In 1981, Dr. Jim Curran was a researcher at the Centers for Disease Control and Prevention's (CDC) Sexually Transmitted Diseases division. Soon after the first reports of illness came in, he became chair of the CDC's working group on the disease that would come to be known as AIDS. Here he recounts the "shoe-leather epidemiology" that allowed public health officials to identify the new syndrome and ultimately the virus. Having spent 25 years fighting AIDS, Curran is saddened and angered at the "predictable" societal response when AIDS is identified in a population -- denial, discrimination and "compartmentalization and ghettoization." "The different thing about AIDS, compared to many other public health problems, is the centrality of the importance of the people and their ability to protect themselves, and the way society prevents them from doing that," he says. "When you realize that a society you live in or a community you live in is actually either actively or subconsciously hampering public health efforts, it becomes hard not to be enraged by that." Curran is now a professor of epidemiology and dean of Emory University's Rollins School of Public Health. This is an edited transcript drawn from two interviews on Jan. 18, 2005 and Feb. 15, 2006.
- Some highlights from this interview
- The consequences of Reagan's "neglect" of AIDS
- The proper relationship between public health and politics
- The condoms-abstinence link
- Proof prevention efforts work
Tell us how you personally first became aware of this new disease out there.
I was chief of the research branch of the division of Sexually Transmitted Diseases at the Centers for Disease Control [CDC] in Atlanta in 1981 when some unusual cases of fatal pneumonia were reported among gay men in California and New York. We had worked closely with the gay community in evaluating the hepatitis B vaccine, so I became very aware of the potential importance of a new disease that was focusing in gay men. ...
Let me ask you about that. There'd all ready been several epidemics running through the gay community, hadn't there? There'd been hepatitis B, a lot of gonorrhea and syphilis. According to Randy Shilts's book, some doctors are actually worried that an epidemic might be about to break out, that this community was very, very vulnerable. Is this true?
The 1970s in the United States and other industrialised countries saw epidemics of sexually transmitted diseases in both the gay and straight communities. In the gay communities in the United States, in addition to gonorrhea and syphilis, there were epidemics of hepatitis, due to hepatitis B and other viruses and even infections like amoebiasis. So it wasn't surprising that if a new infection were to come along, that it could be focused in the gay community.
One thing as a layman I've never quite understood is you have a teeny handful of cases, four or five or six, and yet for people in Atlanta, immediately alarm bells start to ring. How is that?
The CDC is best known for its epidemiology, for trying to determine the distribution and determinance of a disease. When a disease comes along and may be new, it's important to find out who gets it, how often do they get it er and is it really new? Where might it be? ...
What happened when the first cases of Pneumocystis pneumonia were reported in gay men was a vast survey in the United States and elsewhere of other cases of Pneumocystis pneumonia occurring. This was a very rare, fatal type of pneumonia, and it had previously only occurred in people with severely depressed immune systems. Pneumocystis is a scavenger-type infection, only preys upon those who are the least able to deal with it.
We found, looking back in the previous 15 years, that there had only been one case in the United States that we could find that had occurred in people without cancer, without transplants, who were taking drugs to suppress their immune systems or with other congenital immune deficiencies.
So when you came across that first handful, you thought it was significant.
We thought this was new. Here were four cases of fatal infections occurring in people who were previously very healthy young men, and all gay and all from Los Angeles at the same period of time. ...
Our first task was to establish a definition of what would be called AIDS, and the definition included Pneumocystis pneumonia; a very rare cancer associated with immune suppression called Kaposi's sarcoma; and a couple of other fatal infections. We went back to 18 major cities in the United States and surveyed for five years [previous] all possible conditions that would fit our case definition, as well as going through our own records.
In the early days, what was this unknown disease called? What name was it given?
... Some investigators who were seeing cases in gay men chose to call the syndrome gay-related immune deficiency, or GRID. While this had some acronym appeal, we rejected that at CDC because we had not known of any epidemics related only to a single community, and it made no sense that it would remain that way. ...
What happened [on] June 5, 1981?
On June 5, 1981, the CDC published the first MMWR article on Pneumocystis pneumonia and gay men. The MMWR, the Morbidity and Mortality Weekly Report, was CDC's weekly publication talking about new disease syndromes. Five cases of Pneumocystis had been diagnosed by physicians in the Los Angeles area over the previous year and were summarized in that article, and this represented the first official publication of what is now termed AIDS. ...
People talk about shoe-leather epidemiology. What exactly does that mean, and what do people actually do?
The term "shoe-leather epidemiology" is an enduring one to many of us who believe that, much like with journalists, that we can walk the beat. We can go out there and find the truth by interviewing people and by getting to the source of the problem. That's now, of course, complemented greatly by computers and sophisticated analyses, but it points out the importance of seeing patients who are ill initially, understanding their life circumstance, viewing what goes on in the household, and looking for clues before more extensive studies are designed.
What kinds of questions would they ask?
We were struck initially, when we saw all the cases in gay men, that the men were, first of all, average age of 35 or so, somewhat older than the average person with a sexually transmitted infection. We were impressed that the cases seemed to occur in very large cities, which were the centers of gay lifestyle. We knew that gay men lived throughout the United States and throughout the world, and yet the cases initially were from Los Angeles, San Francisco, New York, even in Atlanta rather than around the entire country. We were struck that all of the men were open and out of the closet, that they were active gay men who had been mostly open in the gay community for 10 years or more. We were also struck that they had a complicated social lifestyle, involving a number of recreational drugs as well as a large number of sexual partners.
And what conclusion did that lead to?
Our bias from working in sexually transmitted diseases was that a new problem in the gay community would be most likely due to a new or modified infectious agent that could be transmitted through sexual contact.
Shortly after the cases were documented in gay men, there were a small number of cases that were seen in injecting drug users who had been reported to be heterosexual, although most had not lived long enough to be interviewed. This furthered the pattern of an infection that could be something like hepatitis B, transmitted both through blood as well as through sexual behavior.
How soon did CDC actually set up a special unit or department to handle this growing crisis?
CDC has always been best known for its responsiveness. Before the first cases were reported June 5, 1981, in the MMWR, we set a small working group together, and I was asked to chair the group right about the time of June 5, 1981. ...
You've talked about how it first seems to appear in the gay community, and then quite soon IV drug users are detected. What's the next step that broadens the spread of this disease and broadens your understanding, or even deepens the mystery?
As cases were reported in gay men and then injecting drug users in 1981, early 1982, we were concerned that heterosexual contact, transmission to newborns and perhaps even transmission through the blood supply could come next. We were highly sensitized to new cases which looked like they might fit that pattern because of the hypothesis that it was caused by a virus.
The first cases that looked like they were heterosexually transmitted were diagnosed in New York actually, not in Africa, as many people now believe. They were cases who were spouses of injecting drug users -- again predictable. Most of the injecting drug users were heterosexual men, and their wives and girlfriends could be logically seen as acquiring this through sexual contact.
There was an enormous amount of denial, however, and skepticism about this, because America, and perhaps all of us, did not want this to be heterosexually transmitted. We didn't want to hear that it could affect all of us. We wanted to be able to compartmentalize it and say, "Thank God we're not gay men," or "Thank God we're not drug users." But the implication of heterosexual transmission, of transmission to newborns, was a much broader one that said this epidemic had implications well beyond the initial groups.
Tell me about how the first hemophiliac cases were reported.
Perhaps the most important breakthrough in the epidemiology studies of AIDS were the cases reported in persons with hemophilia. Hemophilia is a sex-linked disorder, occurring almost exclusively in men, which results from a deficiency of Factor VIII or Factor IX in the blood-clotting mechanism. Beginning in the 1960s, hemophiliacs could take Factor VIII and Factor IX concentrates prophylactically to prevent themselves from having their bleeding disorders, from having strokes, from having severe disabilities, and persons with hemophilia were beginning to live a rather normal life. ...
The concentrates were pooled from 10,000 to 20,000 donors each. During his lifetime, a person with hemophilia would be exposed to hundreds of thousands of donors. No method of virus inactivation was used in these concentrates because the factors themselves were very unstable, and it was thought that heat inactivation or something else would damage the clotting factors. What a perfect setup for a new virus in the blood supply. Someone who would receive blood from 250,000 people, virtually all at once, would likely be the first one to get the new virus, particularly a new virus for which there was no immunity in the blood itself.
The first case of Pneumocystis in a person with hemophilia was reported in early 1982, ... an elderly man who had died. How are we to know whether perhaps he had homosexual contacts or had been a drug user? But we thought if there was one and if it was real, there would be more. Within a couple of months, there were two more cases of Pneumocystis pneumonia in young men in parts of the country that had virtually no exposure to AIDS, the first cases in their own communities.
We sent investigators for several weeks to each community while these men were alive and lived with the families, went over every possible lot of concentrate, every possible exposure they may have had. We were convinced that these three cases represented a new pattern to the epidemic that conclusively documented that this was caused by a virus as yet to be identified and a virus that could be in the blood supply and undoubtedly was. ...
What was the bigger impact of those first three cases among hemophiliacs?
In July 1982, the first three cases of what is now termed AIDS were reported in persons with hemophilia. The impact of that report was tremendous. Almost immediately people became convinced that this syndrome was caused by a virus that could be transmitted through the blood supply. Great concerns about the blood supply, great concerns about sexual transmission, great concerns about transmission through casual contact followed.
Shortly thereafter, the CDC adopted the term "AIDS," or acquired immune deficiency syndrome, to refer to the epidemic, and we also were able to publish in March of 1983 consensus recommendations for prevention of AIDS, well before the virus itself was discovered.
What sort of things were you advising?
The recommendations included prohibition of donation of blood from people at risk of AIDS; reducing the number of sexual partners, including avoiding unprotected sexual contact with people with AIDS or people at increased risk for AIDS; not sharing needles for drug users; and reduction of drug use. ...
How did Haitians come to be seen as a risk group?
In 1982 there were some rare, fatal infections occurring in the central nervous system of young Haitian migrants to Miami, Fla. These cases were documented by a pathologist in Miami and clinicians in Miami who said: "We've not seen this before. We've only seen it among these recent migrants." These are serious scavenger-type opportunistic infections, not unlike the Pneumocystis seen in gay men.
Understanding what was going on among these young men and occasional women in Miami necessitated understanding Haitian migration patterns as well as what was happening in Haiti itself. At that time, 1982, perhaps a half million people of Haitian descent lived in the United States, most in the Northeastern United States -- New York and around that area -- and yet there were no cases of AIDS in those populations. The cases were only occurring among the recent Haitian migrants, coming at a time of revolution in Haiti, at a time when the boat people were coming over in hundreds of thousands and landing in Florida.
Only recent migrants from Haiti had the condition, and they had it in the gender distribution of the boat people, so perhaps three-quarters to four-fifths of them were men, and three-quarters to four-fifths of the boat people were men, suggesting a rather equal distribution by genders, compatible with heterosexual transmission of a disease for which there had yet been no cause.
[There were a] lot of concerns about identifying the problem among persons from Haiti. Haiti was and still is the most economically deprived country in the Western Hemisphere. It's a country in which there was a tremendous ambivalence toward the boat people, who were themselves escaping persecution and poverty and yet were landing on the shores yet to be labeled with a new epidemic. Yet 60 percent of the cases in Florida were among these Haitian migrants, so we reported the cases as we saw them, and until the virus was discovered, they were identified as a group at increased risk. ...
When we were in Haiti, [GHESKIO (Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections) Director] Jean Pape said that he felt the CDC had made a mistake in making Haitians a risk group, and that it had a terrible effect on the country's economy and socially for a lot of Haitians living here. Do you feel, with hindsight, that was a mistake or not?
... It was important ... to report the truth as we saw it, and without saying all Haitians are at risk of having AIDS, it was important to point out that the cases were occurring only among recent Haitian migrants in Florida, that they were not gay men, that they were not injecting drug users, and they fit a probable heterosexual pattern before the virus was discovered. There were some bad consequences from this, as there were in communities of gay men, but at the time we had to report it that way.
As the epidemic spread and the disease got a grip on the population, there were all kinds of fear, almost an atmosphere of panic among the public. Can you remember the kind of things people were frightened of? ...
During the first year of the cases of what is now called AIDS, there was virtually no media attention to the problem, very little public attention or concern. The epidemic was considered to be affecting only a few gay men, and then only them in a few cities in the United States. Even the gay community did not see it as relevant. By the time the cases were reported in infants and then ultimately in persons with hemophilia, that complacency had turned into nearly widespread panic.
What we had then was concern that AIDS could be easily transmitted from person to person, that merely eating a meal with somebody not only who had the condition but was [in] a group at risk of having the condition would be dangerous. Is it OK to take my children over to my gay brother's house for dinner? What if I see a person who's Haitian on the subway? Is it safe to be with a person with hemophilia?
This widespread panic led to often inadequate medical care, widespread stories about people who were afraid to bring meals to the patients with AIDS in the hospital, people who refused to care for people, people who refused surgery that was needed for many people with AIDS.
And schoolchildren -- some parents didn't want kids in their schools.
The most famous person with hemophilia was Ryan White, a boy who had been kicked out of school in one state only to move to another state where he was reinstated as a schoolchild. ...
Perhaps the most egregious discrimination occurred among a family in Florida whose home was burned down because their children were hemophiliacs with AIDS.
[What do you think of the Reagan administration?]
When Ronald Reagan was elected president, there was a time of high inflation and fairly high unemployment. His proposals were to reduce the domestic side of government while increasing defense spending, perhaps to accelerate the end of the Cold War. The reduction in domestic spending came at a time when there was also a conservative, fundamentalist agenda that made it more difficult for dealing with problems related to the gay community.
There was an open neglect, if you will, of the community and the failure of the president for many years to even mention the term "AIDS" that went along with the cutbacks in domestic spending and the concerns about the domestic budget early. I don't believe that the cutbacks themselves were strictly related to public health or to AIDS, but I do fault the president and his senior leadership for neglect and hostility [in] dealing with the gay community. ...
What was the actual long-term consequence of that neglect?
... One of the most difficult things for us at the CDC was feeling like the communities that were at greatest increased risk didn't trust us because we worked for an administration which wouldn't mention the word "AIDS." We worked for an administration which had some anti-homosexual agendas. That was difficult for us during that time period, when the vast majority of cases were occurring in gay men. ...
You talked about the threat to the blood supply. How did the Red Cross and the Hemophilia Association react to your fears?
When the first cases of AIDS in persons with hemophilia were reported, we convened the leading members of the blood-banking community and the leading members of the gay community, the leading members of public health, to talk about a rapid and appropriate response. There was no time for delay in attempting to do what we could to protect the blood supply.
Some blood-banking officials were skeptical, thought that many of our donor-exclusion techniques were perhaps unnecessary; that it was premature to make major changes. They were on the resistant side, but we didn't feel like we had time to delay, and consensus recommendations including the blood-banking community were written and promulgated by March of 1983.
But it took a while, and there was a lot of resistance.
It was not as fast as we would have had it, nor as slow as they would have had it. ...
Tell me about Rock Hudson's illness and the impact his disclosure had.
Rock Hudson had been ill with AIDS for a long time, during a time period when there were essentially no effective therapies for the disease. He went to Paris to receive therapy, which subsequently also failed. ...
I think this was the first huge American celebrity and worldwide celebrity diagnosed with the disease, a man who had been known by many -- my late mother all of a sudden realized what I was doing and said: "My goodness, Rock Hudson had AIDS. He was with Doris Day in this movie." They saw him as sort of the ideal male lead, and here he was dying of a disease, and a disease that was associated with homosexual contact.
It became a People magazine story rather than a New England Journal of Medicine story, and it was very important from the point of view of public awareness. ...
In [April] 1985, there was an AIDS conference, actually a rather disastrous AIDS conference in Atlanta. [What happened?]
The first International AIDS Conference was held in Atlanta in early 1985. At that conference, which by the way was free, nearly 2,000 to 3,000 people attended, including several hundred press. It was at that time that [former head of the World Health Organization's Global Program on AIDS] Dr. Jonathan Mann reported his first studies of AIDS in Zaire [now the Democratic Republic of Congo], very widespread reports of AIDS throughout the society of [Zaire's capital] Kinshasa. ...
One of the things that happened at that conference was that African delegates felt that they were being unfairly blamed. Is this a repeating pattern?
What we have with AIDS is that the virus is predictable, and the community response is predictable, too, to an extent. We know the virus begins by infecting people and remaining asymptomatic for many, many years, and it invades a community much like it invades a person, so that by the time the first cases of AIDS in the United States were diagnosed, 250,000 Americans were infected.
By the time the first cases were diagnosed in persons with hemophilia, half of the population of hemophiliacs in the U.S. were infected. By the time the first cases of AIDS were diagnosed in South Africa, millions of South Africans were infected. The pattern is clear: The virus precedes the disease by many, many years.
What's also clear is that the bugaboos resisting our control exist -- denial, discrimination and scarcity: The virus is going to be different in me. The virus will be different in our community. It won't cause AIDS like it does in the United States. It won't cause AIDS like it does in gay men. It won't affect us the same way. Until there are people dying in the streets, until it's palpable, people don't want to believe it.
Then there's discrimination against the people who acquire the infection through sexual contact -- because everyone else's sexual behavior but our own is forbidden, because we can't understand it; we can't condone it -- and against the infection itself, because we hate people who are sick and make us feel uncomfortable, watching them die, lose weight, have diarrhea and cry.
Then finally, scarcity. It seems to affect the poorest of us, the poorest nations, the poorest people. Those who are least able to deal with the problem are affected by AIDS. These three things -- denial, discrimination and scarcity -- are the enemies of AIDS prevention, and they're always going to be there. They're just there over and over and over.
So in a funny way, AIDS is as bad as it is almost because of our own moral failings as well as anything else?
Well, it certainly exposes our moral failings and our inability to deal with it. The sad thing is that it's predictable. It's predictable that [that] same lack of comfort, these moral failings just reappear in every population, only to be described anew.
... What were the complications that attended the invention of a reasonably reliable test?
... As scientists, we were very anxious to learn the cause of AIDS, to have a test which could detect people who have AIDS or who will get AIDS, who are infected with the virus or, importantly, who don't have AIDS. We as scientists and doctors say this is a breakthrough, because now we know how to deal with the problem.
But if you put yourself in the position of a patient or a person who may fear that they have the same condition that they've seen so many of their friends die [from], not only die but die ignominious deaths, and then you say: "Do I want to be tested? Am I afraid to be tested for a condition for which there's no cure, for a condition which I will be labeled not to myself but to the entire community as carrying a fatal virus, a virus that killed Rock Hudson? Do I want to be tested for that? And then who else will know my results? Will they go to the government? Will they go to the IRS? Will they go to my insurance company? Will they go to my loved ones? Who will decide who they go to?" -- a much different reaction than the doctors and scientists thought when we first discovered the cause, when we first came up with the test, when we first presented our breakthrough to communities.
So what's the moral of that story?
The moral of the story is that we're both right. We're all right. It's very important to know the cause of the condition. It's very important to know whether you have it or you don't, and it's become more important now in the time of therapy, because there is much that can be done. It's also important for people not to transmit the infection to others unwittingly.
But it's also important for us to realize as physicians about the sensitivities and concerns and fears of the population not only of an unknown, very scary disease, but of a government that they may not trust. ...
Reviewing the 1980s and the first 10 years of this terrible disease, what do you wish could be done differently, or what do you see as the opportunities that were missed? What would you focus on?
I think that partly as a condition of the long incubation period of the virus and the fact that the first cases of AIDS were not diagnosed until hundreds of thousands of people were infected, many of us are left with the feeling like we started too late, and we wish we had warned people even more loudly and sooner; that every day, whether it was a day or a month or a year, was regrettable; that we wish we could have made people more concerned faster. We wish we could have discovered the virus faster, and we wish we could have issued recommendations for prevention faster.
In retrospect, these things happened relatively quickly, and the progress made in the first five years, which included the discovery and the usefulness of AZT [zidovudine], looked pretty good relative to what the world societies have done in the subsequent 20 years.
The difficulties that we have now in dealing with many of the social aspects of the epidemic -- the huge inequities in the numbers; the vast majority of people who can't get treatment now are continuing in the same debate about the efficacy of condoms -- all of that really makes the concerns I have about the early years pale. ...
Who was Jonathan Mann?
Jonathan Mann had been a CDC epidemiologist assigned to the New Mexico Health Department. ... We wished to establish a permanent presence and a research station in Kinshasa, and Dr. Mann showed an interest [in] that, and we interviewed him, and he became the director of Project SIDA [the French acronym for AIDS] in 1984.
Within a very short two years, he established Project SIDA in Kinshasa to be the premiere international HIV research agency in the group, and made many, many insights and many publications. He came to the attention of the World Health Organization [WHO], at the time headed by Halfdan Mahler. The head of their [Division of] Communicable Disease[s] group, a man named Fakhry Assad, recruited Jonathan with the very small promise to head a small group on AIDS in Geneva, which he did for the subsequent four years until 1990. When he resigned, at the time, then Hiroshi Nakajima was the director-general of the WHO, and he and Jonathan Mann did not see eye to eye. ...
Jonathan ... understood that there was getting to be worldwide complacency by 1990; that the horizons were clear in the industrialized countries; that the donor philanthropy was driven in part by the fear of citizens of the developed world that the epidemic was owned by us, not just by Africa and by developing countries; and that there was donor lethargy. He knew that but didn't accept that, whereas perhaps others were more accepting of it and ready to move on to other priorities. ...
What sort of effect did his death have? Was it a sort of wakeup call or a reminder of what he'd stood for?
I think that Jonathan Mann perhaps remains the most memorable worldwide advocate for AIDS, and his death [in a Swissair plane crash], along with his wife, [Mary Lou Clements], who was an international AIDS vaccine researcher, on a trip to Geneva to work with WHO reinforced his importance during those early years of global AIDS and reminds us of the passion and the global concern. ...
In 1998, at the International AIDS Conference in Geneva, Switzerland, Jonathan Mann addressed the audience some eight years after he had left the WHO, and incidentally on the date of the 50th anniversary of the Universal Declaration of Human Rights, and he said then, "Our responsibility is historic, for when the history of AIDS and the global response is written, our most precious contribution may well be that at the time of plague we did not flee, we did not hide, and we did not separate ourselves." That was the type of leader that Jonathan Mann was, a man who would not give up and would not let others give up. ...
From a public health standpoint, does needle exchange make sense?
... Our society remains unwilling to take what could be logical steps, providing absolutely essential drug treatment to all infected drug users, providing clean needles and syringes to those for whom there is no treatment or for those who are addicted and simply won't stop. These things make much logical sense, but social concerns and the place of drug users in our society prohibit their being taken seriously by many.
Wrongly in your view?
My view is to try to prevent as many deaths from HIV as possible. I can't be concerned only about messages and only about what the majority of people in society feel about minorities, or, more importantly, whether they choose to neglect them.
Injecting drug users have long been ghettoized in communities and have been hidden away, perhaps conveniently, from our view. The AIDS epidemic brings them out into the open. They have sex with people who don't use drugs, and their babies don't use drugs; the babies of the people they have sex with don't use drugs. The convenient compartmentalization and ghettoization simply doesn't work, but the attitudes are hardened. We need to get rid of the sclerosis of the attitudes to get at the problem. ...
Do you feel that President Clinton was a political coward in the way he handled the needle exchange issue?
Yeah. But President Clinton approached the needle exchange issue after he had found it impossible to deal with the issue of gays in the military. He had found perhaps limits to dealing with certain types of public health or political problems. Needle and syringe exchange has opponents throughout the political spectrum, including people who live in those communities. Needle and syringe exchange programs are often put into very strong minority communities, and people don't want them in their backyard, so the political opposition to needle and syringe exchange was more widespread perhaps than the Clinton administration anticipated.
... You seem to be a person who feels passionate about being tolerant and inclusive. ... Is this something you learned on the job or something you brought to the job with you?
Many of us in public health are concerned about social justice and concerned about populations at risk. The different thing about AIDS compared to many other public health problems is the centrality of the importance of the people and their ability to protect themselves, and the way society prevents them from doing that.
When you realize that a society you live in or a community you live in is actually either actively or subconsciously hampering public health efforts, it becomes hard not to become enraged by that. How can we say, for example, that gays shouldn't be promiscuous, that they shouldn't be allowed to be together? How can we say that addicts shouldn't share needles when there are no needles except those that can be shared? How can we say that people should get tested and get treated for AIDS when they have no health insurance?
You very soon find out that in order to do your job, in order to prevent the AIDS epidemic, in order to stop what is now the fourth leading cause of death [in the world], you have to become the people themselves. You have to understand where they're coming from, and you have to see it through their eyes, along with your own medical advice. You should be tested, but you have to be protected and empowered. ...
... [In the early years], did you have enough resources [at the CDC to fight AIDS]?
When Ronald Reagan became president in 1981, there was double-digit inflation, high unemployment and a strong commitment to defense spending at the expense of the discretionary programs in health, including public health, including the CDC. The Centers for Disease Control and NIH [National Institutes of Health] were under great pressures in the early 1980s to make do with the budgets that they had. It wasn't really until 1984 or so that the budgets began to rise enormously to confront the AIDS situation.
And how did that translate into resources to you? ... What difference would it have made if you had more?
We were fortunate, CDC, to have flexible EIS [Epidemic Intelligence Service] officers and flexible scientific support, but we lacked a lot of staff support and travel money and money to do important extramural research in the beginning. The same was true at NIH, although they were somewhat better off. Additional money in the beginning could have been used to track the disease and to talk about it more, to produce public information activities.
So if you talked about it more, what would you have said?
I think that the trick in the beginning was getting America to pay attention to the problem. We now know that as we spoke about the problem, people thought we were overestimating it, when in fact we always underestimated the problem. AIDS has been chronically underestimated in terms of this overall impact, and I hope we're not doing the same today. ...
Reagan had a press conference in '85, and the briefing paper he got, which I have, says, "As far as our best scientists have been able to determine, the AIDS virus is not transmitted through casual contact." John Roberts, who as you know is now Supreme Court chief justice of the United States, he was a lawyer on the White House staff. He wrote back: "I would not like to see the president reassure the public on this matter only to find out later that he was wrong. We should assume that AIDS can be transmitted until it's demonstrated that it cannot be." ... What's your reaction to Roberts saying that?
Well, I recently read about the interaction of what Chief Justice Roberts, who at the time was a very young attorney and political appointee who was providing political advice to a president, which apparently trumped the best scientific evidence. I think that's sort of where we stood in those days. The public health problem was a problem, and it was recognized enough for the president to have a press conference, but the political advice from, at the time, a fairly inexperienced lawyer trumped the best scientific advice from within the administration. ...
Public health is in a political process of consensus building. You can't simply trample over cultural values and political beliefs. But some things are more important than the political debate, and true leaders are usually judged by their ability to rise above the fight and to develop consensus on issues, which are more important than partisan issues.
[Who is an example of such] a leader that you can think of in the world?
We've seen President [Yoweri] Museveni in Uganda, the president of Botswana [Festus Mogae], the leaders of Thailand during a time of crisis in the AIDS epidemic have come forward and said: "Put aside your prejudices. This disease is too important for us to debate about. It's important for us to act on it."
... What is targeted prevention, and why is it important for prevention messages to be targeted?
I think we've learned before AIDS and during AIDS that it's very important to target prevention messages to people where they are. The most effective way to change and alter behavior to a safe behavior of people is with their peers. Not always, but often, women listen to women; youth listens to youth. Young gay black men often trust other young gay black men. People in different countries in different cultures speak each other's languages. and they want to know the truth from people they trust.
Are there studies that prove that this kind of test-based and targeted prevention actually works?
It became quite clear that different populations had higher or lower risks of acquiring HIV and of getting AIDS. It became important from an economic point of view, an effective point of view, to put the prevention resources where the greatest risk was, and research soon showed that it was extremely important to be culturally sensitive to different populations, to work with populations in a trustful way and to include people at greatest risk. This, of course, has been known from the Alcoholics Anonymous literature; it's been known from many histories of immunization campaigns and providing health care to people, social services to people, that it's very important to work in the cultural setting and be culturally sensitive. ...
I always thought it was particularly silly to think that promoting condoms was promoting sex. Anyone who's ever used a condom would not see that as something that they would want to do. Condoms are not inherently pleasurable. As a matter of fact, promoting condoms tells people quite clearly that there's a risk.
The favorite sentence of mine was, "Don't ever think of having sex without a condom." It makes people think about the risk of having sex, and in fact, these comprehensive education programs actually are the ones that are most successful at providing a delay of sexual activity among people. The irony is that promoting condoms actually promotes abstinence.
Promoting condoms promotes abstinence? Explain.
It became clear when comprehensive sex education programs and HIV education programs were implemented that the programs that actually taught people about the effectiveness of condoms and the risk of HIV resulted in a greater delay in onset of sexual activity among teenagers, for example, than programs that concentrated only on abstinence. It's the comprehensive program that teaches both risks and teaches the effectiveness of condoms [that] is more effective in promoting abstinence than abstinence programs. ...
The first George Bush, as opposed to Reagan, what did we see there? What are the important things that happened during his administration?
The first few years of the Reagan administration was a period of neglect, if you will, in terms of the public interest in AIDS. The second Reagan administration, there was panic and growth of opportunity, and also a time when there were a lot of scientific discoveries.
By 1990, there began to [be] complacency. AIDS was leveling off, although at a very high rate with large numbers of cases and deaths, but the horizons were becoming clear. The public was no longer panicked in the United States, and it appeared that people could understand who was at risk and who wasn't. People began to lose interest in AIDS. The Democratic Congress was responsible for many important landmark legislation during that time period: the [Americans with Disabilities] Act, the Ryan White CARE Act, the Fair Housing Act. But overall, the country was beginning to go to sleep.
People began to say: "Well, I'm not homosexual. I have not used drugs. I'm not a young minority man or woman. I understand that I won't get it. The blood supply is safe. And it's not growing at the rate it was." Now, of course it was exploding throughout the world, exploding in Africa, on its way to becoming a very major cause of death in the world, but it was leveling off in the United States and Europe, and people began to put it in perspective and go back to their daily lives.
You're not saying that it ceased to be a problem here or in Europe?
No. AIDS, of course, was leveling off at a rate with 40,000 deaths per year, 60,000 cases per year. The United States had four times the rate of any other industrialized country. As of yet, there was no highly effective therapy and no vaccine. But the attention to the problem was moving away, moving on to other public health problems. ...
Why do we in the United States always focus on science? We hope science will bail us out, and why is that?
We seem to think, with health problems as with other things, that science and technology will always save us, even though in the realm of human endeavor, it always comes back to people and our relationships. We have a sexually transmitted infection that has become the fourth leading cause of death in the world with people having sex in a sea of personal ignorance, not knowing who's infected and who isn't. Something as simple as everyone knowing if they're infected or not, which requires, of course, hundreds of millions of tests, can't be fathomed. It's safer, of course, to go back to the laboratory to work on a vaccine, to work on a microbicide, only to let someone else later have to deal with the human-to-human problems.
So it's easier politically, financially? What are the costs and gains to turning away from prevention or from the human aspect to just focusing on the science?
Throughout the world, it's extraordinarily difficult to deal with human sexuality and to deal with resource scarcity. How can we prioritize something that's sexually transmitted over some other aspects that are related to poverty? How can we get communities to focus on a problem for which they have so little control? How can we get different cultures and different religions to place the health of the population over their own concerns about sexuality and morality? This takes an enormous amount of social capital, and it's social capital that few are willing to spend.
So is that the function of leadership?
The function of leaders is to rise above this, to develop consensus around things that people can agree upon -- that AIDS is a horrible disease, and it's a horrible disease that can be prevented if we put our preconceived notions behind us and say: "We know how we can prevent this infection. Let's accept each other. Let's accept AIDS. Don't accept the inevitability of the transmission." ...
Do we know that prevention works?
We've seen several examples from individual studies and from population-based studies that prevention can be highly effective. In the large scale, the early 1980s saw a dramatic change in behavior in the gay community in the United States, a revolutionary change that was studied and show[ed] a tremendous drop in the numbers of sexual partners, a precipitous decline in sexually transmitted infections and eventually a decline in HIV infection itself. ...
The most dramatic national prevention effort was in Thailand, where national leadership paid attention to the problem and showed that sexual transmission between prostitutes and their clients could be interrupted tremendously, with an 80 percent drop in HIV infection over a period of time.
Now, the gay community in the United States and Europe and the heterosexual community in Thailand are both known for their openness about sexuality, openness which undoubtedly and unknowingly led to increased spread of AIDS in the early years. But it was that very openness, that very openness about sexuality, which led to effective prevention efforts. ...
[What lessons have you learned over the years?]
One lesson that I've learned in 25 years is that people really have made the difference in the AIDS epidemic. Most remarkable are the people with HIV themselves, some of those who have died, and they've died as real leaders with us: Ryan White, Arthur Ashe, [early activist and self-described "AIDS poster boy"] Bobbi Campbell; and those who have been saved by science, if you will, those who have been saved by highly active antiretroviral therapy [HAART], people like [activist] Zackie Achmat in South Africa, Magic Johnson; people who are scientists themselves with HIV. They've been real leaders in the epidemic. They've taught us the importance of the disease. They've been with us shoulder to shoulder. Sometimes we've stood on their shoulders in fighting the disease. ...
The AIDS epidemic teaches us that it's essential for us to rise above our differences as people, our differences as gay and straight people, as men and women, as minorities, as majorities, as Africans, as people of different religious preference. The virus proceeds without these differences. The virus spreads around without prejudice, and in order to combat it, we have to rise above our prejudices. We have to say there are things more important than this. In fact, that lesson is a human lesson. It's a lesson that makes us better people and makes the world a better world. ...
[What is the future?]
... It's important, I think, for us to make progress in AIDS, in preventing AIDS and treating AIDS patients and dealing with the stigma to constantly redefine the unacceptable, to constantly tell ourselves that we can do better; to be knowledgeable that innovative science has overcome skepticism time and again; that we can do things that we didn't think we could do. We can be better people than we thought we can be. But it takes leadership, and it takes commitment. I'm reminded of Winston Churchill's commencement speech, and a paraphrase of that for us would be, "Never give up." Never, never, never, never, never give up in the fight against AIDS. Never give up. ...