When AIDS first appeared among gay and bisexual men in most U.S. urban centers in 1981-82, the first diagnosed patients were near death from multiple opportunistic infections and a previously rare cancer called Kaposi's sarcoma, and their immune systems were totally nonfunctional due to the lack of any CD4 lymphocytes, the "conductors" of immune response to infection.
It was immediately clear to epidemiologists at the CDC (the Centers for Disease Control and Prevention) that this was the beginning of a rapidly expanding epidemic among gay/bisexual men as they received requests for orphan drugs that were needed to treat one of the most deadly opportunistic infections—pneumocystic pneumonia—previously seen only in terminal cancer patients and other seriously immunosuppressed patients.
While the CDC rapidly put together a large team to investigate the potential causes of AIDS among the first 200 reported cases using staff and investigators already familiar with the sexual and other practices of urban gay men from their just completed multi-site studies of sexually transmitted hepatitis B and the efficacy of the first hep B vaccine among gay men, the National Institutes of Health did not issue its first request for proposals to study the natural history of exposure to whatever the causal agent(s) of this escalating epidemic until 1983, by which time AIDS was turning up among intravenous drug users (IDUs), recent Haitian immigrants and even newborn children.
I am proud that—as a co-founder of the first gay community health center in the United States (now known as Howard Brown Health Center) and the Chicago PI (principal investigator) of the hepatitis B studies—the proposal written with colleagues at Northwestern University to begin with the men who participated in those earlier studies for whom we had quarterly blood samples and sexual histories going back five to seven years was chosen as one of the proposals that were united to create the Multicenter AIDS Cohort Study (MACS). It was also the only one based within a community health center rather than in the university that provided the laboratory and specialized clinical research investigators required for determining the cause of a newly identified fatal condition of unknown etiology.
How does one begin to describe the return on investment of what has turned out to be arguably the most productive HIV longitudinal observational studies in the world? Return can be measured in terms of published papers (2,000 and growing); years of semi-annual assessment and biosample collection (30 and still going); and the hundreds of genetic and pathogenesis studies around the world that have relied on those samples and the rich collection of clinical, longitudinal, behavioral and diagnostic data associated with each of those samples
I prefer, however, to measure return on investment in terms of the brave and dedicated participants who came forward to join the original MACS recruitment in 1984. Many of these men have never missed even one of their 60 and counting semiannual MACS visits. Others have gone on to either volunteer or work for HIV service and prevention organizations in their local communities. Some have been so impressed by the dedicated work of investigators, staff and volunteers of the MACS that they have changed their careers to work in HIV research, treatment, support or prevention themselves.
To me this is the most significant return on investment of the MACS as it matches the incredibly successful advances in turning a rapidly fatal mysterious illness targeting an already stigmatized and feared group of men mostly living in shadows into a treatable chronic condition that may possibly be eradicated and has contributed to the increased visibility and acceptance of LGBT men and women worldwide.
What is now needed is a new MACS focusing on younger African-American men and women who are currently experiencing rates of HIV infection and prevalence similar to white gay men in the early 1980s, a horrible health disparity that continues unabated and will only be solved when the U.S. government recognizes that shining the light of a targeted nationwide net has the best chances of changing the stigma and fears that still keeps younger African-American men and women from seeking HIV education, testing and effective linkage to the support and care desperately needed.
David G. Ostrow, MD, PhD, LFAPA, is founding PI and behavioral investigator of Chicago MACS, Northwestern University; and director of research, David Ostrow & Associates.
