November 1996
[AIDS]
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PHYSICIAN

He treated the first AIDS cases in Boston

["Ken When AIDS started to hit Boston, the Fenway Community Health Center, with its large gay clientele, was the first to feel it. Ken Mayer was ready: he had studied community-based epidemiology as a medical student, and he'd helped set up the center's first specialty clinic, which drew many gay men to the FCHC in 1980.

Now director of the Fenway's medical research, the 45-year-old Mayer helps oversee such endeavors as Project ACHIEVE (AIDS Community Health Initiative En Route to a Vaccine Effort), a vaccine-preparedness study organized in anticipation of human trials of an AIDS vaccine as early as next year.

One in Ten: Do you remember your first memory of AIDS, or what would later become known as AIDS?

Ken Mayer: The CDC puts out an eight-page newsletter every week. I call it the Women's Wear Daily or Variety of epidemiologists. You just have to read it to know what's going on. By the time AIDS came along, people were reading it very carefully, because that's where the first reports of Legionnaire's Disease and toxic shock syndrome were. In June 1981, there was the first report. I had been hearing rumors from friends around the country, but nobody knew what was going on. In June '81, the first reports of PCP surfaced in New York, and in California, within a month, we started hearing about KS and cytomegalovirus -- illnesses associated with depleted immune systems.

Within the first weeks of the epidemic, anybody who had any training in infectious diseases thought there were two possibilities: either it was fast-lane burnout of the immune system because these people were doing a lot of drugs and partying a lot, or it was a new infectious agent. And the big question in the beginning was, "Was this something that could be transmitted between people?" For the first two years, we weren't even sure.

OIT: What was the mindset then? Were you fearful?

KM: I got pretty fearful pretty quickly. The pattern conformed to a lot of other sexually transmitted diseases. I knew that with hepatitis B, about half of gay men had markers for exposure. So I knew that we could be up against something that could affect a lot of people. It was a time that a lot of gay men and a lot of young heterosexuals were having a lot of sex and not using condoms.

People were trying to figure out what was it about this lifestyle that was contributing to the breakout. Was it anal sex? Was it oral/anal contact? Was it poppers? We organized drop-in sessions at Fenway, with a medical provider and mental health provider, and that led to the cadre of people who formed the AIDS Action Committee.

OIT: What have been some of the most significant developments in the epidemic?

KM: First was the antibody test. Finally there was a test that could say who was infected and who wasn't, and that was a major leap forward. Second, the development of AZT. Even though we know it's very, very limited in its benefit, it's beneficial. And third, we have better ways to measure the presence of HIV with the viral load test, and better drugs in the protease inhibitors.

OIT: What have been the biggest stumbling blocks?

KM: Lack of public health response to the potential gravity of the situation. At the state level it was reasonably good, but the state could only do so much. The first research grant we got was from the state. The federal government was abysmal through the Reagan administration and into Bush. I think progress was made in spite of the government, in a lot of ways. I think within the gay community there was a certain amount of denial, but in general the response from the community has been laudable. There was a real sense of having to take the bull by the horns. I don't believe there is a general public, but I think some subsets of the community in New England have really gotten it and have developed some sense of solidarity. Then there are others who have engaged in finger-pointing.

OIT: Like who?

KM: Certain quarters of organized religion. There are Jesuits who are saints, who have great mission in the AIDS community. but overall in the Catholic church, for example, there hasn't been enough work. Things are so much better now it almost feel like sour grapes to be complaining, but there certainly could've been more social cohesion. It took ACT UP to get more corporate responsibility, for example.

OIT: What about the biggest victories?

KM: The most recent therapeutic developments. We can really see a substantial decrease of the virus in the body. But it's too early to tell how hopeful we can be. Time is the fourth dimension here, and very few people have been using the protease inhibitors for more than two years.

Another victory is how AIDS has promoted the explicit discussion of sex, explicit discussion of homosexuality, explicit discussion of alternative families, explicit discussion of how racism, class issues, and disempowerment of women can contribute to spreading disease. That's something that I never learned about as a medical student, but I'm talking about it to the students that I teach.

OIT: How has AIDS affected you on a personal level?

KM: It's been pretty devastating. I'm 45 years old, I came of age in Chicago and Boston at a time when a lot of my friends were experimenting sexually and were at risk for HIV. So I've lost friends from medical school, people I trained with, some very close friends. People I had very profound respect for. Faces flash in front of me as I'm saying this to you. It's very sad. And because of the work I do, I'm very well aware of people now who are infected. I'm hopeful that they're gonna beat the bug, but we don't know that as a given. So I'm always aware of the epidemic.

OIT: Look five years down the road. What do you think AIDS looks like?

KM: I always think of what Yogi Berra said about predictions being difficult, especially about the future. I think in the next few years, immunology and molecular virology will continue to develop and will continue to allow us to develop more sophisticated ways of treating HIV infection.

Another biggie is Project ACHIEVE We really do think that in the next year or so, we will be in a position to offer a preventive vaccine trial to people. So the biggest hope would be that five years from now, we'd have reasonably effective preventive vaccines that could put a dent in the epidemic. If you're talking about white middle-class gay men in Boston, there's been an incredible amount of behavioral change. Globally, when you think about the rates of new infections in Bombay and many parts of Africa -- that's where expensive, multi-drug cocktails will never be available, but where if you have a cheap vaccine, we might be able to put an end to AIDS.


P R O F I L E S, Boston-area AIDS activists: Larry Kessler | Max Essex | Denise McWilliams |
Matt Florence | Ray Schmidt | Ken Mayer | Barbara Gomes-Beach | Brian Rosenberg

T I M E L I N E, 1981 - 1985 | 1986 - 1989 | 1990 - 1996 | The N A M E S | AIDS L I N K S


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