Analysis, Interviews, and ReviewsArchive
May 20, 2008
Interview: AIDS Journalist Helen Epstein on The Invisible Cure
In 1993 a young molecular biologist named Dr. Helen Epstein, went to Uganda to do research for a biotech firm that hoped to develop a vaccine against HIV, the virus that causes AIDS. At the time, 18 percent of Ugandans were HIV-positive, a rate nearly ten times higher than that in any other country outside of East and Southern Africa. What was particularly striking was that the majority of Ugandan victims were ordinary men and women, many of them married or in committed relationships who did not engage in any of the risky behaviors, such as prostitution or IV drug use, that Western aid agencies maintained put people at risk of AIDS.
Ultimately the vaccine research effort in which Dr. Epstein participated failed, but during the next fifteen years she traveled throughout East and Southern Africa to report on the HIV/AIDS crisis for The New York Review of Books, the New York Times Magazine, and other outlets. What she discovered, and writes about in her book The Invisible Cure: Africa, the West and the Fight Against AIDS, is that the countries hardest hit by AIDS were not those in which people were especially “promiscuous.” Over a lifetime people in Western countries have more sexual partners, on average, than do people in Africa. Africans do seem to be more likely than people in other world regions, however, to have “long term concurrent” sexual relationships in which one individual might have more than one long-term partner at one time, with those partners overlapping for months or years. Concurrency links people together in a giant web of ongoing sexual relationships that creates ideal conditions for the spread of HIV; if one person in the network contracts HIV, everyone else is put at risk.
Epstein’s book makes a compelling case that the practice of concurrency has profound implications not only for the spread of HIV, but also for how the disease is perceived by those in the grip of the epidemic. Western aid agencies failed to understand these implications, and most of the programs they supported not only failed to reduce the spread of HIV but also reinforced the stigma, shame and denial surrounding the disease.
What Epstein didn’t know when she was in Uganda was that the HIV infection rate was dropping anyway, even without a vaccine. In the mid-1980s the Ugandan government launched a “Zero Grazing” public health campaign meant to educate people about how HIV spreads, to encourage compassion for the afflicted and pragmatic behavior change, especially sexual faithfulness. The campaign was linked to a broad-based social movement that brought HIV into the open and helped break up the networks that were spreading the virus – one of the few country-oriented success stories in the world to date.
Philanthropy Action sat down with Helen Epstein to discuss Uganda, The Invisible Cure, and how Western dollars could best make a difference in Africa.
PA: You started as a scientist doing research on the virus for a pharmaceutical company. What made you switch to become a writer who chronicled this epidemic?
HE: I always wanted to be a writer, but I also felt I needed something to write about, so I became a biologist. I made the switch when I was working in Uganda. When it became clear the vaccine I was studying would fail, I realized how complicated the problem of fighting AIDS in Africa actually was. In the early 1990s, there was no treatment for AIDS. There were a large and growing number of people working on AIDS, but most seemed to me to be working on some tiny aspect of the problem. No one was getting to grips with the larger issue of why HIV was spreading so rapidly, and what could be done to stop it. Writing allows you the freedom to ask some of those questions.
PA: You suggest that at the time that no one was asking why HIV infection rates were so much higher in East and Southern Africa than elsewhere.
HE: The question was buried. When the scale of the epidemic in East and Southern Africa first became clear in the mid-nineteen eighties there was this assumption that Africans were having a lot of uncontrolled sexual activity, that the continent was full of prostitutes, etc. There was a lot of irresponsible journalism about it, especially in the West. In fact, the assumption that Africans are promiscuous was based on very little evidence but I suppose it was the first thing that came into people’s minds. It created an enormous backlash in Africa, and made it very hard to talk about HIV at all. Some African governments even instructed newspapers not to report on it. So I think for legitimate reasons officials at organizations like the World Health Organization said, “You know what, let’s not even talk about this. Let’s talk about the global nature of the epidemic and how this is a disease of poverty and any nation is at risk if it doesn’t take care of its own people.” The importance of gender inequality came into the picture later, but for a long time the epidemic was simply attributed, generically, to “poverty”. That is where the idea that India and China were “next” in line for an epidemic explosion on the scale of Africa’s came from. Current evidence suggests this is very unlikely to happen. But back then, no one wanted to grasp the nettle of sexual behavior and explore the possibility that patterns of sexual behavior in Africa might be different—not more promiscuous—but different. Now, however, with 20 million people dead of this disease – and 33 million infected– I think we have to talk about this.
In The Invisible Cure, I try to show that it is possible to do this in ways that are morally neutral and respectful of people’s cultures. I advocate using the language of science to show how networks of concurrent sexual partnerships promote the spread of HIV, and why serial monogamy is safer, even if the serial monogamists are having more partners. Then it becomes obvious that condoms alone won’t stop the virus, because so much transmission is taking place in longer term relationships in which condoms are seldom used. Therefore, a collective shift in sexual norms, especially partner reduction, is crucial. This information is coming far too late for a lot of people though.
PA: The idea of sexual concurrency seems to be getting more traction lately. Since your book came out last year there have been some articles alluding to it in the Washington Post and other outlets, but your book is the first to clearly outline and thoroughly explain the implications of this pattern of sexual behavior. How long has the idea been around?
HE: I first wrote about sexual concurrency in an article in Discover magazine in 2004, focusing on the work of Martina Morris of the University of Washington, who had been working on it for a decade by then. Besides her, Christopher Hudson, a British independent consultant, wrote a series of articles about it in scientific journals in the 1990s, which actually laid out the hypothesis very clearly and said just about everything that I have said. He was totally ignored. I write a bit about him in the paperback edition of my book (The Invisible Cure: What we Missed in the Fight against AIDS in Africa: Picador June 2008). Everyone ignored Christopher Hudson’s stuff back then, and they didn’t pay much attention to Martina Morris either, probably because people had other ideas about how to fight the epidemic. Most people working on AIDS were concentrating on promoting condoms and improving treatment services for other sexually transmitted diseases such as syphilis and gonorrhea that were once thought to increase the likelihood of HIV transmission. We now know those interventions have very little, if any, effect on the epidemic in Africa, so the big agencies are getting pretty worried now and they’re paying more attention to people like me.
PA: To what extent are you finding resistance to the idea?
HE: I don’t find much resistance at all, actually. I have discussed this issue before a lot of African audiences, both with individual people and large groups and I really haven’t encountered any resistance to it. I think it depends upon how the message is delivered, but in general people don’t contradict it. They don’t say, “Oh that’s not what happens here, we don’t do that.” People say, “Yeah, that happens here.” They’re puzzled that it doesn’t happen in the West. They say, “But what about Monica Lewinsky and Bill Clinton, wasn’t that concurrency?”
For all sorts of reasons what happened with Monica and Bill was not concurrency. First, they were not actually sleeping together—there was that whole debate about whether what they were doing was actually “sex” or not. Also, his relationship with her did not overlap for very long with Hillary.
That is not to say that long term concurrent relationships are unknown in the West. There are a lot of married men with mistresses and married women with boyfriends in Western culture. But we don’t know whether they are sleeping regularly with their spouses at the same time. I suspect that in most cases they aren’t. They are still technically monogamous, even if they are “married” to one person and sexually involved with another.
Even UNAIDS’ documents now say concurrency is an important factor contributing to hyper-epidemic situations where you have very high rates of HIV. Yet I think there is still a lot of misunderstanding about it. Many people, including experts, continue to confuse it with typical “promiscuity” which is not what it is. Part of the problem is that the whole discussion of AIDS is tainted by the “culture wars”. Which ever side you are on, whether it is the left or the right, people start with the assumption that HIV is spreading because of “promiscuity”—and then—depending on which side they are on, they come up with different solutions, either abstinence (because you want to wipe out promiscuity) or condoms (because you think promiscuity is fine, as long as it is protected). Both sides miss the point. This isn’t about typical “promiscuity” at all. It’s about behavior that is often considered normal in these societies. If you look at things scientifically instead of politically or moralistically, the problem, and its solution, become clearer.
PA: You make a really compelling case that when Western governmental and non-governmental agencies started funding AIDS programs in Africa, some African governments and organizations abandoned approaches that were working in order to do the things these Western organizations wanted to pay for. An example is the way Uganda abandoned Zero Grazing in favor of condom social marketing and, much later, abstinence. After the Zero Grazing campaign was phased out in the 1990s, the infection rate stopped falling, and has even begun to rise in recent years. A very twisted mind might conclude that the solution is to not have so much money available.
HE: [Laughs] No, I think with AIDS, there was a sudden awakening to this huge crisis and nobody really knew what to do about it. People had a lot of ideas, some of them better than others. It became a kind of free for all. And a lot of the evidence for what had worked in the very few places where HIV rates had fallen, for example the gay community in the United States, or in Uganda, has actually been distorted – and continues to be – by a lot of people whose intentions might have been perfectly good but who didn’t want to look clearly at the evidence. It is a very emotional issue for a lot of people, and there were probably other, financial motives as well.
PA: The tone of the book is very balanced until you get to the chapter entitled “Forensic Science” in which you describe how certain diplomatic groups apparently distorted, or at least misinterpreted the epidemiological evidence for Uganda’s success against AIDS. Then the tone seems to get angry. Were you angry when you were writing it?
HE: Yeah, yeah. You know, there are very few real villains in the book. Even the people who I think mishandled the Uganda data probably didn’t realize how important it was. The story of AIDS in Uganda has been the subject of much stupid, unnecessary debate. The evidence for how Ugandans changed their behavior to fight AIDS in the early 1990s is very clear, but it has been distorted by people on both sides of the political spectrum. That is the story that I try to tell in the book, in particular in the chapter you mention, “Forensic Science” and in the chapter “God and the Fight against AIDS.” “Forensic Science” is about how the left distorted the data on Uganda to support condom programs in the late 1990s; “God and the Fight against AIDS” is about how the right distorted the same evidence to support abstinence programs in the early 2000s. So I guess those two chapters form bookends to that issue.
It is upsetting because the Ugandans themselves actually discovered something quite amazing about controlling this epidemic, and they developed the “Zero Grazing” campaign on their own when they knew they had a big problem on their hands, and very little outside help to deal with it. Their ingenious approach was based on two things: first an intuitive understanding of how the epidemic was spreading and what people needed to do to stop it; and second, community mobilization to support sick people and their families and spread the message that everyone was at risk, not just so-called “promiscuous” people.
But when the big agencies, such as the World Bank and USAID came into Uganda in the early 1990s, they disparaged Zero Grazing, and the Ugandans lost faith in their own approach. The results of the Zero Grazing campaign didn’t become apparent until the mid-nineteen-nineties, and by then a great deal of foreign donor money had come on the scene, along with a lot of very well-intentioned people who really wanted to help. But they had a “We Know Best”, rather colonial and patronizing attitude. They didn’t pay enough attention to what was Uganda had already done, and they ignored or dismissed the evidence that it had worked.
PA: One of the consequences of this “misinterpretation of evidence” you discuss is that various political groups dug their heels in on certain issues. The political left pushed condoms and the right pushed abstinence. Has there been any progress on this entrenchment in recent years?
HE: There has been progress. I think both sides recognize that their own approach is not working. Those who are running programs on the ground in Africa, or funding them – are looking for new ideas, and I hope this will help them be more creative and move beyond this pointless debate.
PA: Misinterpretation does not seem to be an exclusively Western phenomenon. In a recent book, Sizwe’s Test, the writer Jonny Steinberg follows a young South African man around and chronicles his response to the AIDS epidemic in his community and the AIDS prevention and treatment programs that are available just down the street. Sizwe is divided about whether to find out his status, and he refers to a lot of mythical ideas about the disease. For example, he suggests that a demon was sent to sleep with him and infect him. How can an effective prevention effort work if such ideas are culturally entrenched?
HE: I think Sizwe’s Test is wonderful. But I don’t believe ideas are any more “culturally entrenched” in Africa than they are here. Cultures and ideas change all the time. The one thing I would add to the many vivid observations made in that book is that these beliefs are not set in stone. They exist for a certain reason. And the reason is that people in East and Southern Africa do not know – have never been properly told – why AIDS is so prevalent in their communities. They have been told the epidemic is associated with prostitution and casual sex and that they should abstain and use condoms, but they know lots of people who do not practice prostitution, do not engage in casual sex are not truck drivers, are not so-called “irresponsible” people, and yet they are getting infected. That is why so many people in Africa, from the South African president on down to the lowliest community worker are baffled by this epidemic.
Everywhere I go in Africa, people ask me, “Why is this disease hitting here more than in other places?“ Except for Zero Grazing, no HIV programs – and I am talking about everything from the AIDS education kids get in school to community-based condom training – answer this fundamental question. When people don’t understand something they are going to make up rumors about it. But they don’t have false beliefs about measles and tuberculosis. It’s not that they are just a bunch of primitives who have false beliefs about everything. They are basically rational people. They have false beliefs about things that don’t make sense to them.
One of the most surprising and interesting moments for me in Sizwe’s Test was when the author meets this incredible woman who goes from house to house caring for AIDS patients. She says she does it because she feels she is doing God’s work. But when the author asks her about the people she cares for she says something like, “You know they all made mistakes. They did a bad thing, but I forgive them.”
Even she assumes that they all “sinned”, and she works with a very enlightened AIDS program. Yet the fact is that the vast majority of people with HIV did not, according to their cultural norms, do anything “wrong”. Their behavior is at least as continent, so to speak, as anybody here in the US. Probably more so.
PA: What was your response to President Bush’s announcement in January that he was doubling PEPFAR funding to $30 billion?
HE: I think it is important that we do more for public health in developing countries, but we need to do it in a much more rational way. Many AIDS programs are too narrowly focused on delivering ARVs only, when there are so many other things these people need. And the AIDS programs themselves depend upon the sustainability of the larger healthcare system, yet they draw health workers away from the rest of the health care system. The rest of the health care system then falls apart and the AIDS programs sort of pull the rug out from under themselves. The result is that there is a lot of waste, and that is depressing.
The broader issue is that the African health care systems are a shambles. There aren’t enough health workers. Salaries are somewhat higher than they were in the past but they are still too low in too many cases. Drug supply chain systems don’t work. The buildings are often in disrepair. The electricity doesn’t work. The water doesn’t work. Fixing these things should be a priority for any kind of public health program in these countries.
We know that just making simple things work can have a massive [impact]. There was a wonderful program in Tanzania called Tanzania Essential Health Interventions Project (TEHIP) that has managed to reduce child death rates by half just by ensuring such things as a regular supply of appropriate drugs, regular arrival of the salaries health workers and other management issues. It didn’t cost very much, but it made a huge difference in welfare in measurable ways.
PA: I don’t think anyone would begrudge the AIDS programs their money, and yet there is a strain of criticism which argues that AIDS, malaria and tuberculosis, the so-called Big Three, draw public attention away from other diseases, such as diarrheal illnesses, that have a larger impact on child mortality and also cause a lot of illness. Do you have an opinion on that?
HE: I guess what I’d like to get away from is, just as there is a lot of ideological polarization around AIDS prevention, when it comes to treatment there’s a lot of disease-specific polarization. So the TB people are saying, “TB kills more people than AIDS.” And the malaria people are saying, “Malaria kills more people than TB and AIDS combined,” or whatever. And then the diarrhea people are also complaining because no one gives them any money, so on a case-fatality basis they get less money than anybody.
The way around this is to think a little more fundamentally about the functioning of health care systems: The personnel issues, the infrastructure issues, the supply chain issues. As far as I know the [PEPFAR] bill going through congress at the moment does not really address those issues. There is going to be some funding for training of health care workers, but I think it is specifically for health care workers to work on AIDS. So it is an issue of polarization and competing interest groups and it is a debate that is meaningless to these people on the ground, who have problems we can’t quite fathom and that these [AIDS] programs simply aren’t addressing. It is a big problem.
PA: Do you have any example of what some of the large NGOs and governments have done right?
HE: Sure, there is a lot they have done right, and discuss some cases in the book, including The AIDS Support Organization in Uganda which was wonderful and still is. I talk about some of the groups run by the Catholic Church which have been exemplary in the area of AIDS treatment and also in caring for orphans. And then there are a lot of groups associated with the Universities. Columbia, for example, or the University of Alabama or Baylor College of Medicine that are doing very important but rather technical research on the best way to treat AIDS patients in Africa.
I think things will settle down and the programs will improve. My book focuses mainly on this period when there was lots of new money for AIDS but considerable confusion about what to do with it. So in a sense it created a journalistic opportunity.
PA: Microfinance has been a popular area of investment for donor dollars. In The Invisible Cure you describe two microfinance programs aimed at helping women increase their incomes, which would theoretically help keep them from entering or sustaining sexual relationships that have a financial component. But one of them backfired and the other succeeded, but not in the way it was expected to. Is microfinance for AIDS prevention gaining a degree of rationality or is there still a bit of a free-for-all?
HE: Microfinance on its own, I don’t think, is going to have much effect on the epidemic itself, because the amount of money these women earn is very small anyway, and it’s not enough to lift them out of poverty significantly. Also, the trading networks they become involved in can sometimes put them right in the path of HIV. So I actually think it’s dangerous to implement these programs without AIDS education, and without creating a sense of solidarity among these women so that they can figure out how to protect themselves and their kids.
What I am trying to push for, and I don’t know whether the idea is getting across, is that no matter what you do, whether it is microfinance or any other kind of community-based information program, is that you have to bring people together somehow. Microfinance can be a good way to do that because you have kind of a captive audience. You have these women showing up – sometimes men too – every few weeks to repay their loans. So it is a good opportunity to get them together to discuss issues that are of concern to them and the community, whatever it may be. It may be safe water. It may be the fact that the hospital is never open and it may be domestic violence and it may be AIDS.
PA: So if you were a private donor where would you look to put your money?
HE: There are some AIDS and reproductive health programs that are really nicely integrated into the communities in which they work. It just so happens that a lot of these groups happen to be in Uganda, which was always known as the prevention success. But it is also the care and treatment success story of the continent too, because there were a number of community-based groups that very early on started to address the problem of HIV – the health care aspects and the broader social impact – in ways that met people’s real needs, not what program planners thought were people’s needs.
There are a growing number of those around the continent, but the best way to find them is to get on an airplane. A lot of people really want to do good things but they don’t have the energy to do the research to find out what those things are. It is a huge responsibility to give away money because some investments do more harm than good.