by Piot, Peter
I began contacting pharmaceutical companies for funding the necessary infrastructure for clinical work—$10,000 here, $5000 there. And I found a young energetic doctor, Bob Colebunders, a really good clinician from Antwerp who was willing to go there for us full time, for not much money. I applied for a grant from the European Union, and from the Belgian Medical Corporation, and my old friend Jean-François Ruppol, in Kinshasa, introduced me to the head physician of the Banque Belgo Zairoise. For each of several years I went to see the elderly CEO of this bank, who was known as Le Chevalier (Knight) Bauchau, at the bank’s headquarters in Brussels, where everything was freshly polished ebony and you could actually smell the colonial era. It was part of the Société Générale, where my father’s father worked, long ago; it was also, still, the main bank in Zaire and I became one of their charities. Every year Le Chevalier Bauchau handed me a personal check for 100,000 or 150,000 Belgian francs—a personal check in my name—and he solemnly pledged the bank to support us logistically in Kinshasa.
So this became my capital, and the Institute of Tropical Medicine officially became a partner in Projet SIDA, a phenomenal research project and one of the things I’m most proud of in my life. It laid out all the ABCs of AIDS in Africa, fast and solid, and when, a few years later, the New Scientist did an analysis of the scientific literature on AIDS, papers coming from Zaire were the most often cited scientific publications on AIDS in the world.
It wasn’t until October 1984 that Projet SIDA really began. We had a triumvirate overseeing it: from the NIH, Tony Fauci, the head of NIAID; from the CDC, Jim Curran, the director of the AIDS Division; and from the Institute of Tropical Medicine, me. Jonathan Mann and the whole project became accountable to us. So in a way I was bumped upstairs, although in practice we Belgians could not hope to provide the financial heft that the Americans did. We divided up the labor: the CDC was roughly responsible for the epidemiology; the NIH for the laboratory; the Belgians for the clinical aspects. So Bob Colebunders and I were specifically responsible for describing in detail the clinical spectrum of HIV infection in Central Africa, as it was not known then how exactly AIDS manifests itself in a completely different environment than in the West in terms of nutrition, the interaction with other frequent infections, and genetic makeup. All this should lead to better clinical diagnosis and ultimately treatment. We also often found ourselves caught in the middle of the complex relationship between the two American agencies, whose modus vivendi was not always harmonious. (This was also true of the Armed Forces Institute of Pathology, which joined us later.)
In practice our work overlapped greatly and at the end of the day we all worked very smoothly together. We agreed that we would publish everything together, and that all studies would be designed and executed jointly. And I argued that we couldn’t just use the endoscope, the bronchoscope, and all the other equipment we were bringing in, to do studies. We needed to provide a service to people in the hospital, and we also needed to invest in training Zaireans. Actually this was contrary to NIH and CDC regulations in those days (no longer today) because they could only fund research—clinical medicine was considered development assistance. But I insisted that Bob Colebunders—who was moving to Zaire with his wife, a nurse, even though he knew I only had enough money initially to pay him for six months—be there also as a service provider in the internal medicine ward of Mama Yemo, working with Dr. Kapita. We just didn’t tell anyone else about it for a while.
It was on that trip that I got formal approval from the Zairean authorities to set up all this work and nailed down funding from the Belgian Development Agency. We set up the lab, which Frieda Behets ended up running. She was the Flemish woman living in Kinshasa whom I knew from my Ebola days; incredibly hardworking and determined, you felt she could parachute anywhere and survive in almost any circumstances. She became a superb manager of the project. Then there were Bosenge Ngali and Eugene Nzilambi Nzila, two very young Zairean doctors who could cut through government bureaucracy very nimbly and knew how to connect with people. They were invaluable. Ngali later became the first director of the Zairean National Aids Programme, the first on the continent. Nzila in particular was a lot of fun, in addition to being a clever guy. His last name in Kikongo meant “the wrong path,” which became a running joke, and he was a sapeur, a Zairean dandy, who wore impeccably tailored suits. He and I spent many an evening on the terraces of Matonge, where there was always good music—a genre evocatively named sekous, from the French secousse, “shake.”
Kinshasa was again thrilling but it had an edge to it. I was staying at the Fométro—I always did, I never had any spare cash for hotels—and at night, often in the daytime too, I was constantly stopped at road barriers by police or military trying to shake me down for a bribe. I never gave them any money, but it could become unpleasant, particularly at night if they were drunk. One day I was arrested at Ndjili Airport and put in a room with some secret policemen, who accused me of smuggling diamonds, while my plane for Brussels was boarding. They finally let me go before the plane took off, but after that I put my principles aside. At a next visit to Kinshasa I went to the Grande Chancellerie des Ordres Nationaux, the institution that directed the Order of the Leopard to which I had been named in 1977 by the grace of President Mobutu. Unlike every other institution in Kinshasa, this ran on greased and soundless wheels; everything was in perfect order and spotless, and they immediately found my file. They issued me the card immediately, in the bright green color of the ruling party and signed by Mobutu himself. After that, any time I was stopped or harassed I showed the card, and from then on, I didn’t even have to open my suitcase at the airport; they just saluted and stood aside. But at times I wondered whether I too had been corrupted by the corrupters.
WE BEGAN AN important household contact study. Can you get HIV infection from close, nonsexual contact? What about insect transmission—lice, mosquitoes? We didn’t think it was mosquitoes, especially because we were then seeing hardly any HIV infection in children, who were severely affected by malaria, which is transmitted by mosquitoes. But with AIDS, almost none of the questions yet had answers: everything needed to be checked out. We found no evidence whatsoever of nonsexual household transmission, which was reassuring.
Projet SIDA also pioneered mother-to-child HIV-transmission studies. There were early indications from the United States that a then unknown proportion of infants born to women with AIDS would also develop AIDS, and nearly uniformly die with opportunistic infections. There were so many infected women in Kinshasa, and they had very high fertility rates, so this seemed like an immediate priority. We did the study in the pediatric ward at Mama Yemo Hospital, Pavilion 7, on every hospitalized child and a healthy sibling. Many children had symptoms associated with AIDS, but in the absence of quite advanced laboratory tests, diagnosis of HIV infection in infants and children can be difficult, even today. Then we began just collecting specimens, banking them, in anticipation of the day HIV tests became available; we knew several companies were working on them. (This work grew in importance under the aegis of Jon’s successor, Robin Ryder.)
Clinically, the biggest problem was diarrhea: intractable, debilitating, inhuman, and humiliating. People stank, they were too weak to stand up, lying in this evil waste, and it went on for months: I had seen cholera but that is far more acute and of short duration. AIDS patients died alone. People—friends, family—were afraid of them. People knew very quickly there was an epidemic going on, and there was stigma, rejection. This affected me, as I think it affects every doctor who works with AIDS patients. It wasn’t just about the enormous scientific curiosity and excitement, it was about people, our patients and others.
Jonathan began organizing surveillance for AIDS in Kinshasa to see whether the epidemic was expanding. We began working with blood banks, struggling to secure the blood supply. As a first step we looked at who the blood donors were, keeping their sera, because there was no test yet. There was a small blood bank at Mama Yemo Hospital
, with 30 to 40 donations a day, but they were either professional donors, paid for the service, or family members. The blood bank at many African hospitals is just a poor man at the door.
Then mid-1985 we got a first batch of the prototype enzyme-linked immunosorbent assay (ELISA) test. I can’t remember how many it was, but no more than a few hundred tests. With the kind of prevalence we were seeing, just by painstakingly counting T-cells and CD4 cells, where could we start? A test didn’t give us any hope of curing anybody. The most useful, direct application seemed to be to screen blood transfusions: there you knew you would be certain of preventing at least one new case of infection. So we began with that.
We also began to follow up on people we had considered to be “healthy” controls back in 1983, but who in the initial evaluation by the French research team were found to be positive for the virus. In some cases it took a long time before they fell sick, but they all did, and they all died. So, the results of their HIV antibody tests were not false positive, but an indication of dormant HIV infection.
MAMA YEMO HOSPITAL had become the referral center for all the AIDS patients in Kinshasa. I was spending a lot of time there, three or four trips a year. Jonathan Mann and I worked smoothly together, but we were very different men. His world in Kinshasa consisted of the base he set up at Mama Yemo Hospital, the US embassy, the American Club, his kids’ school, and the Ministry of Health and home. We had our arguments now and then. For example, in the early days he prohibited us from telling people that we were taking their blood to test it for AIDS; we were supposed to say it was for a study on malaria. I argued that we should tell them. Actually that’s a requirement of any ethical board: you should tell people what you’re doing with their body fluids. But it was Jonathan who negotiated with the Zairean Ministries, and he argued that they wouldn’t permit it.
It may have been true. Jonathan was an astute diplomat, and he made this groundbreaking enterprise acceptable to the Zairean authorities, who were then in denial about AIDS, as was about every other government in Africa, and very ready to accuse foreigners of racism. And he held it together, too, with the warring factions of the NIH and CDC.
There was one other argument between us. I knew there would be trouble because he took off his glasses, and began fiddling with them with the little toolset that he had; this was something that he always did when he was tense. Then he hemmed and hawed and said, “I’m very concerned about you going out so much.” Jonathan could be judgmental, and it seemed like he was insinuating that just having a beer, or going out dancing, was not sound conduct. I said, “I highly recommend that you do too, and see real people: they’re having fun, and most of the time just talking and dancing, but it’s important that you see that.” Moreover, I thought it was good professional conduct to socialize with our Zairean colleagues. I felt it meant that socially, politically, and in terms of the epidemic’s vectors and trajectory, I could understand a little better what was going on in Kinshasa.
CHAPTER 12
Yambuku One More Time
IN JUNE 1985 the first International AIDS Conference was staged in Atlanta, Georgia. By this time 17,000 cases of AIDS had been reported, but more than 80 percent of them were in the United States. I attended, along with Bila Kapita, Wobin Odio (a Zairean professor of internal medicine), and Dr. Pangu, who had become the principal adviser to the Zairean minister of health. They were the only Africans present; in fact, practically the only black people. I was their interpreter, and because there was already the feeling that AIDS had originated in Africa, there was kind of a buzz around them. But they clearly felt insulted and shocked by the allusions to our work, and to the insinuations that were being made—that African patients were actually closet homosexuals, that they were having sex with monkeys. Dr. Kapita, in particular, was a man of such respect, such rectitude and dignity, that he was really very offended and angry.
There was major resistance at this conference to accepting the fact that HIV can be transmitted from women to men. People—and many were scientists—conceded that maybe it can be transmitted from men to women, but in that case it must be anal intercourse. I remember a discussion in front of our poster with some people from the New York Health Department who insisted that heterosexual transmission was absolutely not possible.
There was also a big debate about testing. I remember the stickers proclaiming “NO TEST IS BEST,” and noisy demonstrations. The logic was that a positive test only meant discrimination; there was no upside, because there was no treatment. And since everyone was supposed to use condoms all the time, there wasn’t the benefit of protecting another person’s health. I was puzzled. I saw their point, but also how useful it would be to know who is infected with HIV to protect themselves and others. That was the first time I encountered AIDS activism. It didn’t yet exist in Europe, much less in Africa.
On a more positive note, I met Jean William “Bill” Pape, the Haitian infectious disease specialist who had begun looking at an epidemic of people dying of diarrhea in 1981, before AIDS was even identified. His group, GHESKIO, in the Cité Soleil, in Haiti’s capital Port au Prince, was doing really pioneering work, and although they had funding from Cornell University, it was always a Haitian-driven project. His team is still at the forefront of both clinical care and research on AIDS in Haiti. We Zaireans bonded with him because we were from the developing world too; I wasn’t really a Zairean, or from a poor country, but in this context I felt that I was, because it seemed as though we were alone in realizing that AIDS could be an even greater threat to developing countries than it was for the West.
IN OCTOBER 1985 I participated in a first meeting on AIDS in Africa itself, in Bangui, the capital of the Central African Republic. It was a small gathering of Africans, Americans from the CDC, French scientists, and myself. We all crammed into a meeting room of the Pasteur Institute of Bangui. This was at a time when the Africa office of WHO desperately did not want to get involved in anything to do with AIDS. Because, faced with a clear unfolding catastrophe for public health, WHO still had been inactive, except for its offices in Europe and the Americas, since originally it saw AIDS as a problem of wealthy countries only. And WHO Director Halfdan Mahler had recently told reporters in Zambia that “AIDS is not spreading like a bush fire in Africa . . . it is malaria, and other tropical diseases, that are killing millions of children every day.” (To be fair to Mahler, he later became a strong supporter of AIDS work, and even told the United Nations General Assembly in 1987 that AIDS was a major threat to the health of the world.)
It was only with great difficulty that Dr. Fakhry Assad, the director of WHO’s Division of Infectious Disease, managed to organize the meeting at the Institut Pasteur in Bangui, together with Jonathan Mann. The main outcome was a practical case-definition of AIDS, so that everyone in Africa could make a diagnosis: this would help us get a better idea about the distribution of it. And also, quite simply, it was the first time Africans were talking to Africans about AIDS. “I’m from Dar es Salaam, you’re from Kinshasa, our countries are neighbors, are you seeing the same thing I’m seeing?”
Our discussions were an extraordinary mix of comparing notes, discovering similarities and differences, and formulating hypotheses about where this all started—only interrupted now and then by a staccato of heavy rain and mangoes hitting the metal roof. Oddly enough, because of the English/French schism that runs through Africa, once again I often acted as interpreter. It was truly a historic meeting, not only because it was the first of its kind in Africa, but also because in quite a few countries it triggered AIDS control activities by participants at the meeting. A new community was born: the community of African AIDS researchers. I was a proud member of it.
BY THIS TIME, 85 countries had reported cases of AIDS to WHO—even China had a case, which meant the epidemic was present in every region of the world. WHO was under pressure to take much more vigorous action. Halfdan Mahler approached Jonathan Mann, and he and Jonathan agreed to set up a new program
at the WHO Headquarters in Switzerland. Jonathan left Kinshasa for Geneva in the spring of 1986.
His departure was a blow to Projet SIDA, because Jonathan was someone you didn’t replace easily. In just 18 months he had constructed an incredible organization in Kinshasa, a project that was already publishing groundbreaking work and was poised to do studies of crucial importance for the future worldwide fight against HIV. But I could see his logic. He was a visionary, someone who liked to create things, and he was keen to play a global role.
There was certainly a need for it. AIDS was becoming an angry issue; there were laws for mandatory testing of immigrants, a lot of discrimination in the workplace. The president of the German Federal Court of Justice had just said it might be necessary to tattoo or quarantine HIV-positive individuals, and in some countries—the Soviet Union, Cuba—anyone found positive was confined to what was essentially jail and often punished for being a homosexual.
Jonathan Mann was capable of working to turn that around, in terms of public awareness and raising the intelligence level of governments.
In April, Mann and Halfdan Mahler scheduled a meeting of donor countries in Geneva, to raise enough money to get the new Control Program on AIDS off the ground. I was present: despite my total lack of experience regarding international diplomacy, I was representing Belgium, at the request of the Belgian Development Ministry, as nobody there knew anything about AIDS. Jonathan was very nervous about how things would go, so he and I had cooked up a plan: I would try to be the country representative who would speak first, to kick things off and set the tone of the meeting.