Science Correspondent Jon Cohen Sees Perils, Promise in the Fight Against AIDS

[The following is the full text of a 29 June 2004 interview with Science correspondent Jon Cohen, a prize-winning author and one of the world's foremost HIV/AIDS experts. The interview was conducted by telephone by AAAS senior writer Edward W. Lempinen.]

Let me start with a really broad question: As the 15th International AIDS conference begins, what are the crucial HIV and AIDS challenges that are confronting the world?

There are two worlds—there's a rich world and a poor world. And the rich world—which includes the United States, Europe, Canada, Australia, Japan—has an abundance of drugs that can treat HIV. And it's pretty confusing to figure out how to use them most effectively. So the challenge for the clinicians there is to figure out how best to keep people alive with the arsenal of drugs available. And on the research front, there's a huge need for a vaccine. And the impetus driving research and discovery is from the rich world. There's also in the rich world a difference in how prevention efforts work. Education campaigns, condom distribution, needle exchange, things like that—money is not the obstacle. The obstacle is politics.

In the poor world there aren't a lot of options for treatment. The big challenge is to get treatment to people, and there is a massive scale-up underway right now. But as of today, very, very few HIV-infected people in the world who are poor receive drugs or have access to drugs even though the price has plummeted. So those who do have access to treatment, those countries are struggling to train physicians in how to use the drugs, they're struggling to purchase equipment and train people how to monitor people on treatment. Prevention campaigns are hampered by finances and by politics. AIDS is a disease that makes people uncomfortable everywhere, and that's because it deals with sex and drugs. And AIDS is a virus that takes advantage of sex and drugs.

How has the global picture changed since the international meeting two years ago in Barcelona?

In trying to catch up with the rhetoric—the rhetoric has been, 'let's get treatment to everyone.' And unfortunately, it hasn't moved that fast. The real tectonic plate shift occurred in Durban [South Africa] in 2000 when it became clear that prices of generic drugs could allow poor people to receive treatment, and that was four years ago. And I just don't see that much progress. Also, in the last year, there have been very dramatic commitments from South Africa, India, China and Thailand to treat people most in need. Basically, they're following in the footsteps of Brazil, which led the way. And I think it's really heartening that these countries are doing this. I also think that India and China are more forthrightly dealing with their epidemics than they were a few years ago. They're acknowledging the scale and they're also starting to deliver services.

But almost every country, and I would include the United States here, is fighting this virus with one hand tied behind its back because of political agendas. That hasn't changed much. It's changing, but it's glacial, it's excruciating to watch. From the outside where I sit, I just watch history repeat itself again and again. And the virus just doesn't wait for anyone—it doesn't care. It doesn't play politics. It doesn't have a brain. It doesn't have morals. None of that matters to HIV. It just wants to copy itself and spread, that's all it wants to do. And it will take advantage of every single opportunity that comes its way. And countries continue to give the virus all sorts of advantages that they don't have to give it.

As the conference in Bangkok convenes and progresses, what are the issues that people are really going to be talking about? What are going to be the defining issues of this conference?

The number one issue will be treatment for all—that's the theme of the conference—and the huge gap that stands between that rhetoric and the reality. There are an estimated 40 million HIV-infected people in the world—it depends on which equation you use to calculate which of those people need drugs now, but it's a pitifully small number who are actually receiving them. So I think that's going to be the big issue. And then the scale of treatment programs follows in the footsteps of offering people treatment. If you don't have trained clinicians, if you don't have proper monitoring tools, you will see what just happened in Hunan province, in China. In 2003 they rolled out a treatment program, without proper training for clinicians, without proper education for people taking the drugs, without proper monitoring, and within nine months time, 20 to 30 people had developed resistance to one of the drugs, 20 percent of the people had dropped out of the program altogether, because of the side effects. That to me is the really sobering lesson.

I think that's going to play out again and again unless countries learn from this. It's well known what the virus does with these drugs. It gets around them. The question is: How quickly will it happen? If you do things in a clever way, you stay ahead of the virus. This is a game of jumping from river stone to river stone to river stone. That's how you survive. If you're on a river stone and the river is rushing, you just have to find the next stone to jump to when your drug treatment fails. If there are new drugs available, different drugs in the pipeline, different drugs being manufactured at a price you can afford, or your government can afford, you can get to the next river stone. But you have to think that way. You have to look at it that way. You have to always be looking at it as crossing the river, and how do we get to the next stone?

I don't think enough people who are running programs, specifically in poor countries, really understand that. I think a lot of clinicians in wealthy countries also have difficulty really understanding how to use the arsenal of drugs. And there's a tension too between prevention and treatment, and the tension is very acute and growing in many ways. There is a limited pie there of resources.

You've just spent a year traveling in Asia and writing about Asia—when you think back over that travel, what are the defining images?

The most defining thing is that each epidemic is distinct. And I don't mean just that India is different than China. I mean that the states in India are different from each other. Cities are different from one another. I could list for you the characteristics of each city's epidemic. And they're so distinct—it's just remarkable. That's the No. 1 thing, how much variation there is in how the virus moves around communities, even within the same borders.

India is a very dramatic example. In the northeast, a remote region that few outsiders visit, it has a Muslim insurgency and people are afraid to go there and there are restrictions on getting in. There's a huge heroin problem because of the proximity to Myanmar [formerly Burma] where the heroin is produced. So there's a huge number of HIV-infected injecting drug users. Further south, in Calcutta, there's really not much HIV among the injecting drug users. Further south in Chennai [formerly Madras], there is an HIV problem among injecting drug users, but they shoot a different heroin—they shoot the brown heroin that comes from Afghanistan, not the white powder that comes from Myanmar. Across the country in Pune, where they have one of higher prevalence rates, there's not heroin or injecting drug users. But there's an explosive problem among sex workers. In Calcutta, the sex workers have organized themselves and pretty much kept the HIV prevalence down to about 11 percent, as opposed to about 50 percent in Pune. So it's astonishing to me how these social forces really shape what the epidemic looks like. This isn't influenza or polio, which are casually transmitted. This is something that's behaviorally transmitted. So the behavior of a place determines what the epidemic looks like. And that's sort of an astonishing thing on the ground.

I go looking for places that are really hard-hit, so I end up seeing the most complicated situations and I end up seeing things that are incredibly dire, often times, and really, really sad. Tambaram hospital in Chennai has about 10,000 AIDS patients a year, and it's just a terrifically tragic place. They try to provide the best care they can, but it's a huge undertaking. They have five AIDS wards there that are filled to capacity, with three dozen beds in each one. I've only seen something like that in sub-Saharan Africa. And I didn't see anything else like that in Asia.

In China, one thing that surprised me, when I interviewed sex workers, is that the epidemic is young there. It really hasn't exploded in terms of symptomatic disease yet. It will—there are enough infected people in the region that I know that it will. But some of the places I went to really didn't have problems until 1996. With a lag of eight to 10 years between infection and symptoms, you wouldn't really expect much disease yet. I was with a group of sex workers one night in China, in Guangxi province, and I asked them whether they knew anyone who was HIV infected and they all said 'No, no one.' And I said, 'Come on…' People often don't tell the truth. And I couldn't believe it. But there was a researcher there with me and he had done a study there and he didn't find HIV in any sex workers unless they were shooting heroin. Now, that will change, and it will change rapidly, but it gives me a clearer sense of where China is at right now.

And Myanmar, it used to be the economic engine of Asia, it used to be the Singapore of Asia. The junta has taken control of things there—the economy has collapsed. There, AIDS and other health care services are among the most desperate in Asia. And it again resembles Africa. Although it's more dispersed than elsewhere because government hospitals can't even really provide care. So Médecins Sans Frontières [Doctors Without Borders] ends up providing the bulk of AIDS care in some locations.

I was astonished by Cambodia having the highest prevalence in Asia, and not having injecting drug users. It didn't make sense to me. I had always thought of injecting drug users as gasoline on the fire—why would the country that doesn't have heroin have the highest prevalence? It's a real puzzle. I think the explanation is that Cambodia, like Thailand in the late '80s and early '90s, has a really thriving sex industry with a lot of clients and a lot of sex workers not using condoms and that led to the dramatic spread. In Vietnam I saw—there's a park in Vietnam I'll never forget. It was just littered with needles and syringes. I had never seen anything like that—literally hundreds of them, and they cleaned the park every week.

So, that's sort of a quick tour. One other thing I didn't mention is that Thailand is often clapped on the back for its great prevention campaign, and it indeed deserves the praise. It promotes condoms more aggressively and more openly than any country in the world. I was there in '95, when the epidemic was spiraling out of control, and I really saw Thailand change its course, its history. But Thailand has done next to nothing for injecting drug users. So its success has a big asterisk next to it.

Tell me about Tambaram. When did you go there? What were you thinking as you toured the place? What was your emotional reaction?

We spent a few days in Chennai early in our trip, and then returned on the last day specifically to spend plenty of time at Tambaram. It was the end of January, and the weather was warm but comfortable. We arrived on a 10 a.m. flight and left late that afternoon. It was a Saturday, and the mood was relaxed.

I move quickly on these trips, often visiting three or four different places in one day. We start at sunrise and go until late into the evening. I had heard from many people about Tambaram, and knew that I wanted to spend as much time there as possible.

Tambaram packs an emotional wallop. It reminded me of a TB ward that Malcolm [photographer Malcolm Linton] and I visited in 2000 in Gulu, Uganda. Other than that, I had never seen so many people with late-stage HIV disease in one place. It's one thing to meet with 10 HIV infected people who have symptomatic disease. It's altogether different when there are between 100 and 200, which was the case in both Gulu and Tambaram. For most HIV infected people, they live 5 or 10 years with no symptoms whatsoever, so the disease remains largely invisible. Tambaram makes the invisible visible.

When I work in large AIDS wards, it of course depresses me—and I would have deep suspicions about anyone who didn't feel saddened by the helplessness—but I also feel like, on some level, we are helping. When I go sailing and I'm piloting a boat, the motion of the sea doesn't make me ill. It's the same sort of feeling when I'm at work in a depressing situation: While I'm doing my job, it blunts the dizzying sensation of meeting many, many people in one place who I know only have weeks or days to live. I'm also buoyed by the wisdom that comes with great suffering, and I meet people everywhere who impress me with how well they handle the crises of life with AIDS.

Tambaram is how my mind's eye imagines the Black Plague: long rows of filled beds with dying people. The clinicians were fantastic—smart, humane, and generous. But this is a nasty virus, and it still takes a lot of money and know—how to keep HIV at bay. As the doctors there stressed to me, they're doing the best they can. I could see that. It's just that the best they can offer right now isn't enough.

You mention new advances in the official response to AIDS in Thailand, in China, in India. What is it that causes a government to shift from complacency to a more aggressive approach? I'm especially wondering about the cultural factors in Asia, if I can generalize, that might keep a country or a community from an open and constructive admission of the problem.

It's a lot like the stages of death. Most every country, and I would include the United States, begins with denial. And people would like to think, 'Oh, this will never happen to me.' The biggest motivator is fear. When countries start to become afraid, and see communities that are suffering, that compels change. Why the change occurs in each country has really complex variables that are true to each place, but that don't speak to a continent.

One thing that has changed things dramatically for the world is the plummeting price of drugs—no question, that's been a huge engine of change. But China's attitude toward HIV really has changed to a large degree because of what happened with SARS, and the international criticism it received for not being open and aggressive in fighting that outbreak. India didn't have SARS, so that doesn't explain India's shifting attitude. But I think India has become afraid of the potential in a way that they weren't afraid a few years ago. Thailand also had fear; it saw a lot of devastation early, it saw communities really being walloped.

Those are the large forces that lead to change. The other thing is just the passage of time. It's taken time for people to accept it. Think about it—in Asia, who really drives the epidemic? Well, it's driven by sex workers and mostly by their clients—that's what really drives it. And so it's easy for people to be moralistic and to say, 'You got yourself into this—who cares?'

Countries come to realize then, that, first of all, sex workers and clients are part of the population. They're people too. And much as you might want to marginalize them, they have children, they have spouses, and those people often become infected often having done nothing that any moralist would say is wrong. In India, there's a saying that a woman's greatest HIV risk factor is getting married. Women are largely monogamous there. Many, many women have become infected after their husbands went to sex workers. Countries just start to accept that they can't just put this disease in a corner and say, 'This is something that happens to bad people.'

Now, it goes back to what I was saying before: The virus doesn't respect orders from politics, from morals, from religion—it doesn't care, it just doesn't care. And I think countries come to see that.

There have been reports in recent years—and you've touched on this in your writing—that indicate that the risks of the spreading epidemic in Asia were extraordinary, if only because of the size of the population. And yet, I come away from reading your stories with the sense that the worst-case scenario hasn't happened yet, and that those predictions were generally too pessimistic. Why haven't those predictions come true?

To begin with, the research into the spread of the virus is pretty thin most everywhere. There's really not good data in many places. So if you want to write a report saying that the epidemic is skyrocketing in China or India, you can do that, or you can go in the other direction. The data will support either argument. Some of high-pitched documents that have come out are political in nature. They're meant to prod governments to change. And if they overstate, then I think the authors of these reports think that's ok, because what we're really trying to do is take advantage of this window of opportunity.

I think that is a huge open window right now, but I think it's closing.

Why is it closing?

It has to do with how far a virus spreads in a community. And once you get to a certain level of spread, like South Africa, where you have 20 percent of the adults infected, you can't base your prevention program around targeting those 20 percent of the people, for example. It's just too large a group. But if you only have, as is the case in China now, somewhere around a million infected people, you can target those people for prevention care. You can target high-risk groups, like injecting drug users and sex workers, and really make a huge difference in preventing a widespread epidemic. That's where Asia sits right now. China is a very dramatic example of that, where a little over half of the infected people are injecting drug users.

One guy I was driving with through one of the heavily infected injecting drug-user areas, he said, 'We know everyone in these villages. Everyone in these villages knows who shoots up.' Plus the government has compulsory camps for users, so they have peoples' names. If they wanted to offer clean needles, drug substitution programs, they could probably put everyone's name in a one-megabyte file. It's do-able. You have to be incredibly careful not to violate human rights, and that's a serious concern in China. People inside and outside worry about the government behaving in a draconian way. But there is a very compassionate way to go about helping people who are at a high risk of becoming infected. And it's distinct from sub-Saharan Africa, where the rings of spread haven't gone that far from the high-risk group. They will, they will, but it takes time.

Are there areas within Asia, if not Asia generally or India or China generally, that will see rates of infection as are seen in sub-Saharan Africa?

That's a big debate. I'm not partisan. It looks to most experts as though the biggest threat is in Papua, the island of Papua that's divided between Indonesia and Papua New Guinea. And the reason is because Papua, like sub-Saharan Africa, has many women who have multiple partners. That's what separates African from Asia in the minds of many leading thinkers I spoke with. Asian countries by and large do not have women who have multiple partners unless they are sex workers. Sub-Saharan Africa does. So the combination of men with multiple partners and women with multiple partners, as well as inter-generational sex between older men and younger women, are characteristic of sub-Saharan Africa. And those features aren't in most of Asia. That doesn't mean you can't have a pocket where you get to a really high prevalence—you can, and it happens. But there's nowhere in Asia that has anywhere near what I've seen in sub-Saharan Africa.

I was in an antenatal clinic in KwaZulu-Natal [in South Africa], where the infection rate in pregnant women was 38 percent. In Asia, alarm bells go off when the infection rate in an antenatal clinic goes above 1 percent. There's nowhere I went to in Asia that has anywhere near 38 percent infection rate—there's nothing like that. So, on the one hand, you can say Asia doesn't have Africa's problem. On the other hand, when you get to a prevalence in an antenatal clinic of 1 percent, you've got a problem. You've got a lot, a lot of people who are infected in the general population. So I don't mean to suggest at all that Asia doesn't have a serious problem. It does.

In the United States, half of 1 percent of our population is infected. You have to put it all in perspective. Cambodia, at its peak in 1999, was at 4 percent—that's eight times higher than the U.S. Now of course it's a tiny country compared to the U.S. Thailand has a prevalence of about 2 percent—it's not a tiny country. That's four times higher than the United States. Those difference matter. That's a lot of AIDS. And when you get into specific communities, sex workers or drug users, and you see 50 percent of the people infected—you can say, 'That's not the general population,' but at some point I don't know what that term means. When I'm in Manipur in India, where there are a tremendous number of injecting drug users, what's the 'general population'? I don't know—they're humans, they're part of the population. They're not general? If enough people use heroin, then it becomes the general population, know what I mean?

What do you see as the most pressing problems in Asia right now in terms of controlling and treating HIV and AIDS?

The most pressing problem is identifying who's infected, because most countries don't know. And again, you can point to the United States. I don't think the United States has identified more than half of its HIV-infected people. Or, I should rephrase that. I don't half of the HIV-infected people in the United States know they're infected. It's an infection you can have for a long time with no knowledge that you have the bug, and that's true everywhere, and it's especially true in poor countries, where they don't have widespread testing and education available. I met many, many people in many countries in Asia who first learned about the disease when they learned they were infected.

Now, that's just a brain-twister to me. How can it be that in 2002 or 2004 that you haven't learned about the disease AIDS? Well, that still happens. And I met a lot of people who told me the day they learned of the disease was they day they were told they had the virus. And the reason people end up getting tested is often pregnant women—they'll have a routine screening, and then the woman goes home and tells her husband, who then learns. That's the single biggest obstacle, simply encouraging people to voluntarily receive the test. When someone knows they're infected, the evidence shows they do take preventative measures. By and large people don't want to spread the virus to other people. So I think that's got to be the No. 1 challenge.

Beyond that, it's getting treatment to people who need it. Being frank about sexuality with teenagers, which in many places is a big problem. Openly addressing the fact that countries have injecting drug users and gay men, both high-risk groups that several Asian countries want to pretend don't exist. I mean, they really play ostrich in a really silly way. I mean, 'We don't have that here. No no no no no!' I see it again and again.

What are the greatest causes for optimism?

The greatest cause for optimism is that the virus hasn't spread that far yet. So there's a terrific chance to use the new treatment programs to encourage people to receive tests. If you can offer drugs, there's more likely people will receive a test, because there's something you can do for them. If you can take advantage of this momentum to educate populations, and get to people who need drugs, and get condoms to people and educate people how to use them, and get clean needles to people and educate them why they should use them, I think it's the optimism that comes from the window of opportunity.

And then there are some, on the edge of research there are some really interesting possibilities. Research equals optimism, to me—that's the whole idea. Things fail in science. Most experiments don't turn out the way people want them to. But HIV has seen some really important research advances over the past 10 years. In 1994, the numbers showed that drugs had stopped transmission from mothers to infants—that was a fantastic advance. In 1996, cocktails of drugs came out that really put the disease at bay for several years—that was a terrific advance. In 2000, the drugs plummeted in price so that much of the world could afford them. That was a terrific advance.

The far-flung research questions now that I think provide the most hope are the possibilities of having a vaccine; the possibilities of having a microbicide that can either be put in the vagina or rectally, to prevent transmission; the possibility of a drug that could be given to uninfected people to provide protection which is being studied in Cambodia in groups of sex workers. And the possibility that that might even allow people to develop immunity, which is a sort of pie in the sky sort of idea, but it's also possible. And it excites me as a research question. So there's still a lot of things scientists do not know about this virus—how it moves from person to person. There still can be really important discoveries that can translate into better-designed drugs and better-designed vaccines, better-designed microbicides, that can quickly make a big difference if the world organizes itself. And in the vaccine front, the world has started to do that with this new enterprise sketched out in a policy forum in Science last year. I think it's those sorts of organized efforts that give me the greatest sense of things improving.

An editorial in the 25 June 2004 edition of Science, by Joep M.A. Lange [president of the International AIDS Society and co-chair of the 15th International AIDS Conference] and Vallop Thaineua [chair of the conference and Thailand's permanent secretary of the Ministry of Public Health], had an interesting line: "The current U.S. unilateralism does not help to mend the situation." Do you agree with that, and do you see it playing out in the field?

I think the U.S. has frequently behaved as if it's somewhat off by itself. The decision by the U.S. Department of Health and Human Services not to send more than 50 scientists to the conference, and not to fund the conference as it has in the past, I think in part is what they were writing about—sort of a veiled reference to that. But you know, the U.S. still doesn't have needle exchange, it doesn't allow its funds to be used for that or for condom distribution. And its emphasis on abstinence über alles—abstinence is the answer—just is not in keeping with the international campaign. And it's not that the international campaign is arguing against that, but the campaign argues that that alone will fail.

So that's one side of the coin. The other side is that the U.S. has increased its contribution to the global effort. Some people think there's far too much game-playing. One example is this question of what's called bio-equivalency. Are the generic drugs the same as the drugs made by the big pharmaceutical companies? And the U.S. has insisted that bio-equivalency testing be done before U.S. funds are used to purchase generic drugs. A lot of people just see it as the U.S. just helping Big Pharma, as a thumb in the eye.

It's hard for me to become really partisan about these things. I'm more interested in observing both sides and putting the facts down. The facts are that this administration in particular has angered the international community more than the preceding administration did for these sorts of reasons.

Are there any other issues that you think are important to discuss?

The only thing is about the need for money to address many of these problems. So many problems in the world cannot be solved by money. And HIV prevention and treatment is still starving and the research is still starving in many, many quarters, and many places in Asia. Solving the disbursement of the funds—the Global Fund was set up to do that. I think it's a really intriguing structure. The Global Fund basically asks countries to spell out what they need and forces them collaborate with everyone within their countries, all the stakeholders, and then disburses the money. It's a unique mechanism and I think it's a powerful mechanism.

But the Global Fund is still desperate for money. The U.S. says, 'Well, percentage-wise, we give more than other countries.' I think there's a serious question to ask the U.S.: Why doesn't the U.S. say unilaterally, 'We're going to do more than anyone else, gleefully, because this is such a great opportunity'? I think that's a serious question that nobody's addressed.

6 July 2004