After watching desperate friends and acquaintances self-medicate with alternative therapies and black market drugs, Martin Delaney formed Project Inform in 1985 to share information and accelerate advances in treatment for people living with HIV/AIDS. Here he explains how his original intent was to collect data on whether the medications people were buying in Mexico were helpful or harmful, but he quickly realized patients with life-threatening illnesses, particularly AIDS, weren't being served by the government's normal drug approval process. Delaney and his organization pushed to have AIDS patients take part in clinical trials of new drugs and at one point, held their own controversial clinical trial of an experimental drug outside of the FDA process. Several men died in the course of that trial, although Delaney points out that people die in all clinical trials and that a study of the same drug by the University of California San Francisco had similar results to his group's study. He also talks movingly about how the AIDS epidemic has changed him and estimates that 80 percent of his friends have died. "It's very hard to rebuild friendships," he says. "I'll be 60 years old by the time this interview runs, probably, so you end up living your life without the people around that you thought you were going to spend it with, the people that you had in the early part of your life." This is the edited transcript of an interview conducted on Dec. 4, 2004.
- Some highlights from this interview
- Why he started Project Inform
- Project Inform's experimental clinical trial
- The need for a faster drug approval process
- How AIDS has changed him
Can you cast your mind back, and describe the atmosphere of dread, I suppose, in the gay community as this new and unknown disease took hold?
I think the atmosphere in 1981, '82 was both one of dread and terror, because we didn't know what it was. You just knew that there was something out there that was stalking people, and the scientists, the doctors all seemed mystified by it. It wasn't clear at that time if it was related to sex or to food or what, but the bottom line was we saw people starting to die horrible deaths and didn't know why. It was really focused within our own community, and I can't think of a worse fear.
Did the fact that there was no known cure make it more terrifying?
The fact that there was no cure to it really drove the terror, because we didn't see anyone getting sick and then getting well as you would with other diseases. You simply saw people at what we now know was the end stage of disease. … One day you'd see a sudden loss of weight, 20, 30 pounds. Shortly after that you'd see Pneumocystis pneumonia, and about half of the people would die [of] that, and the other half would be dead within nine months. And there were no alternatives to that, except the other manifestation, which was the Kaposi's sarcoma, the cancer. But both of them ended in the same place.
Someone said to me, the Castro [district in San Francisco] in those days, you'd see the walking dead as they were going up and down the street.
Yeah, the Castro, sort of the middle '80s onward, really looked like the sick ward of a hospital. You saw people in wheelchairs. You saw many men walking around with canes and many people with what we then in those days called "the look" -- gray, loss of weight and wasting syndrome. The fun that the Castro used to be was gone, and now it was like walking in the graveyard. ...
It's said that desperate times required desperate measures. Tell about some of the treatments people had tried.
Over the years, the desperation of the epidemic led people to try just about everything, certainly starting with the clinical trials, the things that the university was working on; there was a lot of stuff done there. But we've seen some of the more, how would you say, alternative approaches that have ranged from boiling the blood outside the body to magical infusions of animal cells and things that used to be done down in the Tijuana, Mexico, area.
We've seen any number of unknown concoctions, where people would just come out of nowhere and claim to have something. Because people were so desperate, they were inclined to believe it. All it took was a testimonial, someone saying, "I took this, and I feel better," or this happened or that. ...
As strange as that sounds, any glimmer of hope was better than none. We used to have a saying in those days that there was no such thing as false hope, that there was only false hopelessness. But I think in retrospect, certainly some of the things we dabbled with were false hopes. ...
How did this health crisis become a political issue?
I think AIDS was a political issue from the very start simply because of the lack of response to it. There was no research money for AIDS in the early years. There was no real response. The only place where we saw scientists work on it was because of personal interest, where they'd move grant money from one thing over to this. We're lucky that some of them did that. But there just wasn't any willingness on the part of the government to deal with it until almost the late '80s, middle to late 1980s.
Why was that? Why that reluctance?
Certainly we had our own views as to why that reluctance was there. The most common perception was that it was because this disease was associated with homosexuality and sexual behavior, and this was during the Reagan presidency. It was the first time in a long time that we have very right-wing voices manning the controls of government.
We certainly heard rumors of people saying, "Let the gays die," or, "This is a gift from God. Let's not contest it. Let's just ignore it." On the outside, it certainly looked like that's what they were doing.
You don't really believe Reagan and his Cabinet were saying that, though, do you?
I don't know about Reagan himself. I'm probably willing to suggest that maybe he didn't because he was so detached. But I have heard from physicians who attended meetings in the White House itself, where they worked with people who worked in the White House who said those kinds of things. I can't say that it's just our imagination.
… Is it just an unfortunate coincidence that just when something happened that needed public money pumped into it, it came in at the same time as the government that was ideologically, instinctively opposed to that kind of approach?
Well, to some extent, there was bad fortune in the timing, because the Reagan administration really did set out with the intention of shutting down the CDC [Centers for Disease Control and Prevention]. They felt that all infectious diseases had been identified. But it should have been obvious by 1981 or '82 already that that wasn't the case, that that was a mistake, that it was an error.
So no, I don't think it justifies in any way the lack of action. I think there was something more deliberate than that going on. ...
... What we originally set out to do, myself and my partner, Joe Brewer, [my] partner in the project, was to study the phenomenon of people who were self-medicating with some of the drugs they could bring in from Mexico. By the 1985-'86 era, some drugs were starting to be put into clinical trials at the National Institutes of Health, and some of those drugs you could buy over the counter in Tijuana or any other Mexican city. It simply made sense to an awful lot of men affected by the disease to get down to Mexico on the weekend and buy those drugs.
Now, our question was, is this helping them, is it hurting them, or is it just a waste of money? That's what the original project of Project Inform was about, was to try to collect data on that question.
But what did that quest lead to?
Well, the quest really led to several new realizations on our part. One was that the medical community didn't want a bunch of laypeople messing in medical matters, so it became very difficult for us to raise funds to do the original project. But even as we worked in that area, we moved from doing the research to at least providing the information of what was known about these drugs. As we did, we quickly came into conflict with a number of government agencies. We ran into conflict with the Border Patrol over the rules for getting things into the country, and we ran into conflict with the Food and Drug Administration, which was establishing those rules.
It really demanded, on our part, a response to the regulatory concerns. It struck us as very clear and very simple that people with a life-threatening illness should have a different rulebook than people in general when it comes to accessing new drugs. We didn't thinking somebody getting a new hair remedy, Rogaine, should necessarily get accelerated approval of a drug, but certainly people who were facing a life-threatening illness ought to have access to those experimental drugs, and that was an argument we had to take to the FDA. ...
It's implicit in everything you say, but just in your own words, convey the sense of, I suppose, separation that must have existed among the people. …
The urgency is just driven by the fact that when people went to their doctor in those days, the doctor could only say: "I have nothing for you. We have nothing we can do for you, and what we know of this disease is simply that you're going to die sometime soon."
Our message was, to patients from the doctors, get your things in order, because your life was going to end. That's the framework in which people began to make these decisions about accessing experimental drugs. They said: "Well, that's a dead-end choice. I'm willing to go another direction if there's even the small possibility that 10 percent of us or 5 percent of us might benefit from these things."
Nothing to lose.
Nothing to lose. ...
Who was Larry Kramer, and why was he so important in the history of AIDS?
Larry Kramer was a playwright and a screenwriter working out of New York, and a very angry man as he saw his friends start to die from this disease. Like a lot of us, he got involved. He created the Gay Men's Health Crisis group in New York and went on his own after it.
What Larry did, and which I think is so important, is through his creation of ACT UP [AIDS Coalition to Unleash Power], he created a vehicle by which thousands of people could get involved in fighting and expressing themselves over these issues, the kind of things that I was doing and a few others of us.
They were very important, but we had access. We could talk to the government people; we could get in there; we could make our case and our arguments. But that was just a few of us. What Larry did was create a channel by which thousands of people can join that process.
Are you making the distinction between the inside influence and direct action?
Yes, it is the distinction between direct action and inside influence, and we had to have both in those days. We realized that quite quickly; that on the one hand, if you just had the inside influence, you were just a few people trying to talk to someone, and maybe you'd have a good conversation, but you didn't have a lot of muscle behind you, whereas [what] Larry and ACT UP did is they created the muscle. The muscle also needed people on the inside. The two of them played off each other. For government officials it was, "Hey, talk to us or deal with them."
It was perfectly effective, and I don't think they realized the fact that we were obviously coordinating all of this, that we knew each other, we had the same plans, and were often the same people. ...
Paint me a picture, if you like. What kinds of things would Larry Kramer's organization be doing while you were smoothing into Washington? What was he doing?
Well, around '87, which is when ACT UP was formed, most of its direct actions were sort of large, dramatic, public events, such as a march on the FDA in which tens of thousands -- actually, I think probably hundreds of thousands of people were there. They frequently had die-ins, which were very dramatic things where people would suddenly drop when the cameras were running, and then others would come and draw lines around the bodies, and as the people got up and left, you saw this carnage that was symbolic of the people dying of AIDS.
Another time, [founding member of ACT UP] Peter Staley and some of the folks of ACT UP unfurled a huge banner in Wall Street, inside the Board of Trade. These were things that were designed on one level to get media attention, but also to make a point. It brought out all the cleverness and artistic abilities, sometimes, of the people within ACT UP. …This was the beginning of AIDS treatment activism…
With hindsight -- it's a genuine question -- do you think that those demonstrations were effective, or do you think they alienated Middle America?
I think overall the demonstrations were effective. They weren't aimed at pleasing or displeasing Middle America. I don't think anybody involved thought or cared what Middle America was going to think about it. They were effective in putting public pressure on governmental officials; there's no question about that. The last thing government wants, whether it's this president or the last one or any president, is public scenes attacking, criticizing them.
It was also, I think, very healthy for the people themselves involved, because it took a lot of people from a place of despair and helplessness into a feeling they could do something about it, that they could fight back, that there was something more than just laying there and dying that they could do. ...
Word leaked out about AZT [zidovudine] before the studies had been completed. Tell me the story and what happened.
Originally AZT was called Compound S, and it was moving very quickly through the drug-approval process. The early reports were rumors of people getting up from their deathbeds -- you know, fairly dramatic stuff -- coming from sources in government as well as nurses and people in the hospitals where the testing took place. It led up to a first, what they call an efficacy trial, which was really a test to see if it worked or not, and this test was cut short at six months. It was supposed to run for a year or longer. But at six months into the trial, there was a dramatic difference between the group who got AZT versus the ones who didn't. So government announced the end of the trial, said: "This is a great success. Hallelujah! Aren't we wonderful?"
The problem is that story didn't hold up too well on close examination, because as we then began to follow people in longer-term trials or even continuing that original trial, you saw that as another four months or six months went by that the death rate came much closer together again. There was at best a very short-term improvement from this single drug, and it was a great disappointment.
What is the double-blind, placebo-controlled system?
One of the issues that we fought about at various times was this question of the double-blind, placebo-controlled trials. A placebo's just a fake pill, sugar pill, something that looks tastes and smells like the real drug, but it's not. So half the group is going to get a placebo; the other half is going to get the real drug.
The double blinding is this: Single-blind would mean that the patient doesn't know what he's getting, whether it's real or not. The double-blind meant not only did the patient not know what he was getting; neither did the doctor who was giving it to him. The purpose of that was to weed out any bias on the part of the patient or the doctor. ...
Of course it was very unpopular, because it meant that some people were going to go through the whole course of this trial thinking they're going to be getting a drug when in fact they were getting fooled. They were getting no drug, and if they only had six or eight months to live, then they had just wasted, in a sense, in that trial. That was a contentious issue. It was hard for the community to learn.
I think that as hard as that is, and ugly as it is, it's also in many ways a necessary thing. There aren't any really good alternatives to it that still give you an answer. The question today, though, is, should that be the kind of thing you do with people who are likely to die in the next year or so?
I have no problem with double-blind, placebo-controlled trials in people who have time to live. The question is, is it ethical to do that when somebody is on the last legs of their life? Certainly my belief is no, it's not. Those people should just be given the drug, and the trial should be ... done in other people. ...
Did you succeed in getting this approach [to the] policy changed?
Oh, yeah. There was a great deal of pressure from the community over these things. I remember one particular article that ran in the local gay press here which was an article called "Murder by Placebo," was the title of it, and it had quite an impact on people.
But there's a price to it, too. I mean, I'm glad that we changed it, but it also meant that it's harder to get the information than out of clinical trials about how well a drugs really works, particularly in that sickest-patient population.
There's no free lunch here. If you fix one problem, you tend to create another one.
You appeared in a public television documentary very actively supporting an experimental drug called Compound Q. What was your thinking then, and do you think you were right now?
Compound Q was a drug called trichosanthin that was being developed by a company by the name of the Genelabs here in the San Francisco Bay Area. Initially we didn't know much about it, but we quickly learned that the scientists at UCSF [University of California, San Francisco] who were working with it felt really strongly about it, that it offered a new and perhaps better approach to the disease. Instead of just fighting with the virus, it was designed to kill the infected cells. ...
What frustrated us was, as we looked at the UCSF process, it was going to be a very long, slow, agonizing development cycle, because it was a completely new and different kind of drug. It was going to go slower even than AZT and ddI [didanosine] and those did.
It doesn't take a genius to run a clinical trial. We had seen enough, and some local docs said, "All right, we will work with you, and let's do the trial ourselves." The drug could be brought in from Mexico.
We did the best we could [on] quality assurance of it and ran those trails. The purpose of the trials really wasn't so much to get the drug licensed, but it was to show that you could do this more quickly. We went ahead with it, and there were problems, as there are in every clinical trial.
Would I do it over again? In the end, we had a fight with FDA over it because we didn't go through them. Given the context again, I would do it again. Given the context of today, of course not; it's a different world. It's pretty hard for me to answer that question, except to say that in the context in which we made those decisions, I think we'd make the same ones all over again.
It seemed significant that the FDA made no attempt to interfere with that experiment. ...
By that time we had pretty strong relations with the FDA. We had come to trust them in a number of ways, and they had come to trust us, that we weren't crazy lunatics. I think they were pretty shocked by that trial and the degree to which we went outside the system. But we met with them; we had lawyers in if we needed them. We sat down with the head of the division and the commissioner, and we worked on an agreement, which was that the trial would be taken over by UCSF and finished that way. We had been criticized at the time because of some of the side-effect problems that occurred in the trials, and I understand why people felt bad about that. There were people even who died in the course of the trial.
But we had to point out that people die in the course of all of these trials. And as quickly as UCSF got into doing the studies, they had the same problems we did, so there wasn't anything really all that different between what we had done and they had done except that we did it faster.
... [Did you worry about] raising false hopes and then the crushing disappointment that must have followed?
Well, it's tough. If I go back and look at the videotapes from that era, I was always careful to say, "We don't know whether this works or not." I did reflect the hope that I think the local scientists were giving us about the mechanism of action involved, and it's a mechanism people are still pursuing today. But the point is correct that it's hard to be enthusiastic about something without creating the potential of false hope. On the other hand, do you want to just never give people hope? It's a dilemma, and that's the way we paced that dilemma, at that time, in that context.
... What was the absolute crux of the issue between you [and the FDA]?
I think the crux of the issue was whether or not individuals with a life-threatening illness should have to wait for the normal completion of the drug-approval process or whether it might be possible, given their dramatic need, to allow them to have access to an experimental drug and to do it in a way that didn't interfere with having clinical trials.
We were trying to have it both ways. The scientific community was afraid that if we allowed this access, people wouldn't volunteer for clinical studies. That was their big fear that drove their own opposition to it.
But I had the opportunity to present this at the Infectious Diseases Society [of America] meeting in 1989, I think, and then debate it with one of the leaders in the scientific community. We got across the point that people enter clinical trials for reasons other than desperation, and that in fact you don't want desperate people to be in clinical trails. There's 100 reasons why that's the wrong population for a clinical study. As we made that argument and emphasized the need for clinical trials to take part in, [to include] people who lacked that short-term desperation, we won over a lot of the scientific community. I know we won over Anthony Fauci of the National Institutes of Health with that. He wrote me a note out of the blue saying, "I had read your article and heard the speech that you gave there." And he says, "You know, I think you've got a point." From there on, he really became a powerful ally in making that change.
What are protease inhibitors, and how did they change things?
Protease inhibitors is another class of drugs. There are several ways you can interfere with the replication of HIV. It has sort of a life cycle in the body in which it first attaches to a cell; then it injects its genetic material into it, and it turns on the genetic material of the cell and creates new copies of the virus. Well, each of those steps is a potential place that you can interfere with by chemical means.
The protease enzyme, which is one of those steps, and it comes near the end of the cycle, just before the virus is going to pop out of the cell -- a new virus is being made. So protease inhibitor is a drug that inhibits, that stops that from happening, so that what comes out of the cell, rather than an organized, functional new copy of the virus is a bunch of jumbled genetic material.
That was the new class of drugs that came on stream in 1995, 1996, and they represented the most powerful effect against the virus that we had yet seen.
What actually happened?
It also led to some problems, as these things always do. Yes, they produced really dramatic results. For the first time we saw viral levels in people becoming what they call undetectable. Of course the public tended to view that as meaning the virus was gone. It didn't; it just meant it was down below the level at which our current tests could detect, but it was still there. ...
We really did see what they call the Lazarus effect, a lot of people who were too sick to work, just flat on their back, suddenly gaining weight again, feeling strong, healthy and returning to work. It was sort of a miracle era for many people. ...
It was a leap forward, but it led to, I think, a lot of confused interpretations. A lot of people began to feel that it meant we were on the verge of eradicating the virus, that it might just be another small step. As a consequence, tens of thousands of people who were still quite healthy and didn't have bad T-cell levels or viral levels in their body began taking the drugs.
In the process, what everybody seemed to forget is these drugs came with serious side effects. By 1997 we had a heck of a lot of people taking drugs they didn't need to take and suffering from pretty severe side effects for having done so. Very unfortunate. ...
Did anyone close to you have a Lazarus effect?
Oh yeah, yeah. Certainly people close to me had that effect. I think you'd be hard pressed to find anyone who lived in San Francisco here who didn't know somebody who had that kind of a response.
But I want to emphasize not everybody had such responses. There were certainly some who just didn't respond, others who had the wrong balance of side effects and that. But everybody saw people really getting better, and by '97-98, the AIDS wards were closing down in the hospitals. Where there used to be a whole floor at many of the hospitals, there was now a bed here and there. People weren't in the hospital anymore. ...
… For a person living with these drugs, what it's really like? What actually happens to them?
Well, there's really two main areas of problems that come with the protease inhibitors, especially in the early days. One was that they were very difficult to use. For example, Crixivan [indinavir] was the most popular one, but it had to be taken three times a day, eight hours apart -- not just three times a day but eight hours apart, and it had to be taken with eight glasses of water. Despite that, a lot of people still had kidney stones as a side effect. Kidney stones was one of the side effects that came up early on.
What we call a local lipodystrophy began to show up, which was large redistribution of body area. We would see people developing huge humps in the abdomen; some developed humps at the back of their neck. Women developed enormous breast growth to the point where they needed surgery sometimes to correct it. Other people had the opposite of lipodystrophy, which is what we call lipoatrophy, where they would lose the fat, like you would see all the fat disappear in the face and the limbs, even though their body weight didn't change. It was a frightening return to the "the look," as we called it, back from the early 1980s.
We also see a series of changes that suggests there's going to be increased problems with heart disease as time goes on. We know that people are having trouble with diabetes brought on by the use of the drugs. We've known for some time of problems -- they're called peripheral neuropathy, really painful nerve damage that happens. There's a long list of potential problems.
I don't want to say that everybody gets those. That's the problem. You say this, and everybody thinks, oh my God, who would want to take such drugs? Well, not everybody had those. Some people take these drugs and don't have any of those side effects; some people have them but to a mild degree; and some people have them to a severe degree, so much so that they can't use the drugs.
There's an attitude abroad which says, well, AIDS is effectively solved or contained in the USA; it's time to focus on the absolute catastrophe in the Third World. While I'm sure you don't oppose that, do you have slightly mixed feelings about that?
Yeah, many of us have mixed feelings about the shift to sole focus on the international problem of AIDS. Certainly everyone recognizes there's a huge problem, probably that certainly the greatest health crisis in history is going on in developing nations. But it's a mistake to think that the problem is solved in the United States. Say in the best case circumstances, where you've got people who were on the drugs and doing well, that's fine, but there's no guarantee they're going to be about to make it through the rest of their lives that way. As we watch over time, more and more of them still get sick and develop resistance.
But much worse than that, in the United States, there's a huge population of people who don't have access to these therapies and the miracles of modern medicine. They're too expensive; there's a lack of government funding for support programs; and there are just plain too many people who haven't gotten tested and don't know they're infected in the first place. To drop the ball in the United States here will absolutely rekindle the epidemic and make it worse here than it has ever been, and there is indication that that's already happening.
How have drugs in general changed? Have they improved?
The biggest change in therapies for HIV over the last five or six years has been the simplification of therapy. If you go back to the 1996 era, when we first got effective cocktail drugs, as they call them, one of the biggest problems was it was difficult to use. People were taking handfuls of pills several times a day. Today therapy can be reduced to so much as a single pill taken twice a day, and there are plenty of regimens where it's, say, two pills a couple of times a day. Great improvements have been made in simplifying the regimens.
We're moving into new classes of drugs. We've had the first of a class called entry inhibitors. These are drugs that block the virus from ever getting to a cell in the first place. We have one of these, and there are several more of them coming down the road over the next couple of years. We hope that those are going to be a major improvement and a reduction in toxicity and side effects. Those are, I think, the biggest changes: it's simplifications, some lowering of side effects and the addition of new agents.
There are roughly 20 drugs available for AIDS right now, and people might think, well, isn't that enough? No, it's not enough, because every one of them eventually develops resistance, and you have to have a constant stream of new ones coming on.
You talked about the different styles of activism of people who worked from the inside and people who would be demonstrating outside. Could you tell us exactly what was happening during the huge demo outside the FDA in 1987? Where were you?
The demo in 1987 at the FDA is actually a great example of the difference in the styles. On the one hand, you had thousands of people out there demonstrating at the FDA, making a lot of noise, and media cameras covering it, getting great attention for the problem and creating enormous public pressure.
At that very same moment, I was in the Old Executive Office Building across the street, meeting with the chief counsel to the president, to the first President Bush at that time, because he had communicated to us, he had seen our work and said that the president had an interest also in accelerating the FDA approval process, and could we talk?
I was over there kind of doing the inside job and talking about how we could do it without endangering people and what changes could be made or what we thought needed to be made. It was a great day in the sense that we had both of these things going on at the same time.
What's your own take on President [George H.W.] Bush's administration and his approach?
I have fairly positive feeling about President Bush the father, his handling of AIDS. It was clearly more responsive than what we saw in the era of Ronald Reagan, and it was really the time when we first began to see large amounts of government funding and attention being given to the issue. You might say, in a sense, the normalization of AIDS finally was taking place, and it was really getting you some serious funding. To some degree I don't think that would have happened without President Bush Sr.'s support for it.
I wish I could be as positive about President Bush the son, because it's a very different thing. On the one hand, the good things that he's done is they've committed an enormous amount of money for the problem of AIDS in Africa. They have at least not yet made major cuts in the programs here, although they have failed to keep up with the growth. The problem is that the largesse of the current Bush administration is coupled with a whole package of demands, in the sense of particularly the religious right, that now prevention has to be about abstinence, and it has to tell people what's wrong with condoms.
Overseas there's problems between how the money can be spent on generic drugs versus patent drugs and debates over the patents and how they should and shouldn't apply. Everywhere we go with Bush the son's administration there's a political agenda that overlays it that we have to deal with, and a lot of it are things that we don't like.
Having said that, they won the election. ... We're on the outside now, and I think we have to learn to deal with that. We can't just sit here and call them names and say, "You're bad people, and you're doing it wrong." We have to find where are the places we can find common ground and try to influence them where we think they're wrong. ...
We haven't talked about President Clinton. What's your final verdict on him?
I think Clinton frankly was a great president and overall did very good things for the country and his relationship with most of the world. Admittedly there were some other problems. But when it comes to the issue of AIDS, I'm not as enamored of Clinton as some folks would seem to be. The real advances that took place in AIDS during his administration, such as the development of the protease inhibitors, things like that, that stuff was all in place before he ever got there. It would have happened no matter who was president, so I don't think he can claim any of that.
He had eight years of control, and on the issue of AIDS in Africa and developing nations, it seems to me they did absolutely nothing or next to nothing. As much as we want to be critical of George Bush and how he wants to spend the $15 billion and the religious baggage that comes with it -- yeah, I have problems with that, too, but at least he's put the $15 billion on the table, and I didn't see that happening in those eight years. It was almost as if AIDS didn't exist in Africa in those years, and I think that's one of the reasons we're paying such a high price now. ...
Clinton got burned on a few things he tried early on and probably felt this one wasn't going to work for him politically. I don't applaud him so much over that. On the other hand, he's doing it now. You've got the Clinton Foundation, and I think he realizes [he has] some debt to history that he has to pay on this.
In terms of complacency, it's a very bizarre phenomenon. It must be a tiny minority, but there's this situation where there are young gay men almost courting AIDS, to whom it's almost like an honorable wound. ...
Yeah, some of the things that are happening with younger gay men are really kind of difficult to understand, and a little bit scary, certainly when we talk about people who almost flirt with the notion of being infected, romanticize it. I don't know if that's as big a phenomenon as the media has made it out to be, but obviously there's some people there.
Probably the biggest problem that we're facing in the younger gay community is the epidemic of crystal methamphetamine use, the speed drug that people [take and then] they stay up for days at a time, and basically it removes sexual inhibitions. They're literally up for three days at a time. It is clearly connected to further spreading of the disease, and this has really got to be confronted.
On the other hand, I'm not one to stand up there and say, "Naughty, naughty, you shouldn't do that." Our generation certainly played with a lot of drugs, too, as have other generations. So the question is, how do you get them to understand the seriousness of this threat?
Our generation got to a point where we understood it because we had buried so many of our friends. Every one of us -- take who was at our dinner table in 1983, and then look at that same table in 1986, and you'd be lucky if half of them were still there. We learned from burying our friends the seriousness of this disease. The younger group hasn't had that experience. In fact, AIDS is a very abstract thing to them. All they know is sometimes that you get it and you take a bunch of pills, and it seems like it's not such a big deal.
It's a huge challenge of prevention work today, to get folks to understand it really is a big deal and that the price of the crystal meth epidemic is one that could lead us right back to where we were in the early 1980s.
Speaking personally, you talked about the dinner table in 1983 and 1986 and now in 2004, '05, '06. What has it cost you?
I would say 80 percent of my friends are gone, about 80 percent. There's really just a few people left that were part of my inner circle of family in those days. Even of those, most of them are HIV positive; they're just the ones who successfully worked their way through it. There were times in the early 1990s where I swear that not a single day would go by in which someone I knew somewhere in the country didn't die. ...
It's left me probably a lot lonelier person than I was. I mean, it's very hard to rebuild friendships. I'll be 60 years old by the time this interview runs probably, so you end up living your life without the people around that you thought you were going to spend it with, the people that you had in your early part of your life. It's meant for a lot of us devoting our lives to this work, because how could you not do so? I say that as I look at others out there, those who aren't doing so. How could you not fight something that was destroying everybody you knew? That's the choice many of us made.
Sometimes we're criticized as AIDS careerists, they call us. Well, believe me, the career I had before this paid a lot more and was a lot easier. I would much rather not have to have an AIDS career, you might say, but this is what fate has given us. This is the story of our lives.