A new urgency

With his country at the epicenter of an AIDS epidemic, the special advisor to South Africa's health minister quietly makes his first trip to an important research conference.

Published February 4, 2000 5:00PM (EST)

South Africa is at the epicenter of the sub-Saharan AIDS epidemic. At least 3 million South Africans, or 13 percent of the population, is infected with HIV. In urban areas like Durban and Johannesburg, up to 35 percent of pregnant women carry the virus.

The country is also at the center of a political maelstrom around access to life-saving antiretroviral medications. An ongoing lawsuit brought by more than 40 pharmaceutical firms has South Africa's "Medicines Act" (which would allow the country to produce cheaper versions of life-saving medications) tied up in court. At a special meeting in January, the United Nations Security Council warned of the political instability that could result from sub-Saharan Africa's skyrocketing death rates.

Yet it was with little fanfare -- and without official registration -- that Dr. Ian Roberts, four years into his job as special advisor to South African Minister of Health Manto Tshabalala-Msimang, made his first appearance at the Conference on Retroviruses and Opportunistic Infections in San Francisco this week. The conference -- this year's is the seventh -- is considered a can't-miss stop on the circuit of AIDS research events, drawing 3,200 researchers from around the
world to present on a dizzying array of topics. It's a kaleidoscope of statistics, conjecture and, occasionally, stunning new developments in the field of HIV. For Roberts, it was also the place to start a crash course, of sorts, in state-of-the-art research on HIV.

A slight, haggard-looking man with a penchant for elaborately patterned sweaters, Roberts used the conference for a decidedly informal fact-finding tour, capitalizing on on-site introductions to Tony Fauci, head of the National Institute of Allergy and Infectious Diseases, as well as other experts, and sitting down to dinner with everyone from ACT UP-New
York to Peter Salk. A physician and co-developer of the "abortion pill" (RU-486), Roberts was no stranger to medicine -- or controversy -- when he accepted his appointment four
years ago. Although he doesn't have the power to execute policy changes, Roberts has drawn criticism from South African activists and industry alike.

His unprecedented visit to the retroviruses conference raised hopes and questions about possible new directions in South Africa's official approach to the epidemic. "I'm an existentialist," he said. "Which means, I suppose, that you don't have responsibility unless you take it -- and then when you take it, you have it." His elliptical, if not evasive, responses to proposals of specific treatment plans frustrated some activists and researchers at the conference. Salon sat down with him to find out what, exactly, he sees as his mandate.

You missed the registration deadline for this conference. Why did you decide it was still important to attend?

It's an opportunity to network, which I don't think we've done
particularly well before. For example, if I talk with enough people that know enough about vaccines, we might save ourselves an enormous amount of work as we start to develop a vaccine against HIV subtype C [the most common strain in sub-Saharan Africa]. I also wanted to see what was relevant to Africa and Asia at a major conference. I'm interested in what groups of high-level research scientists are doing about HIV. What messages are there for us?

What did you find?

A small number of presentations that mention Africa, but very little that illustrates a group like this is really focused on the epicenter of the epidemic.

Vaccines are a huge priority right now. Where do you see progress coming from in this area?

It has to be global effort. All relevant people need to come together one way or another and lose protectionism and desire to leverage themselves and just focus on what we need. It's not a question of do we have the budget. It's that if we don't solve it, the ramifications are going to be enormous. In a sense, it's a shame we don't have complete, total global dictatorship for a year where one individual says, "Either you do it or you die."

Do you see this global involvement happening?

On the flight here, I flew next to someone from Shell -- it could have been anybody, from any company. I always ask people the same question, partly because it gives them a level of discomfort: "What are you doing about AIDS? What is your company
doing about AIDS?" He said, "Well it's not Shell's problem." If I had a
company, or was managing director of Shell now, I would be very focused on what I could do. Not only because my marketplace is going to change tremendously, but also because there's a responsibility when a continent is facing what we are. Three or
four months ago, I didn't have the same sense of urgency I have now, so I can understand if Shell doesn't have that urgency. Still, it seems surprising to me that it's not there.

So, something's changed for you recently. Where has your sense of urgency come from?

It's hard to say exactly. One thing may be that there are very few people that I'm close to, or that I like, and one of them died recently of non-Hodgkin's lymphoma [an AIDS-related illness]. He was a fashion designer and worked for Missoni with my wife.

What's the most important insight you've gotten here?

I think for me -- and this is most probably obvious to people who've been in this area for some time -- is to begin to explore use of micronutrients, deparatization [treating for worms and other parasites than can make the immune system more vulnerable
to HIV], vitamin A supplements. Those are things we have to do anyway in South Africa. Other ideas that are important are use of ddI and hydroxyurea [two low-cost anti-HIV drugs] in an African context. Some immunotherapies might work in a South African context, as well. All are fairly new to me as concepts.

What about something like nevirapine or AZT for stopping pregnant women from passing the virus on to their babies? Last year a Ugandan study found that a $4, two-pill regimen
dramatically reduced the levels of transmission. Will you move forward with that?

Often, the easiest answer is for policy advisors to just roll out a [new policy]. So you can say, "We'll roll out nevirapine," and then AIDS activists can congratulate themselves and say, "We pushed the government into this"; researchers can congratulate themselves and say, "Wonderful initiative -- we did all the work." Government can stand up and say, "We're really doing something in AIDS now" -- and at 2 years old, the kiddies are still dying, and everyone's lost hope. That's not saying we shouldn't intervene. Once we know the results [of South African trials of this regimen], we'll go back to the minister for her policy decision, which may
be that we need more clinical trials, or it may be that we'll roll out a new policy.

That almost seems to be in conflict with the urgency of what's happening in terms of infections.

What I want to avoid is self-perpetuating publication of papers. Science can either produce more publications or it can impact on the social reality of people infected. You have to have some solid evidence about what you're doing. The danger of rolling out public health policies based on anecdotal evidence is that they're very difficult to reverse. I think we can be quite loose and make best guesses, but good political decisions are underwritten by good science.

Still, at this conference, some researchers have been surprised by your hesitation to recommend ideas, like the $4, two-pill nevirapine regimen, that might work, have been proven to work in other African countries.

They're entitled to their opinion. We're waiting for the SAINT [South African Intrapartum Nevirapine Trial] study, which will provide important information specific to South Africa. In addition, we're looking at the total picture -- trying to understand reducing transmission in the South African context. I don't dispute that nevirapine lowers transmission, but we have to
deal with the problem from a holistic perspective. Treatment might be important, it might not be. Perhaps it's more important to improve the child's quality of life [such as clean water, food, shelter].

On the last night of the conference, you met with thought-leaders in research, many of whom had extensive experience in using simpler drug regimens, and there was near
unanimity about the feasibility of testing whether a simple combination of ddI and hydroxyurea can help reduce death in South Africa. Is that something you'd like to see implemented?

A whole process will hopefully start out of these meetings. It needs to be discussed whether we should do studies of therapeutic interventions in adults. Therapeutic interventions -- that's new. [South African policy has officially focused on prevention, emphasizing vaccines.]

It's clear that treating the virus can help stop transmission. We know that when women have fewer copies of the virus in their blood, they are less likely to pass it on to their babies. A Ugandan study presented here showed that people with lower viral
load don't pass the disease on to their sex partners. Some people might say that, given the gravity of the epidemic, large-scale treatment trials should be started as soon as possible -- say in the next six months.

Let them [the critics] put it in place in the next six months. AIDS is not only a South African problem. Everyone should be working on it. It's not just what am I going to do when I get back -- it's what is everybody who I talked to here going to do.

Are there things that you saw here that were compelling, that you'd like to act on?

For years I've heard things that were compelling. The problem with transformation is that there's many, many, many things that are compelling. Priorities have to be traded all of the time. It's almost like managing chaos theory. I think we must do
something and do something quite quickly. Whether this is the right strategy -- setting up trials and setting up networks -- I don't know. The political leadership of our country will have to make decisions given all their other priorities. AIDS is one
of our problems. I think it's a very big problem. But in fact, the evidence that's coming out of Africa at the moment is that many, many women are concerned about getting access to clean water, medical care for their kiddies. I don't know how to prioritize. If political principals prioritize what we do differently, I'm
not going to fight them.

Where do you go from here? Are you hoping to have a formal international advisory committee come out of this?

It should. But if I did everything formally, I wouldn't be here. The danger is that I go back home, send in a report, another crisis pops up somewhere else, I focus on that, and then suddenly wake up and find out I'm not registered in Durban [at the World
AIDS Conference, July 2000] either. In South Africa we're passing 120 pieces of legislation a year to turn ourselves from an apartheid-based system into a democracy. That focus on
transformation does mean you can't focus that easily on everything else. It's our reality. We can't shift it.

By Emily Bass

Emily Bass is a senior writer at HIV Plus Magazine in New York.

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