No Time to Lose: A Life in Pursuit of Deadly Viruses (18 page)

I was traveling to Nairobi, to Kinshasa, and to the United States. And then there was my family.

I also invested much time in training people—increasingly in Africa itself. Thus, with Ibrahim Ndoye, Souleymane Mboup, and Awa Coll-Seck—all stars of AIDS, public health, and medical research—I organized an annual course on STD and AIDS control in Dakar, Senegal. Many alumni of that course became top AIDS leaders, such as the elegant Ethiopian dermatologist Meskerem Grunitzky-Bekele, and the Senegalese activist As Sy, who became regional directors for Africa in UNAIDS.

I was basically running around like crazy. Like my grandmother once said, citing a mordant Flemish proverb, “Peter, your ass can’t sit still.” I was almost addicted to this frantic lifestyle, and felt with such devastating health problems there was no time to lose. And there was something else I badly wanted—needed—to do.

I often urged Jonathan Mann to authorize a trip back to Yambuku, to the Catholic mission where the Ebola epidemic had broken out 10 years before. He always refused: he felt, I think, that if we found high levels of HIV in Equateur province, where President Mobutu was born, it would be politically explosive, and he was also frankly frightened of security conditions outside the capital. But now Mann was gone, and Henri “Skip” Francis, Tom Quinn, Joe McCormick, and I decided to pull out the sera that had been carefully banked from the Ebola epidemic: they were still correctly coded and neatly preserved in freezers at the NIH, the CDC, and in Antwerp.

Out of 659 sera, we found 5 villagers who in that remote and isolated region had been HIV positive in 1976, 10 years before: a prevalence of 0.8 percent. We had their names and location. If we could find those people—at least discover whether they were alive or dead—then maybe, we thought, we could learn a lot about how this disease worked over time within the individual. And by conducting another population-based survey, we would have a unique picture of the speed with which HIV diffused within a rural population.

So in August 1986, at the age of thirty-seven, I went back to Yambuku. Skip Francis came along too, as well as Marie Laga, laboratory technician “Kash” Kashamuka, and Eugene Nzilambi Nzila. (Later Dr. Kevin De Cock, a Belgian epidemiologist from the CDC, whom I had met five years earlier in Nairobi, performed additional studies in the region.) It was very moving to return to a place that had been so formative, and to do it in such good company. Skip was great, observant, and humorous, eager to see more of Zaire than just Kinshasa; Nzila, the dandy from the nation’s capital, and Kash, from the eastern Kivu, were off-balance and full of self-deprecating humor in a region they had never been to. Both looked to me for guidance: they might be Zaireans, but I was the one who knew my way around the place.

The fact was, everything in Yambuku was exactly the same. If anything, the road was worse, and the river port of Bumba had disintegrated a little more. Father Carlos had created a small health center and school, but Nogeira was closed, I remember—entropy settling in. At the health center and hospital, they had seen only a sporadic patient with AIDS, and I didn’t think they would have missed an epidemic of AIDS like the one going on in Kinshasa. Some people recognized me, and I noticed that when they spoke about the recent past they would say “before Ebola,” “after Ebola,” so that the epidemic was present in many things: “My son was born before the epidemic.” In a way I suppose we shared that, because that was how I thought about my life, too. And it was how my parents and grandparents talked: something happened before or after the war of 1940–1945.

At the same time, I found myself better appreciating the beauty of the place: it could so easily have been a paradise. But there had been fighting, marauding bands of soldiers, and life was not good, you could see that.

At the mission hospital in Yambuku, there were now boxes of disposable syringes and a full-time doctor: the medical operation was clearly in much better shape. The atmosphere was strained, however. There were two Fathers living there; one, about sixty, went about in black leather
lederhosen
—it was quite incredible, in that heat—with a sleeveless T-shirt, and plastic boots in case of snakes. He had a long white beard, so above the neck he looked like a missionary and below like an eccentric character. I once heard him thundering at some of the villagers: a domineering tone that the sisters appeared to dislike almost as much as I did. It was a very curious setup: four Flemish women and two Flemish men living a few feet from each other, alone in Africa, for decades, and often bristling with dislike. But women were not allowed to preside; and they must confess to these men.

We identified all five of the villagers who had tested positive for HIV 10 years before. Three had died of what could have been AIDS, but two were surviving without any medical care at all and no discernible symptoms: a fifty-nine-year-old woman and a fifty-seven-year-old man. The man had a low CD4 count, so we thought it was likely that his immune system was beginning to fail. We isolated the virus from them and clearly it was the same as the virus in Kinshasa. Until then we had not known you could live so long without showing symptoms of AIDS: the disease had been discovered only five years before, so there was no way of knowing it. But because we had banked and coded our Ebola sera so carefully, we were able to do this, what amounted to a kind of medical archeology.

We found six current hospital patients who had AIDS, in the Yambuku mission and in the small Lisala and Bumba hospitals. They had nonspecific symptoms and were dying. But among the general, healthy population, we found the exact same prevalence of HIV infection in the blood samples that we took as we had back in 1976: 0.8 percent. In other words, the population of Yambuku was less affected than the Swiss canton of Geneva, which was showing 1 percent prevalence at the time among pregnant women. This told us that something like HIV can remain endemic at a very low level in a population, if conditions are not there for intense transmission.

Another interesting finding was that just about everybody who was HIV positive had traveled outside the region, or had a spouse or sexual contact who had. So typically, somebody was infected by going to a city, and maybe they then infected one or two people in a lifetime. But that was it, because in this very traditional region the number of sexual partners was, as far as we could gather, much lower than in Kinshasa or, as a matter of fact, than in Europe or the States. There was also less sexually transmitted disease of all kinds. The large number of injections for medical reasons or to vaccinate also did not seem to have led to the spread of HIV. In terms of the origin of AIDS, this meant it might have been around for decades or perhaps even a century, because if there is no amplification of risk there can be a very slow rate of transmission, like a barely flickering candle. Applying the Anderson and May formula from chapter 5, the basic reproductive rate
R
° was around 1 for at least a decade.

We published our work in the
New England Journal of Medicine
in 1988; Nzila, I’m proud to say, was the first author. Today we know HIV hasn’t been around for centuries; based on genetic diversity analysis, we know it could have originated in the 1930s or perhaps even 1900s, probably in west Central Africa north of Congo, but it can’t be much older. But since that time I have felt it is wrong to speak about AIDS in Africa unless I also make it clear that there are many Africas, with different AIDS epidemics, with very different social factors at work.

It was also quite poignant to leave Yambuku, to sip a last glass of vermouth with Sisters Marcella and Geno and wake up one last time to the sound of the sisters’ sweet morning hymns drowning out the frogs and birdsong. I told myself I would go back again one day, and vowed to keep in touch with Father Carlos. I’m glad to report that he has satellite-connected e-mail now, and a website, and that the Belgian King Baudouin Foundation (of which I was chair of the board) recently awarded his parish 400,000 euros for water supply and high school education. He has set up a small hydroelectric power station, to provide the town with a little electricity, and I still nourish a plan to return for a visit, just to see how things are going, how I can help, and to share a beer.

CHAPTER 13

The Unfolding of an Epidemic

A
FTER I RETURNED
to Antwerp, I moved my family of three to Kenya for six months. I wanted to invest more in the project there and start a few studies: I wanted to do something myself, rather than fly in and out and have other people doing it. Also, I felt I would have better ideas, a better feeling for the sociology of the epidemic, if I really lived the personal, day-to-day experience of life in Africa, not via whistle-stops and secondhand knowledge from books or data. But I didn’t want to spend even less time with the children, and Greta and I both felt the experience of living abroad would enrich the kids’ lives. It seemed like if we ever wanted to do it, we should do it soon, because any later and it would be too disruptive to their education.

We moved in December 1986. In addition to working on the research project, I taught at the University of Nairobi. We put the children in the Dutch primary school: their schoolbooks were exactly the same as the ones they had had in Antwerp, which was comforting. The Kibera slum was just down the hill from our house, and my son Bram would disappear there for hours with a bunch of other kids: he was constantly playing in the sewer system, and he would come home in unspeakable filth with some new animal in his pocket—a chameleon or a snake or some insect.

While we were in Kenya, an article was published in the
Guardian
, a British newspaper; it said there was plenty of AIDS in Nairobi, and that prostitutes, in particular, were heavily infected. Frank Plummer, our Canadian project director, and I had asked the reporter not to mention our names, because we were worried about the government’s reaction: Kenya relies heavily on the tourist trade, and was concerned that publicity around AIDS would keep tourists away. But the Ministry of Health didn’t need to read our names in the article to put two and two together. We were summoned to the offices of the permanent secretary of the Ministry of Health, where members of the Home Ministry were also present, and after a short meeting we were accused of spreading false rumors about Kenya, and told that we may be expelled. Frank and I had certainly not expected such a violent reaction, and in our naïvete did not see how facts can be subversive. When comparing notes after the meeting we became convinced our phones had been tapped, though we never had proof of that. After a full day of nerve-wracking waiting in an anteroom at the Ministry, and drinking plenty of good Kenyan tea we were told the verdict: we could stay and continue our research, but should refrain from any interaction with the media. We were relieved, and made some half promise. But we had learned our lesson and also realized we needed to communicate much better with the authorities, who were not that well informed about the results of research going on in their own country, as unfortunately can be the case in Africa. This episode also taught me once again that AIDS is imminently political—as Jonathan Mann had told me numerous times, but I had then often thought he exaggerated.

We agreed with the Ministry that we would share our results, and show what we were doing. So I invited Dr. Wilfrid Koinange, the director of Medical Services, to visit our clinic for sex workers in Pumwani, as he had said there was “no prostitution in Kenya.” A few weeks later Dr. Koinange did visit us, and although he made no comment, I think he saw the value of the work that we were doing (and also that there is indeed prostitution in Kenya). In any case, we had less trouble with the authorities after that, and Kenya now has a well-functioning national AIDS control program.

We returned to Europe in the late spring of 1987, smuggling in one perfect Jackson chameleon that Bram could not bear to part with. (I carried it through customs under my hat.) On my return I had to spend too much time with turf issues around the allocation of AIDS funding to various universities in Belgium, and hated it. Worst of all, my friend Willy was very ill. He had developed AIDS before I went to Nairobi, and I had hospitalized him in Henri Taelman’s ward before I left. But now his situation was far worse, and his brain was affected. Willy was in his early thirties. He was a fairly cynical person, but he didn’t want to die. As he grew sicker we talked about death, about the meaning of life, and of this illness. The hopelessness of AIDS in those days is difficult to express. There were no real treatments, nothing major I could do for him. But I felt then that I was a real physician, not only a clinician who treats an infection: it reminded me strongly that medicine is as much about caring as about treating.

As a psychologist or a counselor I had no more qualifications than someone you’d meet at the barber. Yet I accompanied many AIDS patients. I say “accompanied” instead of “treated” because that’s what it felt like: I accompanied them down their road. I stopped seeing patients in 1993 after I moved to Geneva, but of those I saw until then, every single one is dead. Almost all were people my age or a little older; some of them were friends of people I knew; and it really consumed me. I had studied medicine because I wanted to fix people’s problems, and this felt like the complete opposite.

I was frustrated by my inability to have a meaningful effect and not always sure how to cope with the intimate information that patients were sharing with me. The things people tell a doctor when they are rejected and dying bite very deep. In some cases, this may have been the most intimate relationship that these people ever had with somebody. And nobody knew. These were not things I shared with others, even my closest friends.

I saw partners, I saw wives, I saw women who learned that their husbands were gay and—oh, by the way—also had HIV. Sometimes I had to tell people that they, themselves, were also HIV positive. After struggling to find the right words, I realized it was best to tell them straight out: “I’ve got bad news.” You can’t break that statement down or make it incremental. It’s already a shock. Then I delivered the information: “Your test is positive.” I could practically hear a big bang go off in their head and knew they couldn’t hear me anymore. In the beginning, I tried to say far more, but then I realized that there was no point. I scheduled another appointment, so that we could talk it through later. Preparing for such a conversation would nearly always keep me awake the night before, as I could only think of the death sentence I had to communicate, and the devastation I was about to announce. Some were angry at me, some cried, a few were relieved, most were speechless. This was far more difficult and emotional than writing a grant proposal, having a manuscript rejected, or dealing with interagency politics.

Because of our good collaboration with Nathan Clumeck’s group in Brussels, we also started to connect patients seen in the two centers, which at this point saw the majority of people with HIV in Belgium. This is how we put together a cluster of women with HIV, who were mostly connected with each other through sex with the same man, who had kept a diary of his very active sex life. We interviewed and tested most of his partners, and as much as possible their partners. This was not only a very delicate undertaking, but sometimes also a drama. We found that 11, or 56 percent, of his 19 female partners had become infected with HIV, and that one in eight regular male partners of these women had subsequently become infected with HIV. Two women had slept only once with this HIV-positive engineer from Burundi, who died before we had unravelled this deadly cluster of sexual encounters. None of the women considered themselves at risk for HIV. It took a few years to contact all the individuals and put the puzzle in order. In the late eighties there were still skeptics about heterosexual transmission of HIV, particularly from women to men and outside sub-Saharan Africa. In 1989 we published what is still the largest documented cluster of heterosexuals with HIV in the
New England Journal of Medicine
with Nathan as the first author.

In nearly all ways the situation for AIDS patients was even more hopeless in Africa than in Belgium, because even palliative care, never mind pain management and intensive care, were rarely available to AIDS patients.

Then came a glimmer of hope. At the end of 1986 a clinical study showed that azido-thymidine (AZT)—developed in the 1960s as an anticancer medication but never licensed—slowed the progress of AIDS. Six months into the clinical trial 19 patients receiving a placebo had died, but only 1 person in the group receiving AZT had done so. In March 1987 AZT received approval from the US Food and Drug Administration, becoming the first-ever medication to provide proven treatment for AIDS.

An electroshock went through the still-small world of AIDS doctors. While ramping up production, Burroughs Wellcome began to distribute small quantities of the drug. I had worked with the Burroughs Wellcome team in Belgium doing tests of acyclovir, for herpes, so I knew exactly whom to contact. Thus simple networking ensured that our Belgian patients began receiving treatment at the same time as patients in New York and San Francisco, before the drug even came on the market.

The cost of treatment was $7000 to $10,000 per patient per year. In Belgium this never became the heated political issue that it did in the United States, because patients didn’t actually have to pay such sums: they were picked up by the social insurance system. But I was very aware of it, and of the implication that our patients in Africa would simply never be able to afford to be treated.

Still, in the beginning we celebrated. We were relieved and optimistic. And our patients improved; they put on weight, got up and walked, and some even ran and went back to work. But after a while it became clear that this improvement was only temporary. AZT had serious hematological side effects, and worse, the virus mutated so fast that viral strains became resistant to the drug. We were back to square one for saving lives.

IN GENEVA, MEANWHILE,
Mann was fighting bureaucracies maybe more even than AIDS. He put AIDS on the public health agenda, and he put the public health agenda on the stage. He had fantastic political skills and a real gift for explaining. He mobilized money and made sure that basically every developing country had a national AIDS program, had some funding, and had started awareness-raising about AIDS and how to avoid it. There was enormous resistance from governments on all continents due to a combination of denial of risky sexual activities in their societies, the perception that this was a Western disease, and the concern that too much attention for AIDS would undermine their struggle with a plethora of other serious health problems. And then there are those whose priority is not their people’s well-being, but accumulating personal power and wealth.

I became the chair of the Steering Committee on Epidemiology and Surveillance of WHO’s Global Programme on AIDS, where I was glad to rejoin several epidemiologists for whom I had great affection as well as respect, such as Jean-Baptiste Brunet from France, John Kaldor from Australia, and Roy Anderson from Great Britain, besides the other capable members of the group. We met regularly in Geneva, and advised on the epidemiological work of the AIDS program. We were uncertain of WHO’s methodology to estimate numbers of people with HIV and with AIDS in the world—a difficult task under any circumstance, but even more so in the early days of the epidemic when few individual countries had reliable data. They were initially using what is called a Delphi survey—when you have no data but ask experts to give their best guess, basically, and then you take an average—and later mathematical models that predicted peaks of the epidemic that some populations already had surpassed.

Later it turned out that the numbers from WHO were, in fact, grossly underestimated for Africa and Eastern Europe, and overestimated for Western Europe and Asia. But my point was not so much that they were inaccurate—few of us could have claimed to do better with the data at hand—but that we should not have claimed to be able to provide solid estimates at all. (This changed enormously in the following decade, and by the way, UNAIDS’ data are, in my humble opinion, the best and most solid data on any health problem in the world.)

I persuaded the Belgian Development Ministry to start another project in Burundi: a small version of Projet SIDA that did some baseline research, epidemiological surveys and training, and started prevention and care programs. And Kevin De Cock, my Belgian friend in CDC, began a research program in Côte d’Ivoire: Projet RetroCI. We agreed to work together, and Peter Ghys from my group in Antwerp worked there with Kevin full time.

The Ivoirian capital Abidjan was particularly interesting in that it showed evidence of HIV-1 (the same type of the virus that was in the United States, Kinshasa, and Nairobi), but also of HIV-2, a second type that had been discovered in Senegal by Max Essex, from Harvard, and Souleymane Mboup, a Senegalese professor of microbiology and one of Africa’s leading scientists. It became clear that HIV-2 could cause the same AIDS symptoms that HIV-1 did, but it appeared to be less virulent and was spreading less rapidly. Nonetheless, by 1990 AIDS became the leading cause of death in Abidjan, and HIV-1 the predominant HIV type. (Projet RetroCI later played a major role in the introduction of antiretroviral therapy in Africa, besides delivering excellent science, training, and HIV prevention.) By this time, you could actually watch the epidemic spreading: countries falling ill, hospitals overcrowded with AIDS patients, companies losing highly trained staff. In some parts of Uganda and Tanzania, there were already so many AIDS orphans that their grandmothers simply couldn’t cope.

THE THIRD INTERNATIONAL
AIDS Conference was held in Washington in 1987, and I was asked to speak at the opening. This was a very big deal for me, and I was planning to announce to the world unequivocally that there is heterosexual transmission of HIV, indeed a lot of it. Robert Gallo was speaking, and Vice-President George H. W. Bush was going to speak next. I was waiting my turn, sitting in the front row of the conference room at the Washington Hilton when—just like in one of those nightmares—I realized that I had left my speech in my hotel room upstairs. I raced out. When I got back Bush’s security people didn’t want to let me in. Finally I made it, just in time to watch as people hissed at Bush and turned their backs on him, in protest against President Reagan’s plans for more extensive HIV testing programs. I never thought of myself as someone with undue respect for authority but I believe we should always let people speak, even if we disagree. We can protest before or after. I did agree to a large extent with the protesters’ points, though: the US government could do much better on AIDS, from funding research and prevention programs, to countering AIDS-related discrimination. This was the year that ActUp was founded in New York by gay AIDS activists. Together with other activist groups they would become a very vocal and effective force to accelerate research and access to AIDS treatment, and were soon an integral part of the growing AIDS “movement.” Washington was the first of a long series of protests at AIDS conferences, and I myself sometimes became the object of them. AIDS activism in the eighties and nineties could be loud and out of control. Nowadays we’ve sanitized these protests: conferences arrange a short window so the activists can go ahead and make their points. In Washington in 1987, police with long yellow rubber gloves arrested AIDS activists outside the Hilton on Connecticut Avenue. We have come a long way.