did not simply seek out the biological causes of the disease; he advocated for a more holistic understanding of AIDS as a human rights issue. When he spoke at PRIM&R in 1992, he shared this message:

“It has become increasingly clear that to work against AIDS, regardless of whether in the laboratory, the clinic, or the streets, is to become, to some extent, a revolutionary, or, if you prefer, an activist. A revolutionary because in order to achieve the goals of the work, whether to make a vaccine which will be available to the world’s population in need, or to ensure care for those who need care, or to prevent infection through sex education, or even to conduct research on sexual behavior. In all these ways, our goals and the concrete needs of people require changes in the status quo of society, in our approach to AIDS, and more generally, to health.

Thus, even more than changes in the face of AIDS epidemiology, it is our understanding of AIDS that has changed. AIDS is the first health crisis to be seen and understood and felt as global. Our new global AIDS strategy is more than about AIDS, it is part of a deeper, more fundamental struggle: whether health, a central concern of all peoples, will or will not become a central, defining principle guiding national and global purpose.

Around the world, AIDS has drawn forth people who are not over health issues which are already clear and evident. We need leadership to give voice to the deeper, deeply felt but often inarticulate desire for health; to help give shape to the global groundswell. Imagine what it would be like to live in a country with a real health policy. Imagine what could be if health and human rights were placed at the center of debates about community, national, and global purpose. Just imagine what real global health leadership could mean for problems like drug abuse, the environment, and AIDS.”

The full text of Mann’s speech can be found here. Sadly, Dr. Mann was on Swissair Flight 111 when it crashed off the coast of Halifax in 1998. His commitment to human rights and to fighting AIDS endures, and we are all richer for his extraordinary life and body of work.

Another leader in the fight against AIDS was C. Everett Koop, MD, ScD. As Surgeon General of the United States under President Ronald Reagan, Koop was at the helm during the early days of the pandemic. Faced with the decision of how to educate Americans about the disease, Koop made what was at the time a difficult decision: to talk directly to the American people. In 1988, Koop was responsible for sending a pamphlet, Understanding AIDS, to every US household. In a recent article, “The early days of AIDS, as I remember them”, Koop shares his reflections:

“The first phase of America and AIDS, from the first cases in 1981 until the AIDS report in 1986, was marked by mystery, fear, suspicion, judgment, the unknown. The second phase, and the time where I made my contribution, saw health officials overcome considerable opposition—some misguided, some mean-spirited—to at last bring the facts of AIDS before the American people: in the AIDS report, the AIDS mailer, and the hundreds and even thousands of articles and television programs about AIDS.

The press did a commendable job of communicating the issues of AIDS. The American people learned that except for babies who got AIDS from their mothers, except for innocent sexual partners of AIDS carriers who took no precaution, that in order to get AIDS you had to engage in risky behavior, behavior that many Americans thought illegal or immoral in addition to being risky.

And in that second phase of AIDS, Americans sorted through the issues of testing, discrimination, and civil rights, and in general rejected the bad laws and approved the good ones, assuring people who did not practice high risk behavior that they were protected from the disease, and also in general protecting the civil rights of those who contracted AIDS. But the disease, the epidemic, continued to grow in American society, claiming more victims each month. And so we entered the third phase of America and AIDS, the phase when the society, the health care system, and probably each American will have to come to grips with people dying of AIDS. But with a formerly acute fatal disease becoming chronic and some AIDS patients living out their hitherto normal life span, being burned in effigy doesn’t hurt a bit. Each of us must keep HIV/AIDS from becoming the forgotten epidemic.”

The full text of Koop’s article can be found here.

In 1998, Dr. Koop spoke at Hospital, Health Care Professionals and AIDS sponsored by PRIM&R, the American Foundation for AIDS Research, the American Hospital Association, and the American Public Health Association. He was a larger than life figure in every way back then, and nothing has changed. He is 95 years young, and still actively involved in a range of health-related issues.

Both Mann and Koop were early leaders in the fight against AIDS. While their contributions were different, both left an indelible impact on the way that we understand and communicate about the epidemic today. As we consider what the next 30 years might bring, we must look toward today’s leaders in the disease– the researchers, the scientists, the physicians, the nurses, the health professionals, the health educators, the ethicists, and the activists.