30 years of AIDS – An interview with Helen Epstein

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Freelance writer and independent public health consultant Helen Epstein.

Helen Epstein is a freelance writer and independent consultant in public health. Her articles have appeared in The New York Review of Books, The New York Times Magazine, Granta and elsewhere.  Her book The Invisible Cure: Why we are Losing the Fight against AIDS in Africa was a New York Times notable book of 2007. She has taught public health at Columbia University and Bard College, and has served as a consultant for numerous organizations including UNICEF, The World Bank and Human Rights Watch. John Donnelly interviewed Epstein as part of Science Speaks’ series on the 30th anniversary of the first reports of what would become known as HIV/AIDS. She talked about the role discordant couples and concurrent relationships play in driving the epidemic, a hotly debated issue.

How did you first get involved in writing about AIDS?
I was working as a molecular biology post-doctoral fellow at the University of California-Davis in the early 1990s and I began to think about how I wanted to spend the rest of my life. I was fascinated by biology and science, but I also was fascinated by people. I had friends who had died of AIDS, and I knew the epidemic was really raging in Africa. I wanted to apply all I had learned as a biologist to the problem. In those days, there was far less research going on in Africa than there is today. But I heard about a team from the University of California-San Francisco working at Mulago Hospital in Kampala, Uganda. I joined them as an unpaid volunteer to set up experiments to explore the serotypes, the different types of HIV circulating, for a vaccine study. When I got there I realized that developing a vaccine was going to be very, very complex. Nonetheless, I became fascinated by the problem of HIV, and I kept working on it for the next two decades.
 
What was your first story?
It was a memoir of working on that vaccine project for Granta magazine in 1995.
 
What do you remember about the story?
What I tried to do was tell my own personal story, within the larger quest for an AIDS vaccine for Uganda and the world. I wanted to use that to tell a larger story about the country, and why the AIDS crisis was so severe at that time. One of the themes that came out of that piece, and stayed with me, is the disconnect between the good intentions of people who go out there to help and the realities of the problems in those countries.

Why was there a disconnect?
We have enough difficulty trying to solve our own problems here in the U.S. Problems in other countries are the product of so many things – their culture, economy, relationships with the rest of the world. It’s hard to imagine a group of Ugandans could come here and solve the problems in our health care system, or with our economy, after all. You can see why so many of our efforts backfire, and don’t work as well as they might.  We tend to over-theorize things rather than really listen to the people in these countries.

Over the course of the epidemic, what stands out as a moment that was most important to you personally?
That’s easy. I had written a few articles about AIDS, and at the time, publishers were keen to have a book written about AIDS in Africa. I got a contract, but at first it was very hard for me to see the big picture, to understand what was going on. There was this critical moment, an intense email exchange with a group of researchers, including Daniel Halperin, Rand Stoneburner, Vinand Nantulya, and Edward Green. It was about what had happened in Uganda, and why HIV rates had fallen by about 60 percent there during the early 1990s. This was quite remarkable. I had been living in the country at the time, but the results only came out years later, and I had not thought about them much; I had assumed it was a combination of general behavior change, and condom use, and other things. That’s what journal articles had suggested.

But according to these researchers, it was actually partner reduction that played the major role and condoms played a minor role. Daniel and Rand had independently re-analyzed a set of important sexual behavior surveys from the late 1980s and early 1990s, and this is what they found. This contradicted earlier analyses of those same surveys, which suggested increased condom use was the major cause of the decline. Later on I teamed up with an economist at Princeton and reproduced their finding. This raised an important paradox. Surveys showed that Africans didn’t have more sexual partners over a lifetime than heterosexual people in the West – some surveys suggested they had fewer.  What was fueling the AIDS crisis in the gay community in the U.S. was clear: a lot of partner change. One hundred partners a year was not unusual in the gay community in the early 1980s. But this seemed not to be the case in Africa. So what was going on?

I was speaking to some other researchers who had recently seen a presentation by Martina Morris at the University of Washington on her theory concerning concurrent sex partners. It wasn’t only the number of sexual partners that was driving the epidemic, but also the degree to which sexual partners formed a network of overlapping long term relationships. If true, it would resolve this extraordinary paradox, and explain why partner reduction had such a powerful effect on the HIV rate in Uganda, and condom use had a relatively low effect. I later went back to various countries, including Botswana and South Africa, and interviewed ordinary people, who were identified through HIV support groups, and other organizations, and were willing to talk about their lives, and about patterns of sexual behavior in their communities. It was a casual process, not systematic, but what they told me did support the concurrency theory. When I discussed the theory with them, it was like a light went on in their heads. This includes senior health officials in some African governments. They were struck by the theory. That became the theme of my book.

Many journalists say that so much has been written about AIDS that they, and their editors, are fatigued. What’s important to cover now?
For me, as far as AIDS goes, the most important thing now is to really evaluate and test the concurrency hypothesis, because it has crucial implications for HIV prevention programs. The people most likely to do that are the scientists, policymakers, and so on, and they are not going to be influenced by journalists at this point, but they might be influenced by peer-reviewed articles.

In addition, it would be great if Africans themselves wrote more about AIDS in their own countries. Most of the stories I read in African newspapers now tend to be from a distance, citing statistics, reporting on some expert’s speech, but not the kind of really deep, descriptive writing such as that of say, Johnny Steinberg (a South African author).

During the AIDS crisis in the U.S., in the 1980s, the predominately white gay community responded in so many creative ways to this problem. So many people were writing poems, essays, plays about AIDS. When I was in Uganda in the early 1990s, I saw the same thing, if in an African way – candlelight vigils, all day meetings, murals, plays. I think it is no coincidence that Uganda’s HIV infection rate was falling at the time, just as it was in the U.S.  But this deeper cultural response has been largely absent in other African countries. This silence is unfortunate.

The same thing could be said about African American communities today; there’s a staggeringly high HIV rate, but a terrible silence around AIDS. There’s no way an outsider can motivate behavior change if people themselves don’t want to talk about it. No technical inputs – drugs, condoms, HIV tests, etc. – will have much effect on the number of people who become infected. These things will alleviate some of the suffering, but the path of the epidemic won’t change without a broader internal, cultural response.

One thought on “30 years of AIDS – An interview with Helen Epstein

  1. Dr Mayur Trivedi

    30 July, 2011
    Sir/Madam,
    Hi!
    Helen Epstein’s interest in HIV/AIDS is excellent. Her ideas/ thinking about “Top down” and “Botton up” are good. In fact, both nullify each other: the resultunt is “ZERO”.

    Could you pass on this email to Helen: I am a doctor (MBBS, CHE/P), male, 67, and on top of that President of Aids to AIDS. As of today have written several slogans, songs, sonnets and villenelle on diverse aspects of HIV/AIDS issues.
    Thank you.
    Dr Mayur Trivedi

    Reply

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