No Time to Lose: A Life in Pursuit of Deadly Viruses (15 page)

We needed to clarify that, and look at risk factors in a very systematic, in-depth way. Also, we could already see there was probably at least some mother-to-child transmission, and this was completely new to us. A third point, perhaps more controversial, was the span of the problem we’d seen, which suggested that the disease could have been around in Central Africa for longer than in the West, even though it didn’t look that way at first. Fourth, we needed to understand the course of the disease in Africa. Was it the same as in the West? For example, it already seemed from our experience with AIDS in Belgium that Africans had less
Pneumocystis carinii
pneumonia and Kaposi’s sarcoma, and more cryptococcal meningitis, than their European counterparts, but our sample was relatively small, and we did not know whether these findings were representative of what was going on in Africa.

We planned to establish a lab at Mama Yemo Hospital, with facilities for hematology, microbiology, and immunology tests including analysis of lymphocytes. We would do a full immunologic profile of patients who looked like they had AIDS and compare them with healthy controls, surgical patients, and people with TB, and various parasitic illnesses, so we could develop a solid case definition of AIDS in Africa. We would study potential risk factors—sexual activity, blood transfusions, needle exposure—basically, an epidemiological study just like we’d done with Ebola. And we would do a prospective study with family contacts and sexual contacts of the patients, to look at their clinical and immunologic status over time, and whether HIV could spread through casual contact in households in an environment where people live very close to each other in overcrowded houses and are constantly exposed to bites of all kinds of insects. Finally, we planned a major study of AIDS in children.

The proposal sailed through various committees and everything looked fine until suddenly, toward the end of January 1984, there was silence from the side of the NIH. The CDC had decided to start their own program in Kinshasa and had recruited the state epidemiologist of New Mexico—a doctor named Jonathan Mann—to do the job.

The first I heard about this was a phone call one afternoon in early March from Jonathan Mann. He said he was on his way to Kinshasa to set up a CDC project on AIDS. I wanted to say, “WHAT?” but didn’t. But he asked if he could stop by my office in Antwerp on his way there, and of course I agreed. So I picked him up at airport in Brussels, and although I was very tense initially, he turned out to be a very charming man, rather diffident, physically something between Albert Einstein and Groucho Marx, with an intense, interested manner, almost like a psychoanalyst. He told me right away that he’d never been to Africa and he was clearly nervous about it. His French was very good; he was then married to a Frenchwoman. So we hit it off reasonably well, and we agreed that we would have no problem working together.

I joined him in Kinshasa at the end of March. I introduced him to various people, and I gave him a copy of the proposal that I had written up with the help of Tom Quinn and Joe McCormick. Going around the hospitals, it was clear there were new cases of AIDS: Bila Kapita, at Mama Yemo told us he suspected about another 100 since we had left less than four months before, with two new patients with cryptococcal meningitis turning up every week.

In April I received news from the NIH that my grant was not accepted. Later I found out that Jonathan blocked it for reasons that I can understand now since he was going to head up what would rapidly become the largest biomedical research project in Africa. Happily it took several years before I learned this, and by then I had developed enormous respect for him. He was a very complex personality—as an individual, rather insular and a control freak—but he had an incredible mind in terms of linking things that had not been linked before, like human rights and health. He had studied at the famous Sciences Po school in Paris, and combined political analysis with the public health aspects of AIDS; he strove extremely hard to move the field toward justice for the downtrodden in a way that was completely unique. He became an extremely skilled diplomat with a long-term vision, and on the other hand he had no tolerance for all the bureaucratic nonsense and inaction that is so characteristic of international agencies.

But at the time, the salient information was that the NIH had decided to drop me completely. They would partner directly with the CDC, and they selected Skip Francis, an African American immunologist who worked for Tom Quinn, to go to Zaire and work with Jonathan. So now I had no money for the work that I so badly wanted to do. However, Jonathan agreed that the Institute of Tropical Medicine could become a partner in Projet SIDA (SIDA is the French acronym for AIDS). We would be in charge of clinical studies, an area that he wasn’t much interested in. The proviso was that I had to come up with the money to fund our work.

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.