Profiles - Larry Kessler

November 1996 [AIDS]

AIDS CZAR

He lobbies for education, compassion, and money
When you think about AIDS and Boston, Larry Kessler's name comes to mind almost immediately. As one of the founders and the first and only executive director of the AIDS Action Committee, the 54-year-old Kessler has been on the frontlines of the city's battle against the epidemic since the beginning, and shows no signs of giving up the fight anytime soon.
Although he is hopeful about new treatments, he fears that AIDS is far from over. "The average epidemic lasts 25 years," he says. "It either burns out or some kind of cure or treatment is developed. In 10 years, a lot more people could become infected."
The committee, which started meeting as a project of the Fenway Community Health Center in November 1982, incorporated in 1985. It is now the region's largest provider of AIDS services.
One in Ten: Can you recall your earliest memory of AIDS?
Larry Kessler: I think it was the ABC News account [in 1981] talking about this gay-related cancer. I remember seeing that and thinking, "That's odd." And I remember thinking that it was product-based, or some sort of environmental thing that was particular to the gay community.
When the first cases occurred in Boston, they occurred among people who weren't from the area. One was a guy from Iowa, and I knew some people who were friends of his. He had visited them over the weekend, and a week later he was dead, of this rare pneumonia. And then similar stories started surfacing , and I remember thinking, "This is not a regional phenomenon. If it's happening in New York, and it's infectious, then it will happen in Boston."
OIT: What was the mindset? What were people thinking the disease's future might hold?
LK: We didn't know it was a virus. People started getting highly anxious, because they started having friends who got symptoms. Some of the symptoms were psychosomatic, but they lasted. People were sick for weeks, or thought they were sick. And then there were people who really were sick, and they were usually the ones in denial. They would be walking around losing weight, having night sweats, fever, diarrhea, and saying, "It's just a bad flu." Then you'd hear about them being in the hospital with pneumonia, and sometimes they'd live and sometimes they wouldn't.
OIT: If you had to name some of the biggest stumbling blocks that you and others have faced, what would they be?
LK: I think the inability to talk about sex, or anything to do with sex. It's absolutely amazing to think that we use sex as effectively as we do to sell things, but we have horrible communication skills around it. The government doesn't want to talk about it; families don't want to handle it; churches pooh-pooh it.
The other stumbling block is homophobia. This disease was initially so associated with the gay community that a) people didn't have the language to talk about it, b) they didn't care, and c) it wasn't their problem. So there were problems with the way the media, the scientists, the CDC, etc., talked about this disease from day one that put other people at risk.
We had clients that weren't gay, and they were dying even quicker than gay people because doctors said, "Well, you can't have this, because it's a gay thing." They were under-treating it, under-responding. One doctor told one straight guy, "Go home and have some chicken soup, you'll be fine in the morning." He called me, and I said, "Are you feeling better?" He said, "No, my fever's really high. I'm feeling worse." And as he's talking, I could hear the rattle, the crackling noise in his lungs from the pneumocystis, and I said, "You have to go back and go to the emergency room and ask to be admitted. You're not going to live until the morning if you don't." He did not go back. He went the next morning, and he died the next night. Pneumocystis at that time could kill you within 18 to 36 hours.
OIT: What have some of the victories been?
LK: One of the victories is that no one's ended up in a concentration camp. We don't have leper-type islands. There were lots of proposals all over the country most of which were killed through activism and lobbying and logical thinking. We've been fortunate in Massachusetts, where we have the oldest Department of Public Health in the country. And throughout the epidemic, we've had three good people heading it. To date, this department hasn't been politicized to the extent that it has in other states. This department has made an attempt to work with the legislature, to say, "That's not good public-health policy. We won't support that bill." In some places, they have the Department of Public Health advocating for some of these crazy bills. I think we're out of the woods on that kind of stuff, unless the nature of the disease really changes, which is a possibility.
OIT: Do you think Boston has distinguished itself, been different in any way, from other cities in the way it's responded?
LK: Yes. Part of it has been, as I said, our Department of Public Health. And the other thing is having public-health schools and Harvard teaching hospitals that are so involved in research. People like Marty Hirsch and Jerry Groopman always saw the connection to social services, housing, and support. So they weren't threatened by groups like AIDS Action. It still doesn't work that way in New York, the epicenter. There's still no relationship between some of the hospitals and GMHC [Gay Men's Health Crisis] or some of the other agencies. At some hospitals in New York, they're still leaving food out in the hallway instead of going into the room. I can't imagine that happening here. If it did, we'd swoop down immediately. It's horrible to have AIDS. But if people are going to have it, it's best to be here, San Francisco, or Seattle.
OIT: It might be difficult for someone in your position to separate the personal from the professional, but how has AIDS affected you personally?
LK: That's the toughest question. This epidemic has so consumed me that there's large gaps in my life that I don't remember. Maybe it'll come back later. It was moving so fast that I don't remember a lot of the '80s. I don't remember what songs were in, what movies were out, where I was half the time, because I was doing 18 hours a day on AIDS. The '90s are a little bit better, because I've learned to pace myself. But it's a little scary, because I sometimes can't believe the '80s are gone. Where did they go?
The quilt thing this year, too. I started off being skeptical. But as it got close, I knew I had to go, because I could feel this grief in me, all the way up to my chest. The minute I walked around the quilt, I lost it. I was able to go to total strangers' quilts and read them, and 40 people would pop into my mind. And I'd go to the next, and another 20 would pop in. And then I'd get to one and think, "Oh my God, I forgot he died." Between the viewing of the quilt, the candlelight march, and the healing ceremony at the National Cathedral, I was able to get rid of that cat that was hiding in my lungs. I haven't been able to do that often. I remember going to a service in 1988, five years into the epidemic, and totally losing it the last half-hour of the service. And when the service was over, there was a puddle on the floor. I had never seen that before.
OIT: When you look at AIDS in the future, five years down the road, what do you see?
LK: I'd like to be able to say that we'll see it as a chronic condition. We probably still won't have a vaccine, and we might not have a cure, but at least we'll have a treatment. I hope it's a treatment that is more accessible to everyone. Part of the problem now is that some people who are trying this treatment have already built up resistance to AZT. The other thing is, maybe we'll be crippling the virus, reducing its effectiveness to overcome the immune system again. That would all be good news, but it would be expensive news. I still would recommend that people take precautions, however, because no HIV is still better than treated HIV.
Around here we've noticed a dramatic drop in the death rate [among AAC clients] in the last six months. It's gone from 10 a week to about five to seven a week. In the last two weeks, it's been one a week. So that's great news. The bad news is that the number of new clients seems to be climbing like crazy. One of the other questions, too, is what happens when somebody is ready to go back to work. To the person with HIV, that's a major life question: do I really want to put myself under that stress again?
OIT: Getting a new lease on life isn't necessarily easy.
LK: We don't adjust to change easily, even if it's change in the most positive direction. One guy said to me, "My mother was so geared to me dying, she can't deal with me living now. I'm an older person now, and she's treating me like a newborn." Or lovers who are hanging on because they think, "Well, he's gonna die." And now, it's like, "Oh my God, he's going to live. What do I do now?" We've asked the hotline workers to start writing down all these challenges. We hope we can get a better grip on what the future looks like. And we must continually remind people who don't think AIDS is going to be an issue for them. We've got kids ages 12 to 32 who think AIDS is somebody else's issue, an old person's disease. And that by the time they get sick there'll be a cure. And I really want to say to them, "Don't be so cocky, because that may not be true."

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