When I first approached the administration of the Fenway Community Health Center in June, 1980 to set up a research program, I was surprised that I was rebuffed. After all, I was a gay man and an Infectious Diseases fellow at Brigham and Women’s Hospital, and presumed they would welcome my free offer. The Executive Director, Sally Deane, was very gracious. She told me that the clinic was used to local academics swooping in to grab samples, and not doing anything to better the community. She suggested that if I wanted to help, perhaps I could set up a weekly walk-in clinic to help them diagnose and treat difficult infections, like aggressive cases of viral hepatitis and anal warts. I took her advice and found my weekly sessions taught me as much as my stint in the lab.
Back in the day, people interested in infectious diseases eagerly perused the Center for Disease Control’s Morbidity and Mortality Weekly Reports, which I thought of as epidemiologists’ Women’s Wear Daily. MMWR was where the first reports about Legionnaire’s Disease and Toxic Shock Syndrome first saw light of day. So, I took particular notice when their June 5th issue described several cases of atypical diseases showing up in “avowed homosexuals.” The common thread of the reports was that they were describing diseases was that previously were mainly seen in people with immune system dysfunction, either due to genetic mutations, or more commonly, due to chemotherapy for malignancies or immunosuppressive treatment to protect organ transplants. A month later, there were more cases, and soon the world realized that it was dealing with a new epidemic. The leadership of Fenway went from guarded mistrust to encouraging me to develop the infrastructure to conduct research. They recognized in those early days that no one knew the cause of the heterogeneous array of malignant assaults on cadres of (mainly) young men, and how to protect oneself from getting sick.
Fast forward several decades, and we have highly potent and well-tolerated medications that can effectively control or prevent HIV. The numbers of new infections and deaths have significantly decreased, but are still considerable, 1.3 million new HIV infections last year, and more than 600,000 deaths in people with HIV. One of the major breakthroughs in recent years was not scientific, it was the public health leadership of the George W. Bush administration in supporting programs to make HIV medications available to millions of people around the globe. With the therapeutic advances and the commitment of resources, many of us began to see a light at the end of the tunnel, even in the absence of effective vaccines or cure.
Unfortunately, the events of the past year and a half have placed all of these advances in peril. The Trump administration’s defunding of HIV care and prevention programs globally has meant that millions of people are now at risk of serious illness and death. The defunding of research programs deemed politically incorrect by Robert Kennedy’s Department of Health and Human Services threatens the ability to learn how to implement best practices to ensure that those who can benefit from these highly effective medications can actually access them.
In the earliest days of the epidemic, many of us felt that we were dealing with a tragic but untenable, situation. It felt like being in an endless battle, with no effective tools to fight back. Since those grim days, unprecedented progress made many of us feel that the tide had turned, and that new infections and untimely deaths would be prevented. The tragedy now is that we have the tools to control this serious epidemic, but political ill will, caprice and apathy are seriously impeding our efforts to control an epidemic that has already resulted in more than 40 million deaths.
Kenneth H. Mayer, MD
Medical Research Director and Co-Chair of The Fenway Institute