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Home > Countries & Regions > World > World AIDS Day 2008 > Interview: Mike Donnelly
HIV InSite Interview with Mike Donnelly

Mike Donnelly
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ACT UP Oral History Project

Heather Dron, MPH, HIV InSite: Can you tell me where you were at the start of the epidemic?

Mike Donnelly: I grew up in San Jose. Starting around 1973 I would come into San Francisco, to be part of the gay community that was forming, first on Polk Street and in the Castro. I moved to San Francisco about 1977. It was great, crazy, and amazing. I remember when the epidemic hit because at Starr pharmacy on the corner of Castro (it's now a Walgreen's), they started putting up pictures of this new thing that was happening to people.

Was that your first indication that something was unusual?

"I was aware of some people having spots, or getting sick, or getting pneumonia. All of a sudden, people who you saw on the street, that you may not have known, but just saw all of the time, all of a sudden, they weren't there."

I was aware of some people having spots, or getting sick, or getting pneumonia. All of a sudden, people who you saw on the street, that you may not have known, but just saw all of the time, all of a sudden, they weren't there. That was probably around 1981, 1982. Then it became really clear that something was happening and nobody knew what it was. I was not a scientist, just a member of the community, and my impression was "you can't catch cancer," and yet people kept on going, "well, there is cancer, there is this gay cancer." I guess I wasn't worried enough at the time. A lot of people weren't worried enough. There was the worry of, what's going on? But nobody thought that sex had anything to do with it, and because we were in the middle of the sexual revolution, people didn't want to know that it had something to do with sex. Now, when I look back, I think, oh God, I wish...

There was a big controversy about closing the bathhouses-should we or shouldn't we? I'm not sure if we knew it was a virus at that time, so we said, well no, we shouldn't. This is our place, get away from us.

So it felt like oppression or something?

Yes, and we had been oppressed for so long--so yes, don't stop our liberation. That's what the feeling was to begin with. It got worse. For me, the worst year was 1989. I'd tested positive in 1986. I had been sexually active and by that time we did know that it was caused by a virus, and was sexually transmitted. I was not surprised when I tested positive and my partner tested positive. At that point it was a death sentence. I remember sitting on the curb and crying because that was it, my life was up. Any time you got a bruise, you thought, is this a bruise or is this KS? Is this a cold or is this pneumonia?

That year, 1989, was a bleak time in the Castro. It was grey, it always seemed grey. I think the weather was grey, but the mood was just grey and the life, the vibrance, of the community was gone.

What were you working, at that time?

I was a revenue officer at the Internal Revenue Service. It was a little scary. I was not out at work yet, because there was discrimination in the federal government at that time. If you were gay, you weren't going to get ahead. I waited until I reached the top of where I was going to be, around 1989-90, before I came out. By then a few people at work knew I was positive too. I had a strange experience at work: I had blown my nose, thrown the Kleenex in the garbage, and all of a sudden there was this check missing, and this woman in the cubicle next to mine, said, "Where is this check? Let me go through all the garbage cans." She went through mine then freaked out when she thought she had touched the Kleenex that I blew my nose on. She kept saying, "I hope I don't have AIDS, I hope I don't have AIDS, I'm going to get tested right away." I'm going, "Um, it's a Kleenex, you are not going to get AIDS from a Kleenex." That must have been in the very early 90s, when we knew how the virus was transmitted. It was strange to me that an intelligent woman would freak out so badly. I was looked at a bit differently from then on. People we knew had died in the IRS. We were in San Francisco; there were a lot of people who were gay in the IRS. That was a strange incident.

Do you feel like there was a sea change at some point in the way that you felt about coming out as HIV positive?

I started AZT in December of 1989, so I guess at that time I just didn't care whether people knew or not. Yet for a while I was hiding the pills I was taking. I got fairly sick. My CD4, we called them T cells then, went down and down and down, so I was in the single digits for years and zero for a year and a half, too. I was a collection officer, I went out to people's places and worked with them. It was a stressful job. I had a friend who was sicker than I was and told him to go on disability, but he felt he couldn't because it didn't pay him enough and he had just bought a house and all that kind of stuff and then he died. I realized that I didn't have an immune system anymore, and I wanted to have one good year before I died. So I retired in 1994, hoping for one good year. I'm glad I did. That's when I got involved in the activist community, in ACT UP. An IRS client of mine saw me on the street one day and said, come to this demonstration, and I went.

"ACT UP saved my life. They had current information, and they urged you to get involved. I heard about protease inhibitors when they were in development."

ACT UP saved my life. They had current information, and they urged you to get involved. I heard about protease inhibitors (PIs) when they were in development. It was a great organization in that they supported you, but they also asked you to do something. For people who really wanted to work, it was an empowering experience. They encouraged you to learn more and more. That's how I got involved in research. They needed someone to be in the AIDS Clinical Trial Group (ACTG) and follow what they were doing. I started going to the ACTG meetings twice a year, and eventually got elected to the community group of the ACTG.

What were the primary activities of ACT UP at that time?

At that time ACT UP had split into two groups. One was dealing with social concerns and the other, that I joined, was dealing with medical things. According to ACT UP history, the first group was taken over by the "denialists," those who denied that HIV caused AIDS, whereas the medical group was working to cure AIDS, we thought. There was a big fight. The medical group didn't do counseling; we talked about what was going on. We set up a little classroom, where Rick Loftus, who is now a doctor, taught us. We had textbooks and were trying to learn. There were some very bright people, and a great network across the country, especially in New York and Philadelphia. So ACT UP was like a teaching experience. And we helped people. I remember going into doctors' offices with very sick people and saying to the doctor, "You are going to see him today." We would just sit in there and say, "You are going to see him today, he is sick." We were pushy, but we had to be. So, there was that activism, the teaching, the support, in the sense that you became part of the group and helped work on things.

Can you list some major successes or missteps of HIV/AIDS advocacy or research efforts?

I have a big bone to pick about that. At the time protease inhibitors came out I had zero CD4s. To get into clinical trials of PIs, you had to be above 50. That was the biggest mistake that companies and researchers made. I felt the researchers didn't really fight for us at all. We tried to fight, but there was nothing we could do. The clinical trials were set up so that we couldn't participate. The companies were scared.

So the argument was that it was for your own safety?

Supposedly.

In order to have a good clinical trial you had to have slightly higher CD4?

"I'm angry because some of my best friends were in the same place I was in 1996, and two of them died and I lived, and that was hard. I don't know why I lived."

Right. I don't know exactly what the thinking was. For me, the companies wanted a successful trial so that they could get a drug approved so they could make a lot of money. In that kind of atmosphere, we were throw-aways. I was a throw-away, I felt. I was pissed, I was angry, that I could not participate in this. And the hindsight is that if they would have given it to people who had the lowest T cells, they would have seen incredible climbs, incredible turn-arounds. The drugs would have gotten out to people. I'm angry because some of my best friends were in the same place I was in 1996, and two of them died and I lived, and that was hard. I don't know why I lived. I mean, they were in the same place that I was, and I felt that if they had gotten those drugs earlier then they would be alive today too, so it's an emotional thing for me. But we were left out, and I thought that thousands of people died unnecessarily because of that. That was the biggest mistake that was made. For me, it was very personal.

There are lots of successes, great successes. The thing that I marvel at is the doctors who first took care of us. They were compassionate and really wanted to solve this problem. Because everyone was afraid of getting HIV-we didn't know it was HIV--we were afraid of getting this, whatever this was, and yet these doctors--Paul (Volberding), Donald (Abrams)-not knowing what it was, still treated us. That is one of the greatest things, And their being on TV, being public, and being so open about things and calming things.

(laughs) Of course, we never knew it was going to be this much of a problem. I remember Margaret Heckler, Secretary of Health and Human Services, saying, "Oh, in a couple of years we are going to have a vaccine." It's comical now, looking back. But we didn't know how complex the virus was. We are still learning how complex it is.

The government was a big disappointment. We were gay and we were disposable. I always had that feeling that, okay, this is in the gay community right now, but this is not going to be confined to us. Open your eyes. I know there were people in the government lower down who knew this was going to be a problem, but I wanted to call this "Reagan's Disease" because Reagan could have helped so much and he couldn't even say the word "AIDS" until the very end. He knew what was going on, I mean, he was from Hollywood. There were gay actors, gay friends of his.

What are the major issues you see facing researchers and policymakers today?

I say, do as much research as possible, general research. That is what we should be funding, that is what the government is for. The more we learn about the human body, the more we can translate from one disease to another. Politicians are one of the big problems. During campaigning, they go, "Oh, look we funded this stuff on fruit flies and what good is that?" Well, fruit flies have such short lifespans, and we can learn much from studying them. All research can lead to something. What we learn about AIDS and the human immune system can be translated into a lot of autoimmune disease, cancers.

What is most important lesson you have learned over these 25 years that HIV researchers and policy leaders should keep in mind as we move forward? Is there something fundamental from this experience that can help us to proceed?

Understanding that having one condition, and focusing only on that, may not help the whole person. In Africa, for example, AIDS intermingles with TB and malaria, so you may need nets for mosquitoes as well as antimalarials. Then there was this idea that we couldn't treat people in Africa, that the drugs were too expensive. We realize now that holding back and having this disease devastate a continent was the wrong thing to do. I went to an AIDS conference in 1989, in Geneva, and I had two suitcases, one of them was full of drugs that people who had died had donated, good drugs. We distributed them. I remember this one silly policy maker saying, "Well, how can Africans take drugs? They don't have watches, they don't know what time of day it is." Having policy makers who don't think they know what other people can and can't do is important; trusting people, that they will do the right thing if it's explained to them correctly; jumping on things when we see some problem right away, stopping it early. Like when Ebola breaks out in Africa, they try to contain it.

"I went from 0 to 800; I've lived a lot longer than I ever thought I would."

HIV is going to be hard to cure. I feel that it won't be in my lifetime. I guess my body is too damaged now. When you've had zero CD4, you've lost some immunity. I still have to take PCP prophylaxis, just because I had PCP after I had reconstitution. My CD4 count is now in the 600s. I never thought that was going to happen. It's even been as high as 800, I think that was a fluke. I went from 0 to 800; I've lived a lot longer than I ever thought I would.

Do you have any comments about that experience?

The only way we are going stop this is to get the medications out there, get everyone tested. The way to stop this disease is by people not becoming infected, at least for now.

Those of us with HIV tend to blame everything on HIV. The new challenge is dealing with a population that has had HIV for years. Certainly HIV is an inflammatory disease, so your body is fighting something all the time, but we have to take into account the regular aging process, too. We are going to be different than people who are not infected and that needs to be taken into consideration.