Laura Pinsky

Q: Do you want to start with how you first get on the AIDS committee? It’s really far back, 1985, so anything about the beginning of that.

Pinsky: This was shortly after I was hired at Columbia, because I started there, I think, in February of 1984, at the Counseling Service. I was the so-called liaison clinician with the role of seeing people who had medical illnesses with psychological aspects or people who had psychogenic illnesses. So I spent much more time getting to know the primary care part of the Health Service instead of just the mental health part.  I worked on women’s health issues and organized an abortion counseling training program.   Richard Carlson was the head of the Health Service, and he appointed me to the University Task Force on AIDS.  I had already started seeing people who either, had AIDS, or were concerned that they might be infected, the worried well as we called them at that point. I wanted to educate myself, so I read and I did  some counseling on the GMHC hotline, I was appointed to the committee, and went to a meeting of the queer group on campus, then called Gay People at Columbia.  I thought that they should be involved, because they were the people most affected

I can remember the room that I met people in, it was in Earl Hall. There were about ten people in at the meeting, most of whom became part of GHAP.  My belief was that the people who would most directly feel the impact of AIDS should be the one making the rules, not some bureaucrats.  Gay People at Columbia agreed.  I met Paul Douglas and Michael Dowling and Bruce Francis and Kevin Hall. They were involved in starting GHAP.

Q: There was champagne.

Pinsky: [laughs] Yes, at the first meeting there was champagne. And I guess you have a list of people who were there, as much as we could figure it out. I don’t remember how we made contact with Eric Rystrom, I think he was a psychiatry resident at St. Luke’s.  In 1984, 1985, there was very little information for patients who wanted to understand their own illness. One of the things ACT UP did was to provide a model for how people should be educated about their disease so they could make informed decisions. And I have to say, to boast a little, we started working on that before anybody else really was .GMHC was primarily doing service to people with AIDS and safer sex education, rather than focusing on the medical information available.

I think it was also influenced by Paul Douglas, who was a science person. He was a graduate student in the artificial intelligence department, he had studied math at Harvard. And he was brilliant. He was capable of understanding technical material and he was also a very thorough person who liked to understand things entirely. Eric, the doctor, started to try to teach us about the immune system and some basic stuff about HIV. The immune system is enormously complex; somebody made a joke to us at one point that in medical school they can let students see the exams from the year before, because immunology changes so much year to year that the answers change. And it was way above our heads, but we started learning some rudimentary concepts and we also started learning a lot of the epidemiology because that’s mostly what there was to talk about at the time – who was at risk of getting infected.

One of the first things we worked on were [ “floor raps”], and we always called them ”FLERPS”.  We would go into the dorms to speak and we had a videotape that we showed. It was set to music by Tracy Chapman and it was about a student with AIDS at a California university. At that point, our dorm talks were to set up to teach people about safer sex, and about the already proven facts that casual contact did not transmit AIDS. We also wanted to let people know they could come to us for information and support.  People were so anxious about casual contact at that point. What we focused on was teaching people about how the CDC tracks transmission and about the household studies that had been done proving casual contact did not transmit AIDS. We really mastered those arguments. You do have to understand that people felt very comfortable being AIDS phobic in 1985, and this was conflated with anti-gay feeling, because it was also still pretty acceptable to be homophobic in 1985. So some of the people who were super anxious about casual contact were anxious people, people with OCD, people who were hypochondriacal, and some of them were people who were just bigoted against gay people and saw it as a gay disease, and felt free to make untrue and discriminatory statements. Of course, whether we knew who they were or not, some were men who had sex with men and were rightfully scared.  We answered a lot of questions mostly along the lines of “But what if someone bleeds and you have contact with their blood?” And we had these usual routine lines that we would say, “There needs to be contact of blood with mucous membranes or broken skin, but we suggest that you don’t put your hands in a pool of someone else’s blood anyhow, for many reasons.” And we would explain routes of transmission and we had a very good response.

You probably noticed that I have been talking about transmitting AIDS, not HIV. This is because, at the time we started, HIV had not yet been determined to cause AIDS.

Paul Douglas, Michael Dowling and I spoke a lot on campus, at sororities, and various kinds of student groups.  We did basically the same thing, the risk reduction stuff and the epidemiology stuff, a basic AIDS 101, we talked about the infection damaging, the immune system, explained what T-cells were, and talked about opportunistic infections.

Anyhow, I think, if I have the timing on this right, we did the initial round of HIV testing, before we were on the AIDS committee. Paul knew he was positive by the time he was on the AIDS committee. For some reason, he always thought he was positive, and thought he knew who infected him with HIV. He had this postcard up on his bulletin board from this guy who was kind of a California surfer and the guy had written on it, “You are my destin, D-E-S-T-I-N” meaning destiny.  Paul kept it on the wall because he thought it was ironic, that this was the person who had infected him.

Donald Kotler is a much esteemed gastroenterologist at St. Luke’s Hospital who has worked on HIV since the beginning of the epidemic and has done important research on HIV and the GI system. He came to us because he had done some prior study using Columbia students and he was looking for controls for a study he was doing on GI issues in people who had AIDS.  The HIV antibody test had been developed, but this was before the test was officially approved by the FDA. We recruited people from GHAP and Gay People at Columbia. And it was very, very, very scary. Because there was nothing to be done, but some people wanted to know, a lot of people in GHAP wanted to know if they were infected. ,

I think that we tested ten people. And at that point I think it took us maybe two weeks to get the results back, at least a week. So we got the results back and only one was positive, the rest all negative, Gerard  Ilaria who was very active in starting GHAP was one of the people who thought he was infected because his lover had AIDS (and later died) and he found out he was negative which was wonderful. One person was positive and I told him he was positive. I don’t even really remember our conversation; the whole thing was traumatic.

Paul was surprised when he was negative. And then two days later Kotler called us and said they made a mistake and had reversed two results. It was Paul who was positive. .And so I went back to [the person who falsely tested positive] and told him he was negative which was fabulous. I told Paul I needed to talk to him about something and I went over to his apartment and told him he was positive. He was my best friend and it was awful. He just wanted to be alone.

Fairly shortly after that, HIV testing was approved and we started offering testing to the Columbia community. We didn’t have any formal counseling plan worked out, but that’s when we were in the stage of “Are you sure you want to live with this? Can you deal with the psychological stress? Have you been depressed in the past? Are you suicidal? What kind of support will you get? Is there anybody you can tell?” We did have a doctor working with us from the very beginning, a guy named Craig Metroka, who was an early HIV expert, so we always had somebody to whom to refer students.  However, early on it became clear that some opportunistic infections could be prevented, so we thought that there was a good reason for people to be tested and get a lot of medical and psychological support if they were positive.

But we did the testing for quite a long time through Kotler’s lab. We would see patients; they would go over to St. Luke’s and get their blood drawn by his wonderful, assistant, Anita TKTK. Then I would get the results back and I would let people know whether they were positive or negative.

So the passion about our work came from the fact that the issue was not abstract. Gerard’s lover was dying, we knew Paul was positive and soon we knew a number of other people who were.

We were freaks about anonymity, for good reason, because at that point there was a lot of discrimination against people with HIV. This at a time when people with AIDS who were in the hospital had their food trays left outside of their room because staff were scared of getting AIDS. And there was a lot of job discrimination and insurance discrimination, so we were fanatic about anonymity.

Let me tell you about the University AIDS committee. I’m not sure of all the people who were on it. Dr. Carlson, Paul Douglas, myself, Kendall Thomas, who was a law school professor, and a guy who was the dean of the engineering school.

Q: Is that Neu, N-E-U?

Pinsky: No, Neu was a public health person. Another person on the committee was Roz Fink who was the university counsel, and I don’t remember who else. …

Q: And Mullinix?

Pinsky: And Mullinix was the head of the committee. And he was the vice-president of the university and he had worked for the defense department and was very, very smart. I think that the issues in the committee are encapsulated in some of the documents that you have. The University wanted to protect itself legally, wanted to make sure no one could sue them for discrimination, or for allowing someone to expose someone to HIV. They were covering their asses and they didn’t want to do anything more than what the law required. And we wanted the AIDS policy to serve the interest of people who were infected. We had this idealistic idea that we could have something written into the policy that would help provide services for people who were HIV positive and protect them from discrimination. So, we and the administration were sort of coming at it from opposite directions.

Q: So the committee’s purpose was to write a policy

Pinsky: An AIDS policy. And you’ve seen some of the notes from the meeting, Paul and Kendall and I became, intensely involved in the politics of the whole thing. For example, they put forward a draft that said something like “HIV is probably not transmitted by casual contact” and we’d have giant fights in the committee meeting about that the word “probably” because that was already a proven fact. I was very abrasive on the committee but it felt so important to me. And I I don’t even know if there is a university policy on AIDS. I don’t know what really came out of it. In the process of doing this, Paul Douglas and I, along with a GHAP founding member, Michael Dowling, wrote a pamphlet on the basics or AIDS. I think it was called the Columbia Handbook on AIDS, you have that right? This was the first version of a book later published by Simon and Schuster and very widely distributed in the US (hundred of thousands of copies) and translated into other languages. That was called “the Essential AIDS Fact Book.”

Q: Yeah.

Pinsky: In the process, we learned an enormous amount about HIV. At that point, you had to read everything in hard copy – no internet. So we got the health service to get us a subscription to Morbidity and Mortality Weekly Report, which is the CDC newsletter/journal., The Journal of American Medical Association, the New England Journal, the Lancet, and some others. And we would breathlessly follow every story about HIV. At this point, Paul, and Bruce Francis, I and some other people had started renting a house in Fire Island Pines in the summer, and that led to Bruce’s joking fear that I would scare boys away by lying on a beach blanket reading “Morbidity and Mortality Weekly Report”. But we spent really a lot of time studying and learning and we ended up doing talks for GMHC also eventually.

Two things I should tell you about the tenor of the times. People who were HIV infected at that time had an average time from infection to time of death of ten to twelve years. That’s the average, although we were testing people positive who didn’t know when they were infected, so obviously some people had been infected for at least a few years,  already had a decimated immune system and died sooner.  What I so want to convey, and I don’t know if I can, is this: people knew that when you hit two hundred CD4 cells (and further decline was sometimes rapid) you were vulnerable to serious opportunistic infections. Below 200 is the point when you get Pneumocystis carinii pneumonia (PCP) and that’s the disease, it’s still the disease; most HIV-infected people get first. A number of other diseases appear when T cells are below 100, like toxoplasmosis, and progressive multifocal leukoencephalopathy, CMV, and many others.

Q: Cryptosporidiosis?

Pinsky: Yes.  There’s a whole list in the book. We used to talk about ARC, AIDS related complex, which was the period before people hit 200 where people would start to have skin problems, like rashes,  and GI problems, and they would know they were on the skids.

Q: And that was Kaposi’s sarcoma as well?

Pinsky: Yeah, KS. And people could get KS when they had a higher level of T-cells. But people don’t die of KS until it affects their internal organs.  HIV infected people were mostly could only watch their t-cells decline and prophylax against some OIs.  Everyone who was infected   was obsessed by whether and how fast the disease was progressing.  We were always trying to look for something optimistic. You know like, “oh look your t-cells went up by ten” when we knew that this didn’t mean anything. But every t-cell drop would be an occasion for depression. There was a perception of unstoppable progression. Infected people and their friends were trying to say to themselves  “NO, maybe something will stop this, maybe something will stop this.”  I can’t say that I ever felt, felt fatalistic about it exactly, but it   felt  that if you did enough and you learned enough, and were activist enough, you could stop that from happening. I mean, whether consciously or unconsciously, there was that feeling. Gerard saw his lover die died fairly early on.  His funeral was held at one of the few funeral homes that was taking people with HIV, people who died of AIDS, at this time. There was major discrimination in funeral homes.

Q: They just wouldn’t accept the bodies?

Pinsky: Yes

Q: What medical treatment existed for people who had been diagnosed, or tested positive, at the time?

Pinsky: Well, when was AZT approved?

Q: AZT really started being used in ’87, because that was ACT UP’s first big thing, then the cocktail and protease inhibitors were ’95.

Pinsky: Fairly early on, the first positive advance was that you could prevent certain specific infections. And the main one to prevent was PCP, with a very common antibiotic called Bactrim (sulfamethoxazole trimethoprim). An available antibiotic could prevent people from developing PCP. So we felt, felt that OK, it’s worth having people should know their status so they could be on prophylaxis, if needed. There were other opportunistic infections that could be prevented with drugs in people below 100 T cells.

GHAP at the time was more democratic, for better and worse, in the sense that I didn’t demand the final say on anything. We fought things out and there were a lot of personality conflicts, a lot of big scenes. It was all probably silly but we were talking about non-silly issues such as what to tell people about testing. We also were very, very careful from the beginning, and this is a GHAP tradition, to talk about the way we approached things psychologically. I am a therapist, Paul was in analysis, and Gerard was a social worker.

Michael Dowling was very active in the early days, and he was a public health student. He was one of the main people who developed GHAP. And we worked very hard at crafting language.  For example, instead of saying, “Don’t have intercourse without condoms” we would say “Have intercourse with condoms.”: When we wrote the Handbook, we wrote it  to be read by everybody but tried to write  from the point of  view of somebody who was HIV infected. Most information was written in language that would imply that the reader wasn’t positive; the positive person was “the other.” We never had the idea that one size fits all in terms of responses to things. How people responded to being HIV positive was not just, ok you’re HIV positive X, so this is response Y, but that the experience was filtered through people’s social situations and particularly through people’s psychological makeup. I think the thing about dealing with very serious illness is that you have to think about issues of defenses: any kind of defense that helps you get through the day is fine as long as it doesn’t cause you to engage in behavior that is self-destructive or hurts others. So if somebody was not talking about their infection, but going to their doctor and taking their Bactrim for PCP and using condoms, and managing OK emotionally, you don’t necessarily want to push them to think about the fact that they had AIDS. From the beginning, we tried to train the advocates about how to talk to people (counseling skills) and not making facile assumptions about other people’s lives and experiences.  A lot of health education material is imbecilic. It’s almost always written from this cheerful, sex-positive

Q: Sanitized.

Pinsky: Sanitized, but non-psychological point of view.  We didn’t want to do that. We wanted people to think about getting tested and then we wanted to give people support after that. Our first priority was the people who were infected. . We tried to learn as much as we could.  Our second priority was educating people to follow risk-reduction guidelines and to be less bigoted against people with HIV and AIDS. We wanted to do actions that could affect people We spent time  learning the science so we could y follow the research that was going on.

Pinsky: There was, obviously a hope that medication would come along that could stop HIV. AZT did come along and it made a huge difference. However, it was initially given at much too high of doses and was very toxic and, it was being given to people late in the course of illness.  We now know that people would develop resistance on a single dose regimen. AZT got demonized as the enemy by a certain group of people. A lot of the initial information about the epidemiology and science of HIV came from a New York magazine called the New York Native, which started out being a very good source of information, but became increasingly crackpot and actually ended up being part of the HIV denialist movement. A lot of people thought “AZT is poison” – that was the big phrase of the day. People saw friends getting sick from side-effects and they died anyhow. The real truth is that some people stayed alive enough longer to get on the next available medication., Paul and I went to speak to an went to some academic group down at NYU, some group of queer, academics and we gave a talk about why we thought people should be tested (to get prophylaxis and possibly AZT), and we were torn to shreds. [They said] it was horrible for people to get tested and know and there was nothing to do about it. But that was wrong, because even if AZT was not helpful, prophylaxis against opportunistic infections was. If you suggested that people should take AZT you would some times be screamed at. You know, it was very, very emotional for people.

The other thing is that these remedies that didn’t work used to become popular with different people. There was a doctor who, I’m forgetting his name but it’ll be on the conference tape, who thought that Naltrexone might be useful. It’s a drug that’s used to reduce alcohol cravings. Or there was a drug called AL721, which was, discovered in Israel and it was a combination of lipids, of fats, somebody had done some research that showed it had some positive effect.  It wasn’t officially available but you could get it on the black market and through buyers’ clubs which had been formed. It was this gross stuff you had to mix up in a blender with other stuff, it was absolutely putrid. And lots of people tried it for a while, but it turned out to have no effect. People kept it in the freezer, and there used to be a while when. If you moved to a new house in the Pines, you would open the freezer from last year and there’d be these little packets of AL721.

Q: Oh God. [laughs]

Pinsky: [laughs]. So there was this sense of waiting and waiting and waiting for the next possible hope.

There are principles that have continued throughout GHAP: one is to work to understand information and not to give people over- simplified versions of reality. The other is to approach issues  with a psychological perspective and to understand the sociopolitical context of the disease. I understand why sometimes educators want to reduce things to simplistic slogans but we were dealing with Columbia students, who, along with many others, could understand complexities. But we also we had to learn that just because somebody was capable of understanding the science didn’t mean they wanted to. And people would be very different. There would be people who would become as expert as their doctors and people who really didn’t want to know, didn’t even want to know what their t-cells were.

So, somewhere along the way we started a support group at Columbia, that went on in many iteratio9ns for a number of years. It was very hard because most of the people in the group died eventually. There was a gay student who was infected and he was from a very right-wing Christian fundamentalist family in Florida, He started getting sicker and sicker. And eventually he had to go home to his family because there was nobody else to take care of him, even though they had basically told him that AIDS was a punishment for of his satanic behavior. It was horrible. S

People talked about how scared they were and what they could do to fight the illness. One of the things that were popular for a brief time was drinking your own urine. I don’t know why but people would do that. Or people wanted to believe that, if they ate a perfect diet and exercised all the time and get enough sleep, then I won’t get sick. And basically, that’s not true.

I’ll tell you about a few people that I remembered. There was an African-American undergraduate who got it, found out he was totally closeted, and had grown up with his religious grandmother I think. He got really sick, went home, and died quite quickly. And the newspaper, the Spectator ran it as “Columbia Undergraduate Dies of Liver Disease.” He never told anybody, I think, except me, that he was HIV infected. There was another undergraduate named Ross Johnson who was beautiful and on the swim team He came to Columbia and found out he was positive and I saw him for a long time; he was terrified. And he died. Somebody that I remember really, really well because I saw him for a long time, was this wonderful guy named Chris Hill, who was just graduating from law school and starting to get really sick. And I saw him for him for a long time, I saw him through, maybe his last year and a half of law school and after he graduated. And he, at that point, ,  he signed up to take a writing course or something, so he could keep his Columbia insurance, and he saw the doctor we had through Columbia.  He was a charismatic guy. When I met him he was already getting sick, bu. He was super super smart, incredibly nice, and he just slipped away. And towards the end I used to go to his apartment to, to see him. One of the last times I talked to him, I remember it so well, we were in his apartment, and it was a sunny day. There was a lot of light coming into the apartment, he was very sick, he was bed-bound and he started to tell me about his romantic and sexual exploits when he had been, as he put it, in the game. He had so much fun telling me stories. We were just laughing about things, things and it was the most wonderful escapist conversation ever. And he died pretty shortly after that. And then his lover died a few years later.

We tested a woman early on. She became infected from a bisexual guy. She has survived the whole epidemic and has a teenage son. She and Paul became very close. When Paul was desperately sick, she had just had her baby and Paul dragged himself up to the hospital to see her baby and congratulate her after he was born. And she said to me when I saw her last year, I definitely would’ve killed myself except for him. .

If you walk on to the Columbia campus, from the 114th Street through the gates next to John Jay –, and you look to your right, you’ll see a tree with a plaque sort of hidden in the bushes It was planted and who was married and had kids and had been on the down low or whatever the Jewish version of that is. I saw him for a long time. And that tree was planted in memory of him. When I walk by, I often think of him and the tree is three stories tall at this point.

[Break.]

Pinsky: So, it felt bigger than anything. You know, I was seeing a lot of people who were positive I got involved in the gay community, because, because at that point it was very politically progressive and I think I was attracted to that. I had gone to Barnard and been arrested in the 1968 demonstrations.  The more I did this work, the more I became involved in the gay community. The more I became involved in the gay community, the more I knew people who had HIV, so it sort of took over everything in a certain way. I had a very good friend named Charlie Barber who graduated from the Columbia School of the Arts r who died in 1993 and I was one of his “buddies.”  –, People used to form teams to care for people who were sick, and doing practical things for them. . The gay community did an amazing job of taking care of its own at that point.  And everything connected to the epidemic, was affected by political policies and it was charged and it was very passionate. After we put out the handbook, the public health school got a call one day from the head of Pocket Books, Simon and Shuster, saying “we saw your handbook and we’d like to publish it for the general population.”

Q: This is the handbook the AIDS committee came out with?

Pinsky: Yeah, which Paul and I had written. Which, the public health school initially said “Oh yeah, we’ll do that” but they actually hadn’t written it so they had to contact us.

Q: [laughs]

Pinsky: So we expanded it and it turned it into, the first version that was commercially published. And we worked many hours on the language to use, and where to get accurate information and how to convey it, and it ended up selling hundreds of thousands of copies. It used to be in supermarkets. It got translated into a lot of languages.