The Age of Aids [home page]

interview: mervyn silverman

[photo of Mervyn Silverman]

Dr. Mervyn Silverman was director of San Francisco's Department of Public Health when the first AIDS cases were reported and later became director of American Foundation for AIDS Research (amfAR). One of the most significant incidents during his tenure in San Francisco was his battle to close down the city's bathhouses -- a position the gay community vociferously opposed. Here he recounts those arguments and expands on his own position that the bathhouses were a unique public health hazard. He also talks about his contributions to Ronald Reagan's first public speech on AIDS, and his disappointment at the speech that Reagan ultimately delivered. Silverman calls AIDS "the most political disease" he's ever experienced, from the restrictions on prevention and education pushed by Sen. Jesse Helms (R-N.C.) in the '80s, to the funding of abstinence-only programs in the Bush administration's $15 billion AIDS program, to government denial in Africa and China. "Without question, politics has been one of the driving forces in the spread of this disease," he says. This is an edited transcript of an interview conducted on Dec. 2, 2004.

What was your position in the '70s, early '80s, and how did you first come to hear of the thing that was later known as AIDS?

I became director of health in San Francisco in 1977. In 1981, literally probably within a week or two of the Morbidity and Mortality Weekly Report [MMWR] put out by the Centers for Disease Control that had this new information about five previously healthy white gay males who were showing signs that seemed to indicate an immune deficiency without any pre-existing condition that would lead to that -- what that did was alert physicians to the fact that, "Wait a minute, the people that I'm seeing in my office that I'm confused about, this sounds like the same kind of thing." In all cities, but especially in San Francisco, but in Los Angeles, where this happened, and also in New York, Chicago, all of a sudden physicians started calling the local health department saying, "I think I have a patient that fits that description."

Probably, as I say, within weeks of that article coming out, we started getting calls here at the Health Department in San Francisco from local physicians, physicians primarily taking care of white gay males, who were seeing these things. They were reporting to us, and we started then to keep records. ...

As a layman, the MMWR reports said four or five guys are pretty sick. There's more than 200 million people here -- no big deal. But that's a signal to people like yourself, is it?

Four or five may have been just an interesting medical anecdote, but in fact, when the calls continued to come in, then you say, "Wait a minute, this is not an isolated occurrence." Obviously, there is something going on, and that's especially important in the public health setting, where a communicable disease obviously starts with one person, then another, and you start to see this growth like a tree, spreading out, all the branches.

Of course what we did after a while was talk to the individuals, get their histories, and then we started making linkages: Well, this person who seems to have this problem had a relationship with that person, who we also have gotten a report from. ...

I think we will have to have a vaccine if we're going to solve this problem, because if we leave it to human nature, it's not going to work.

Did you have any idea how bad this was going to get? At what point did you start to feel afraid, did you have a sick feeling about this?

Well, nowhere did I ever believe that we would have something that has affected 60 million, with now over 40 million people living with HIV/AIDS. That was totally off the radar screen. We knew that it wasn't going to stay neatly focused. Epidemics don't stay neatly packaged in any way, so we knew it wasn't just going to be a problem in the gay community. Of course what happened, we started seeing transfusion-related, vertical transmission from mother to child, and so it became very clear that this was something that was going to spread. ...

Now, as a public health officer, were you surprised at the idea of an epidemic breaking out within the gay community, or was this actually an accident waiting to happen?

... Sexually transmitted diseases were very significant in the gay community in San Francisco. When I arrived here in 1977, the City Clinic, which is primarily a sexually transmitted disease or STD clinic, was packed to the gills. You could barely get in the door. There were not only new infections but repeated infections, so sexually transmitted diseases were something that the Health Department and the gay community were working together on long before I got here in 1977.

It was not surprising that something could have occurred as a sexually transmitted disease. However, gonorrhea, syphilis, most of the diseases that we see generally today are not killers. There was something different here. This wasn't just a sexually transmitted disease; this was a killer sexually transmitted disease.

... To what degree did this disease spread as a result of prejudice against gay people?

Whenever you have a marginalized population, the chance of spread of disease is very possible, because, by being marginalized and being discriminated against, people generally don't come forward, at least not in the early days of a problem, to bring forth this, because by coming forward, you are announcing your status in society. ...

Was there a feeling in the community at large that these people, so to speak, had created their own problems, that it was almost like a punishment, that they deserved what they were getting?

... People talk about guilt and innocence. If you were gay, you were guilty of getting AIDS; if you were a baby, you were innocent. Of course everyone at that time was totally innocent, because no one knew that this thing was percolating, if you will, through society. This virus was spreading in the early '70s, very likely in San Francisco. We only saw the manifestation in the early '80s, so everyone at that point was innocent. The reason I stress that is [today] people are engaging in unsafe behavior who know better, and that is not innocence. I don't know if it's guilt, but it's certainly not innocence.

... You said the virus was spreading in the '70s but didn't show until the '80s. Explain what you meant, why that was so devastating for pubic health officials.

Everybody is fearful of Ebola. You see it. People are bleeding from all their orifices; their eyes are bleeding; everything is bleeding. But that's actually a simpler disease to deal with, because you see the problem almost immediately. You can quarantine or isolate that person, and the problem will slowly end.

With AIDS, you have a silent period. You have a period on average of 10 years before anyone has any meaningful symptoms or signs. During that 10 years, you're walking around with a virus that you are able to spread, and you're doing so unknowingly. And ... whether your partner is sexual or is sharing needles and syringes, your partner is unaware. Everyone is unaware while this is, if you will, percolating, this is bubbling up, and so this makes it a very, very difficult thing.

With HIV and AIDS, we have a number of things. Not only is it that there is a silent period, but almost every epidemic we've ever reviewed in history ends by the immune system overcoming a weakened microbe; then all of a sudden, the critical mass is reduced, and the epidemic ends. In this one, besides the silent period, it also has the ability and does go to the immune system and destroy the very system that hopefully would end up ending this epidemic. Every aspect of this is much more difficult.

What makes it actually easy, in one sense of the word, is that you have to go out of your way to get this. You're not going to get this by shaking hands, by being breathed upon or coughed upon. We could sit here talking about the flu, and everyone could learn everything there is to know about it. They walk out, shake hands, and someone sneezes on them, they have the flu. Unless you place yourself at risk -- unprotected sex, shooting up with needles and syringes that have been shared, or having a tainted blood transfusion -- you are not going to get infected. So in one sense, it seems very simple: All we have to do is get you not to do A, B and C, and you won't get it. The trouble is getting you not to do A, B and C is one of the most difficult things we have in public health to do.

... What were the clues that showed this was not a gay plague?

... In public health we know that epidemics don't stay neatly packaged in little categories, and so we knew pretty well -- we weren't sure how it was going to spread, but we were pretty sure it was going to be others [outside of] the gay community. In fact, in San Francisco, a baby was born infected; a heterosexual woman was infected through heterosexual sex. It became very clear that we had something that was much broader than just dealing with the gay community. ...

[Who were the activists you were dealing with in the early days?]

The early activists in this disease were HIV-positive gay men. They were fighting for their life. This was not just something to go out and rabble-rouse just for the fun of it. These people really felt their life was on the line and that what the Heath Department did, what the Food and Drug Administration did, what the administration in Washington, D.C., did truly affected whether they were going to live or die. ...

What makes it such a horrible death?

Most people had Pneumocystis pneumonia as one of the defining illnesses, opportunistic infections associated with AIDS. The difficulty breathing, the pneumonias that these people had were very debilitating. There was also what in Africa is referred to as slim's [or slim] disease. These people were wasting away. Their nutrition was suffering; they were weakened.

When I arrived in San Francisco, the Castro district, which is the primarily gay area of San Francisco, was a vibrant, dynamic place all hours of the day and night. By the early to mid-80s, it was funereal. There were people walking hunched over, ashen-gray, walking with canes, purple splotches. The best, only way I could describe it is funereal. With the advent of combination therapy and protease inhibitors, it's back to a very dynamic community, but there was a definite change. I mean, people were going to memorial services once, twice, three times a week. People were dropping literally like flies in this city. ...

Tell me about Cleve Jones.

Cleve and I were friends, and Cleve was a good person for me to bounce things off. He at that time was administrative assistant to Art Agnos, who at that time was an assemblyman [for San Francisco]. [He] was actually the first in the country to get legislation passed through the state legislature that was helpful to the fight against AIDS.

Cleve and I would talk, and Cleve, among others, was always saying: "I think the bathhouses are a problem. We really ought to do something with that." One day Cleve called me up and he says, "I can't defend [you] if you close the bathhouses." I said: "How can you say that? You've always said that you wanted them closed." He said: "I did and I do, but if you, the director of health in the most liberal-appearing city in the country, do this, think of the impact that's going to have on less tolerant communities. We'll see an implementation of the sodomy laws, passage of laws; we'll see things against gays that we have never witnessed before, or have witnessed before but don't want to witness again." That argument, which was rampant through the gay community, was something that took most proponents and made them opponents.

Even before Cleve did that, I was trying to work with the gay community to close the bathhouses, or at least to, quote, "clean them up" so that they wouldn't facilitate the spread of HIV and AIDS. In the early years before I got to San Francisco, there were several gay bars that had only one exit, which of course is a fire hazard. If the fire is between you and that exit, you can't go out. People were starting to demand that they put a second exit in. They weren't listening. They then sat in front of the bar with a fire door and a desk right out there, and within days there was a second exit. In these days, I figured if they could do that, maybe I could get them to help me close the bathhouses, or get the bathhouse owners to change the way in which bathhouses operate. I tried for years, and I failed, and I acknowledge that I failed, but that would have been the perfect way to have dealt with this in the early years.

To a gay man, what was the significance of the sexual revolution that happened in the '70s and '80s? Why was this so significant? Bathhouses weren't just a convenient place to get laid, were they? I mean, they really represented something.

Bathhouses represented a way in which you could maintain two personalities, if you will, two images. You could be Mr. Straight on the outside, come in, have anonymous sexual contact, sometimes not even see who your partner is, go back out, and you're Mr. Straight again. The fear of discrimination and stigma would be diminished significantly under those circumstances. ...

What were these establishments?

Well, bathhouses weren't quite what people thought about. In fact, there are heterosexual bathhouses in the city which have individual rooms with a shower and a bed and sauna, and you can go in there just as you might go into a hotel room and have your privacy.

In a [gay] bathhouse there were orgy rooms. These were rooms where there was music; the lights were down low, even maybe so low that you didn't even know who you were with -- with bodies, and I say bodies because there were no personalities at that point in time. There were what they called glory holes, where there was a hole in the wall between two rooms, and a person could put their penis through there or receive it from the other side and not know who the purveyor of that was. It truly could be an anonymous situation. There were also social situations with lights and social areas and what have you. ...

Why were they such a health hazard?

... What was unique here was that people could come there and have multiple partners, as many as 20 or 30 a night. Most men, heterosexual men, could not understand how this was possible, but if you are the recipient, then obviously you could have as many partners as you can tolerate. And if you had 30 partners, and one or more of those partners was HIV positive, there was a good chance, not necessarily every night or whatever, but you were placing yourself at great risk -- unknowingly, of course, in the early years -- at risk for getting infected. ...

The mayor at that time said, "If you save one life, then it's worth closing the bathhouses." At the time that this was going on, it was my feeling that we wouldn't save one life; we would lose many more, because the bathhouses represented 5 or 10 percent of the gay community on any regular basis. That's who frequented those bathhouses. That left you with 90 or 95 percent of the community you needed to reach, because if you could make the bathhouses disappear overnight, you weren't going to make the transmission of this virus disappear overnight. One had to think of the entire community, and how do you reach that community and get a behavior change?

Interestingly enough, before any of the drugs were discovered and out in general distribution, the rectal gonorrhea rate in this city dropped from 100 percent that we had figured that we had before down to 15 percent. There was an 85 percent drop. The reason I bring that up is in the early years, that was what we were using as a surrogate marker. We didn't have HIV identified or the test, so we figured if someone had that, there was a good chance they may have whatever this new disease was. This dropped 85 percent before any drugs, and the reason it dropped was the exposure that the Health Department and working with the gay community had in getting the message out and getting behavior change, a behavior change never seen before.

If you have an obesity clinic, a smoking cessation clinic, a drug substance abuse clinic, where you're trying to get people to stop, and you get a 20 percent success rate, ... you feel you've had a success. We're talking here about an 85 percent drop in rectal gonorrhea. That meant that from a public health perspective, we must have been doing something right.

Why did so many of the members of the gay community vociferously oppose the idea of bathhouses being closed? ...

Opposition came from many places. I remember one gay man saying to me -- in fact, he was a neighbor -- he was saying: "Please don't close the bathhouses. That's the only place I feel safe. I used to be a gay basher before I acknowledged my homosexuality. I don't want to be the recipient of that, and I'm safe in these facilities." ...

Again, I think the overriding issue was, if the government in San Francisco closes the bathhouses, what is this going to say to the rest of the nation with regard to gay liberation and gay rights and all the issues attendant to that?

When Rock Hudson announced that he had AIDS, why was that such a significant moment?

The issue of AIDS was bubbling, and by that I mean it was in the press; it was written about. ... Then all of a sudden it's announced that Rock Hudson has AIDS. This had such an effect. I remember my mother-in-law calling me up and saying, "I didn't realize AIDS was such a problem." I mean, I'd been talking to her about this for years, but Rock Hudson had it, and even though it was divulged at that time or later that he was homosexual, he was in a bedroom scene with Doris Day; he was the all-American male and had all the all-American females. Here was somebody that people related to.

That is what is so important in reducing discrimination, is the more people that people relate to that they realize have HIV, that reduces the stigma and discrimination, and this was a significant point at that [time], through the history of this, to start people really thinking, well, if Rock Hudson could get this, this must really be serious; this must really be a problem. Of course if you remember that picture, that vivid picture of Rock Hudson standing next to Doris Day looking about as much like Rock Hudson as I don't know what. I mean, he was not the man from Giant; he was a man who had aged, and a very enfeebled, at least physically enfeebled person.

The only impact in this country that was bigger was Magic Johnson, because here was Mr. Infallible. He could do anything, and even he could get infected. I think the public response to that will far outstrip the response to Rock Hudson. ...

What did Ronald Reagan say about Rock Hudson?

Well, he didn't talk about him getting AIDS. Ronald Reagan was a real problem. We've had [his] funeral, and it's not nice to talk about the dead, but I watched what was going on that week, and it reminded me of the story of the farmer who has died, and the mother with all her children is sitting, and the casket is open, and the preacher is just waxing eloquently about this man. She points to one of her kids and says, "Would you go up and see if that's your daddy in that box?"

I was sitting there listening to this, and certainly Ronald Reagan did a number of wonderful things, but he wasn't compassionate and he wasn't caring when it came to the gay community, when it came to HIV and AIDS. In fact, the first time he ever really publicly uttered the word "AIDS" and spoke about it was at the American Foundation for AIDS Research [amfAR] dinner in Washington, when he gave a speech. It was about 1986, 1987 when he started speaking about this. ...

[Talk about that speech.]

The speech was interesting. I sat with his speechwriters and gave them what I thought was going to be the speech -- not gave them in handwriting, but we discussed it. I remember standing there after I introduced him to the audience, and standing next to him, and my wife was sitting down in the front row, and he started talking, and I'd sort of look over to her and say, basically with our sign, "That was mine; that was mine," and I was really feeling good -- not that my words were being used, but that he was talking about compassion. He was talking about, you know, the enemy is the virus, not the individuals, all these wonderful words.

Then the whole thing changed. The rest of the speech, as I understand it, was written by [domestic policy adviser] Gary Bauer, and the rest of the speech talked about mandatory testing and all of these kinds of things. … There were some demonstrations, and there ended up being a demonstration inside and with people standing up and turning their backs to him when he got to the second half of the speech, because what he was saying was counter productive and not going to be helpful in dealing with this epidemic.

…And the media, much to my dismay, didn't print or have on film a word that talked compassion and caring. All they had was the controversial words and the reaction of the audience to those controversial words.

When I said to some people in the media that I was friends with, "Why in the world didn't you?," they said, "Well, that's what you expect a president to say." I said, "But this president had never said it before, and it was monumental that he said it, and those words would carry across America and maybe change some people's ideas," when in fact it was, again, what was the controversy, and it was totally focused on that, and not one word about the supportive, compassionate, caring aspects that the government and that the people should give ever got into one story.

What was Liz Taylor's involvement in that?

Elizabeth Taylor was a significant individual in the early years of the epidemic, probably for no greater reason than as a member of the entertainment community, she was out front and talking about this disease which most people did not want to talk about. This was before she even knew about Rock Hudson. This was something she felt very much was being disregarded by the government. The public was not paying much attention to it.

She, working with the American Foundation for AIDS Research, started speaking out at press conferences, at hearings in Congress, at international conferences about the need -- all the words that I would have liked President Reagan to say, talking about caring and compassion and all of these things. It was significant, and she, for American Foundation for AIDS Research, raised a significant amount of money, which was very important in the early days, because contributors were few and far between for us to be able to do the funding of research in those early years. ...

How was amfAR set up?

There was the AIDS Medical Foundation in New York that was run by Dr. Mathilde Krim that was already ongoing. There was a feeling after Rock's problem that there should be a foundation, and it was on the West Coast where there was talk about this. It was then felt that, why not bring these two groups together instead of having two competing foundations? Let's set up one foundation, the American Foundation for AIDS Research.

Rock Hudson loaned, I believe, a quarter of a million dollars to jump-start the foundation, and that was very important, because when you're starting this, unless you have a sugar daddy somewhere, it's very hard to get these things started without up-front money. That was a significant contribution at that time. ...

Also, by contrast, when the government had been effectively starving the AIDS campaign of funds.

The government was very slow in coming forward with monies. Nowadays the NIH [National Institutes of Health] has billions, but in those days they didn't have a lot of money. It was very difficult. It took a long time to get research started through getting funding from the federal government, so one of the things that the American Foundation for AIDS Research could do was turn around a request for funds for research in literally months, a few months, as opposed to 12 to 18 months.

We would also fund things that were exciting and unusual that the federal government might not fund. With that very little bit of funding at that time, we would give the researcher enough to then have more research to take to the government, and in fact, generally it was like eight to one. Every dollar that we gave to a researcher was multiplied eight times when he went to the federal government to get the necessary funding to continue his research. ...

Who was Ryan White, and why is he important in the history of AIDS?

Ryan White was a young man who was infected with HIV not from all these guilty kinds of things -- not from sex, not from shooting up drugs -- and was a very charismatic young man who, along with his mother, were coming to say: "We need money. We need more money for many programs, for many of the clinical programs, for pediatric programs." It was a very smart move, and actually it was done with somebody from amfAR who said, "Let's call it the Ryan White [CARE (Comprehensive AIDS Resources Emergency)] Act." The name you place on American legislation can be very, very helpful, because it's that 15-second sound bite that gets heard, and that's a significant amount of funding that is still available today for services, prevention and care services in the community.

Why is that important in the bigger story?

Well, it's important in the bigger story because we cannot just depend, even though there has been a great infusion of funds from the government, depend on the federal government to do all the funding for what we need for several reasons: One, there's not enough funding; two, the federal government puts restrictions. Education, especially due to Sen. Jesse Helms (R-N.C.) -- we could not fund anyone who would talk about homosexual sexual activities in their prevention activities. That's like saying we want to try and stop alcoholic-related deaths on the highway, but we can't talk about booze and we can't talk about cars. You can't do that. So within the federal government funds, there are many strings.

Today we're facing this abstinence-only funding. In fact, one-third of the monies, the new monies, President's Emergency [Fund] for AIDS [Relief] -- 30 percent of the prevention money has to be for abstinence only. Well, abstinence only is fine if it works, and for some people it does. But if you don't say abstinence, be faithful, use condoms when necessary, have women around the world educated against this, have access to female-controlled prevention methods, you haven't reached the people you need to reach. If the government's saying you can only use this for abstinence only, then you can't do your job. ...

I said in 1983 -- and there's nothing that has changed my mind, in fact it's only reinforced it -- that AIDS was the most political disease I had ever seen or read about. That was so discouraging to me because here we had a medical mystery that even without any political interference would be a tremendous thing to try and solve and deal with. What makes this so difficult is we have a medical conundrum, if you will. We don't have a cure, and we don't have a vaccine. None of the drugs, though they're helpful and they're effective, will guarantee that people will live a long life. We have none of these things, and so the medical mystery, the medical difficulties were there.

When you overlay that with political things, roadblocks in education, getting the proper education -- when you educate people, you want to make sure they hear what you say, internalize it, and then act upon it. That means you have to speak to them in a language that they understand, that may be using language that the average citizen might not want to hear and shouldn't need to hear, but the audience you're trying to reach should.

Yet we have the federal government saying, "You can't say this; you can't do that; you can't use money unless you talk about abstinence only." Abstinence only in a family situation where the wife is not infected and the husband is is not going to be very effective. I could go on and on about why abstinence-only programs don't work. That's the first part of any prevention program, but it's the first part, not the beginning and the end.

So the politics has made this -- and it makes it worldwide; it's not just in the United States. You have countries like Uganda, where the president came out foursquare about AIDS and talked about it and said, "We can't have discrimination," and talked about it in the ways that the population could understand. The rate of new infections went down. This is without all the Western medicines and the media and all of the things that we have in this country. We know that when you have political support from the highest levels, it can have an incredible effect; that it's politics in the positive sense in dealing with an epidemic like AIDS.

Do you think it's politics that are to blame for the missed opportunities that resulted in this disease not being checked early on but spreading and spreading?

Without question, politics has been one of the driving forces in the spread of this disease. In the early years of the epidemic, we said quite innocently that we believe that the epidemic started in Africa. We weren't pointing the finger; we were just making a good, reasoned guess based on scientific information.

The African countries saw that as the West again is pointing their finger at Africa, and they went into a state of denial. They were worried about economic programs; they were worried about tourism, what have you. So they told their health ministers, "Don't look for it." If you don't look for it, you don't find it; you don't report it; then ostensibly you don't have it. While this was going on, this denial, the disease was spreading and spreading and spreading.

A more modern-day [example] is in China, where the government-run blood banks where people would donate their blood, the government would take the plasma, pool all the red cells, and put them back into all of the donors. Of course, if you mix your red cells with somebody who's infected, you're going to get infected. That was covered over and covered up for a long period of time, and now I believe there's over 1 million people infected in China just as a result of that.

So I could go down a litany, a laundry list of where politicians and governments have complicated our dealing with the disease and have made it a worldwide pandemic. ...

If you were the president of the United States, or if you were in charge of the health policy back in 1981, '82, '83, what should this country have done to contain the outbreak right at the beginning? What would the correct policies have been? What were the missed opportunities?

First of all, the president should have done the same [thing] that President Franklin D. Roosevelt did during the war, and that is have fireside chats, trying to dispel the fears, trying to make people more relaxed about what was a very serious situation. We're at war, if you will. The analogy of war and AIDS is a very good one. We lose people in the prime of their life. There's a number of enemies -- in this case a virus, an ignorance, an intolerance and discrimination, all of those things.

What you need is the person at the top, whether it's the United States or any other country, coming out and saying: "We can't have discrimination. We have this problem. We want to work together. Please come forward; get tested. We're going to try and provide treatment for you" -- all of these kinds of things. That's the first thing that needed to be done back then, and it still needs to be done today.

Second, there needed to be an infusion of money. Now, money doesn't cure all evils, but you do need a significant amount of money to do research, and that money took a long time to come. Now we have a significant amount of money in this country and in other countries for research, but back in those days there wasn't that kind. Getting the money out for the research, getting money out for education programs -- because if you don't have any magic bullet and you don't have any vaccine, you don't have any drugs, education is the only thing that you have. It's the only tool you have to try and stem the tide.

I think administrations throughout the AIDS epidemic, [for] many of them, ignorance seemed to be bliss. People feared knowledge. My feeling is, give people the knowledge; it's ignorance which is dangerous. They got all caught up in moralistic attitudes of what age you're talking [to], what schoolchildren should get it. I think there is nothing more immoral than allowing our youth to die out of ignorance, and that's what happened, and it continues to happen around the world. ...

What did you think of [Bill Clinton's] policies as he came into office?

He was very up front and very supportive of a number of AIDS programs, and it put more money into AIDS programs. I was very disappointed -- and I think he has now realized that it was a mistake -- that he continued to oppose federal funding of needle exchange programs.

Needle exchange programs are sort of counterintuitive. You figure if you give needles and syringes out, you're just going to increase the drug problem. In reality, you don't increase the drug problem; you decrease the HIV problem, and in fact, may decrease the drug problem, because people feel so comfortable in these settings that they say: "Get me in the treatment. Please help me get into treatment." You may actually reduce that.

The word was as soon as research showed that all those things happened -- that you didn't increase drug use; you decreased HIV spread -- then there would be federal monies. He actually had -- there was a press conference where Secretary of Health [and Human Resources] Donna Shalala said that research has shown that it doesn't cause drug use, and it does reduce HIV spread, and they still didn't put the funding in. That was a disappointment to me. ...

Do you think he just chickened out of the needle issue?

Oh, he did. He definitely chickened out of the needle exchange issue. The problem that I had is that a lot of things -- and I thought Bill Clinton was brilliant and was in many ways one of our best presidents -- but it was always checking the weathervane. Which way is the wind blowing? Drugs were a very sensitive issue with him, and he had a drug czar, [Gen. Barry] McCaffrey, who I think very likely -- and I've heard rumors -- threatened that if [Clinton] went and put federal funding into needle exchange, he would resign. I don't think Clinton wanted to see that.

That was a disappointment, and I think he has acknowledged that in retrospect that should have been funded. It still should be funded. They won't even allow needle exchange, even privately funded, as I understand it, in the District of Columbia. Here we are, how many years out in this epidemic, with a prevention program that we know works -- not 100 percent, but works to reduce the spread of HIV among the substance users. And even people who don't care about substance users, you might want to care about their children and their spouses. ...

Why was the issue of testing so controversial in the early days?

Testing was very controversial in the early days for a number of reasons. Actually, in the very early period, the gay community wanted to get tested, and there was nowhere where they could go, so they thought, well, what they might want to do is go to donate blood, and since they were testing it at that time, they could get the results. I tried to work with [Reagan's Secretary of Health and Human Services Margaret] Heckler's office to get some funding for anonymous testing sites, and they refused.

At that time I was president of the U.S. Conference of Local Health Offices, and I wrote her a letter saying we must have funding for anonymous testing sites so people will feel comfortable about going and won't go to the blood-banking facilities, which if they do will cause contaminated blood. … Her assistant called up very, very upset: "How can you possibly say that?" I said, "Because it's true, and if you don't fund it tomorrow, I'm having a national press conference." Well, the next day, millions of dollars were available, and we set up anonymous testing sites, and they were important because you could go in, be tested. You were given a number. You call up, give your number out, and they would give you the results, or you could come back. ...

A number of people actually didn't want to be tested. They figured, why go be tested? You can't give me anything; there's no treatment. There was a reluctance then -- and that, by the way, is worldwide. It is very difficult now to get people to come in and be tested because, especially in many of the developing countries, [when] word gets out -- and it will get out -- your life is made miserable and intolerable.

Back even in those days, where people figured, what's the benefit? -- but we felt it was very beneficial. Then many of the AIDS organizations started encouraging people to get tested, because they felt it was important for you to know your status so a, you wouldn't spread it; b, you'd take better care of yourself. ...

You've talked about denial around AIDS being like the last stage of grief. What do you mean by that?

Well, you have denial in a number of ways. You have governmental denial -- in other words, if we don't address it, we don't have to worry about it - -and also a denial that it's not going to happen to us: That happened in Africa; we're not Africans. Or that happened in South America, and we're in Asia, whatever it is.

There was a denial in this country, as we've talked about, in the Reagan administration, a real denial. Denial on a governmental level means that there is not going to be the educational impact of political speaking out on the issue. There's not going to be the money that's there; there's not going to be a lot of the things that are necessary.

You have denial in South Africa, with [President Thabo] Mbeki years back [saying] he was not sure that HIV caused AIDS, and [he] wouldn't even allow the free distribution of a drug that would reduce vertical transmission from mother to newborn infant. That denial can have a very, very direct impact.

There's also denial on a personal level. We've had sexually transmitted diseases since the written history, I'm sure. We now have treatments and cures and education, and you know what? We still have sexually transmitted diseases. Syphilis rates are going up; all the different sexually transmitted diseases are coming back even greater. They were suppressed a little with the response early on AIDS. So you have personal denial.

That's why I think we will have to have a vaccine if we're going to solve this problem, because if we leave it to human nature, it's not going to work. Witness what's happened with sexually transmitted diseases in general. People don't usually, in the middle of sexual act or getting ready to have a sexual act, whether they're stoned on passion, on drugs or on alcohol, stop and say: "Now what did I hear them say? What was that message, I should use a con-- Forget it." Hopefully people will do it, but we know they won't, and so ultimately we have to have what I call the magic bullet, which is a vaccine which you give to a child like you give all the other childhood vaccines. They want to get into kindergarten, they have to have these. Hopefully it would be one that would be long lasting.

Having said that, we have to realize that we've had a polio vaccine for over 50 years, and we still have polio in the world.

Why do you think there's an air of complacency about AIDS now? Why is it not mentioned in the papers?

The complacency, again, is on different levels. You have complacency on the level of the individual. In San Francisco, in the early years, you had this new disease which created fear. Your friends were dropping like flies from this disease. You were going to memorial services on a regular basis, [so there's] that ... message, educational message, prevention message which is being reinforced by people dying around you. There were social support systems to help you go through all this. Then as you walked down the street, you saw somebody else walking down the street, as I mentioned, who looked like they were on death's door. You had a lot of reinforcement, and you had a lot of support in the community for behavior change.

Now, fast-forward to today, where in the United States the death rate has dropped precipitously -- the AIDS rate has dropped precipitously. People who were writing their memorial services are now working out in gyms and going back to work and look as fully normal medically, if you will, than anybody else who is not HIV infected. Especially young people who today never knew a world without AIDS, so this is not something new, young people are saying, "Oh, what's the big deal? If I get it I'll take some pills," not realizing that the pills are not innocuous. There's lots of side effects, and they may not work if you happen to be infected with a virus that is already resistant to these drugs.

The complacency comes about as a result of our success. It's the double-edged sword of our success, where people don't see it as a crisis, don't see it necessarily personally affecting them. ...

You add that to a general complacency around the country, because we can't keep crises front and center all the time -- there is ethnic cleansing; there is starvation; there are wars; there are what have you. Each new thing sort of pushes back the crisis du jour of yesterday, and AIDS is of course yesterday. So there's a complacency among the public, and that results in maybe less political will, less philanthropic support. ...

The success is it's not the tragedy that it was in the past in the developed world. In the developing world, it's a crisis of proportions that far exceed anything that was seen in Western Europe and the United States. It's not that anyone suffering is less than anyone else, but from a societal thing, what's happened in Western Europe and the United States is a drop in the bucket, in a very big bucket of human suffering. ...


home | introduction | watch online | the virus | maps: the global picture | timeline: 25 years of aids | interviews
past & future | quiz | join the discussion | artifacts | best of the web | today in hiv/aids 
site map | dvd/vhs | press reaction | credits | privacy policy | FRONTLINE series home | wgbh | pbs

posted may 30, 2006

background photo copyright © 2006 corbis
web site copyright © 1995-2013 WGBH educational foundation