by Piot, Peter
Henri was a Francophone from Brussels, not much older than I, but he had vast clinical experience in Africa, and his work was his life: he lived and breathed for clinical medicine to a degree that I could only marvel at. It was almost difficult to talk to him about anything else, though he had a great sense of humor. He was meticulous man, with great integrity and a powerful dedication to his patients. (He died far too young in Rwanda in 1999, where he had returned after the genocide to help rebuild the university hospital in Kigali.) He often called me in to talk over a patient’s case—take a look at the samples and the context, puzzle it out. Now it was time for me to call him in to help.
Henri and I began going through the hospital files, trying to check whether there was anything new—any kind of syndrome we missed earlier.
This was where the Greek fisherman’s case suddenly became obvious: an inexplicable death, his body eaten away by an unusual infection, obvious signs of a powerfully degraded immune system.
Slowly, one after another, other patients started walking in to the institute, nearly all of them with an African connection. They had chronic diarrhea, with startling weight loss, and infections that were unusual, highly aggressive, and suggestive of an extraordinary and mysterious immune collapse: cryptococcal meningitis, for example, or central-nervous-system toxoplasmosis, and dramatic herpes zoster infections. Our team was accustomed to all kinds of tropical complications—from malaria, sleeping sickness, sickle-cell anemia—and we knew that these were not the symptoms of any ordinary tropical disease. By the end of 1982 we had perhaps a dozen of these patients, and in those days that was a lot, because every single case of this so-called Gay-Related Immune Deficiency was worthy of publication in a medical journal and was reported to WHO.
Although there were pieces of the puzzle that seemed to fit, what we were seeing was a spectrum of opportunistic infections that were quite different from the Pneumocystis carinii pneumonia and Kaposi’s sarcoma being described among gay men, and from 1982 also in people with hemophilia and some Haitian heterosexuals. None of our patients said they had had homosexual contact. And we also had a few women; in fact, women were almost half our caseload.
They were African women, the wives of wealthy men or high-ranking government or military officials. They came from Central Africa—mostly Zaire, but in a couple of cases Rwanda and Burundi—and they were desperate, very thin, very worried, very sick, with a peculiar, glassy look in their eyes that seemed familiar. I realized only much later that it was the same look that I had seen in the eyes of Ebola patients. Their medical situation deteriorated with spectacular speed. We had no idea how to treat them.
The pace of arrivals picked up. Henri and I began phoning each other—“We admitted another one”—another well-off African, or occasionally Belgian, from Central Africa, basically on the verge of death, hoping to receive better medical care with us than they would at home. Henri and I talked with them, over and over, trying to work out the epidemiological picture, because we thought there had to be a gay connection. It wasn’t easy, because most African cultures are pretty homophobic and even the simple suggestion could be perceived as a mortal insult.
I remember one Zairean high-ranking military official who arrived in 1982: about fifty years old, formerly obese, his clothes simply hanging off his body. I recognized the cockiness, the brutality, the sense of entitlement and power of a real Zairean boss-man, and I knew I had to have a conversation with him that wasn’t going to be easy. Having spent quite a lot more time than I ever really wanted to with those helicopter pilots in Yambuku, I had a decent grasp on how to talk to a Zairean military official about sex. I just didn’t know how to ask about gay sex.
“So,” I began, “a man like yourself could be a real sportif”—a sexual athlete, the innuendo was clear.
Of course he was; Commander X was very proud of his sexual prowess and the many, many notches in his belt. He laughed with barely a trace of embarrassment and said, “Naturally I’m a real man. A real man needs women, many women.”
“Wow, you’re a real man,” I said. “Yeah, and maybe, you know, you’re a great athlete, so maybe, in between women, also a man from time to time?”
“What!” bellowed the general. “Never! How can you even think that? How filthy! How deranged!”—and his voice rang with sincerity and spontaneity.
Again and again I had this conversation with African male patients. Sometimes they were totally upfront about their large number of female partners; sometimes they were a little embarrassed, as if they anticipated a white person’s judgmental attitude to something that might be perceived as African animality. (I never looked at it that way as I knew European men and women with as many partners, but they couldn’t know that.) Sometimes they simply led a fairly monogamous life. But although some admitted to having sex with dozens or even hundreds of women, they were adamant: every one of them affirmed loud and clear that they did not have sex with men. This was impossible to verify, but I tried to detect whether they had ever been on the receiving end of anal sex by looking for traces of rectal infections like herpes. There just weren’t any.
I wasn’t completely naïve about this. I had a friend, Willy, who was gay, and who had worked in Abidjan, Côte d’Ivoire, in the early 1980s for a management consulting firm in West Africa. He had sex with plenty of local men. Practically every time he was back in Antwerp he came to me with some florid new genital infection that he’d picked up. I asked him if he was paying for all this sex, and he said no—he claimed that his sex partners were African men, and they were having sex with another man out of choice rather than financial gain. So I did know that there was this kind of underground gay scene in some African cities, at least in West Africa. But my patients truly seemed completely unrelated to it. It was a mystery.
Meanwhile Nathan Clumeck, a young ambitious physician from St. Pierre Hospital in Brussels, who spent some time in San Francisco, was also seeing patients from Central Africa with the same mystery syndrome. We had several dozen cases between us. In May, a French team of researchers headed by Luc Montagnier reported that they had isolated a new retrovirus that was related to the syndrome. By this time about 600 cases were reported in the United States—in homosexual men, Haitians, intravenous drug users, recipients of blood transfusions, and people with hemophilia. Because of the latter three categories, a probable mode of transmission via syringes or exchange of blood became evident. The homosexual connection posited a possible sexual transmission; the Haitian link was much more enigmatic. After a few unfortunate and inaccurate names such as GRID (Gay-Related Acquired Immune Disorder) and 4H disease (for homosexuals, heroin users, hemophiliacs, and Haitians), it was agreed at a meeting in July 1982 to use Acquired Immunodeficiency Syndrome, in brief, AIDS, which from an acronym became a word.
None of our patients in Antwerp were intravenous drug users or Haitians. We also had no patients with hemophilia: Belgium’s supply of the blood product Factor 8, which hemophiliacs required to keep from bleeding to death, was still secure from the infection, as only domestic blood products were used and in a more conservative way than was then the practice elsewhere. But we did have what looked like AIDS patients. Together with Nathan Clumeck and a few other people, Henri and I founded an informal group where physicians who were seeing these patients could come together and share advice.
Then Jan Desmyter, a professor of virology at the Catholic University of Leuven created a National AIDS Commission. Actually, in typical Belgian style, three groups were formed: a Flemish one; a francophone one; and a federal, “Belgian” one. (I attended meetings of the Flemish and Belgian groups.) The rationale was that funding for certain topics—such as patient care—came from the federal government, while prevention campaigns were paid by the regions.
With most of our patients coming to us from Central Africa, I felt it was urgent to go there and take a look at the situation on the ground. If we were seeing 100 people from Central Africa coming to Belgium with this new illness,
there might be thousands who couldn’t afford the flight or obtain a visa. Nobody had done that—nobody had checked out what was happening in Zaire. Of course there were doctors in Central Africa, but except for a few surgeons reporting an increase in aggressive Kaposi’s sarcoma in Zambia and Uganda, there were no reports from Zaire, Rwanda, or Burundi, the countries of residence of most of our patients in Belgium.
The problem was money. Nobody in Belgium was interested in funding research on this disease. The European Commission’s grant for the Nairobi project was earmarked; I couldn’t just use it to investigate AIDS in Zaire instead.
In August 1983, I went back to Seattle, to attend a conference of the International Society for STD Research. I spoke with Dr. James Curran, the head of the CDC’s AIDS Task Force. I said we urgently needed to take a look at what was going on in Africa and I asked him for money. He’s a great scientist and a good man, whom I admire greatly, but he was simply too busy dealing with the epidemic in the United States, and even more so it seemed with fire-fighting the nonstop political crises that it was causing in the Reagan years. So, Jim simply had no time to follow up on our conversation. (Later he became the strongest possible supporter of our work on AIDS in Africa.)
Then in September I went to the International Conference for Infectious Disease in Vienna. By this time we had firmly identified 40 patients with the new syndrome in Belgium, 37 of them from Central Africa. I spoke with Tom Quinn whom I had met in Seattle where we both worked with King Holmes, now an infectious disease specialist at the National Institutes of Health (NIH) in Washington and at Johns Hopkins University. We had also been in touch since then about chlamydial infections. He had recently completed a short visit to Haiti to take a look at the AIDS situation there. Tom took me over to see Jack Whitescarver and Richard Krause, who was then the director of the National Institute of Allergy and Infectious Disease, which was the leading US agency for basic AIDS research.
Right there in Krause’s hotel room, I made my case. And right there, he said, “OK, I’ll give you a hundred thousand dollars. You can go to Kinshasa, we’ll make it happen. But there’ll be just one trip. And we will be doing it together.”
Tom Quinn and I set a date in October to go to Zaire. We agreed to meet in Antwerp first, to lay out our plans. He was going to bring at least one colleague from NIH, and I asked Henri Taelman to come along, so we needed to get everyone on the same page. Also, in the back of my mind I was thinking, This time, I’m going to be the team leader—because right or wrong, I felt that with Ebola our lab had been the first one to come up with the problem and isolate the virus, but the CDC had taken over the whole operation as they had the money and the experience. Tom was fine with that; he had a lot of extremely useful experience with parasites and STDs in gay men, but he had never been to Africa.
But Tom worked at the NIH. And within the American health bureaucracy, there was something of a turf war on AIDS between the NIH, in Washington, and the CDC, in Atlanta. When the CDC got wind of our planned Kinshasa trip, they decided to send their own investigator to Zaire. Luckily it was Joe McCormick, the man who had investigated Ebola in Sudan, and he phoned me to talk it over. I saw that I had fallen into an institutional rivalry that could become very toxic, and I suggested we should all go together. Luckily the US Secretary for Health and Human Services had also recently ordered the CDC and NIH to collaborate more: this definitely helped.
We all met in Antwerp a few days before our planned departure for Zaire. Despite the almost palpable presence of clashing agendas, this meeting went fairly smoothly except for the heavy-handed intervention of the director of the Institute of Tropical Medicine, who declared solemnly that “we Belgians” knew the Congo—we knew “these people.” Therefore I, Peter, should be team leader. I was hugely embarrassed by this, but although my US colleagues looked at my director with disapproval they indeed proposed that I should be the team leader. The NIH might not have accepted someone from the CDC and vice versa. I was an outsider; they could use me to bridge a difficult mix.
In the Sabena DC-10 on our way to Kinshasa on October 18, we sat together, and agreed on an action plan, even on what we would do with the specimens we collected, and who would figure on the publications coming out of the studies. I had just bought a small Brother typewriter with a small memory and printer, and we all signed a detailed agreement without any dispute.
WHEN WE LANDED at Ndjili airport, I could not help but think of my first visit, exactly six years earlier to investigate the Ebola outbreak. This time I was much better prepared, had much more confidence in myself, and also felt I was coming back into familiar territory. But the excitement of discovery in the air was equally there. There was the usual mob scene at Kinshasa airport. I shepherded everyone to the Fométro, where I had stayed in 1976; Jean-François Ruppol arranged our stay, as always helping as much as he could by also providing precious transport for the duration. We didn’t actually have any kind of official government permission to do research on AIDS in Zaire, and without it we could be thrown out of the country; I was hoping that he would help us with that, too. The first evening, we had dinner in an Italian restaurant, Chez Nicolas, across the street from the Fométro office, to discuss the situation and to draft the questionnaire we would use to ask people about possible risk factors and their sexual practices.
Ruppol, Taelman, and McCormick were all old hands in Africa, but none of them was really at ease with publicly discussing sexual issues; they went red with embarrassment, especially when the conversation devolved into a discussion about the rumor that a famous American actor had been hospitalized for putting a hamster in his anus. Tom Quinn has a very loud voice, and at one point I looked up and realized that the entire restaurant had fallen silent. Everyone was glued to every detail of our conversation. So within about 48 hours the entire expatriate community in Kinshasa knew that a research team had come to Zaire to look at a weird sex disease.
Actually, it was thanks to Joe that we finally received the government permissions we needed to start working; his friend Dr. Kalisa Ruti was the chief of staff at the Ministry of Health. We went first to Mama Yemo Hospital, the largest hospital in Zaire. Dr. Bila Kapita, a skinny cardiologist who was head of Internal Medicine, gave us a tour of the vast and filthy compound.
When I was at Mama Yemo in 1976, when we were checking for Ebola patients, it seemed squalid enough. But by 1983 the conditions had grown far worse. Some of the buildings had literally collapsed, there was garbage rotting all over the courtyard—this was a hospital!—and when we walked into the wards, there were patients absolutely everywhere, two to every metal bed, with more on thin, soiled mattresses lined up along the floor.
Kapita was a small and austere man with a heart of gold, always a discreet smile, raised by Swedish missionaries in Bas-Congo province, clearly highly competent and dedicated to the people in his care, and investing in the development of the village he came from. A rock of integrity. Later I spent some time with him in his remote village, where his home was the only house of bricks and where he was investing most of his earnings, besides ensuring a solid education for his children. He had gone to the trouble of putting together a pile of files for us, representing patients he had seen and who he now thought might have had AIDS. This was October 1983, and he said he had been seeing such patients for a few years. But nobody had ever put it together and done something about it.
It was a really tall pile of paper. We agreed to take a look at it later, and then Joe, Tom, Henri, and I began to examine some of the patients. They were mostly twenty-five- to thirty-five-year-olds, with enormous weight loss, intractable diarrhea, and that ghastly, glassy-eyed look. Many of them had dramatic itching, with skin symptoms that had not been described in the literature. They had a lot of sores in their mouths—yeast infections and very ugly herpes sores—and eye infections. A few had Kaposi’s sarcoma markings, especially on their legs, and many were breathing very superficially; perhaps the respiratory distress stemmed from tub
erculosis. There was also quite a bit of cryptococcal meningitis, which we knew was a marker of AIDS. Kapita told us that their symptoms were remarkably aggressive: they progressed with startling speed and seemed not to respond to treatment.
We all were silent and staring at each other. Then Kapita opened the door into the women’s pavilion and we took a look at another huge ward that was overflowing, quite clearly, with exactly the same thing. That morning we saw 50 or more cases of what we thought to be AIDS, though we still needed laboratory confirmation to be sure of our clinical impressions. And in 1983 that was a lot, because fewer than 2000 cases had been reported worldwide, and a lot of those people were already dead.
When we got out of there, I took a deep breath, as I was nearly breathless. I remember it well—a physical sensation that was so strong, I wrote it down. It wasn’t the happy, tingling energy of scientific discovery. There was curiosity, of course, and an urge to find some kind of solution, but also the overwhelming feeling that we were facing a truly momentous catastrophe. And I suddenly realized that this epidemic would take over my life. It was my aha moment.
I recalled the nightmare that had haunted us in 1976: that Ebola would hit Kinshasa. Now I was back, and this new epidemic had hit Kinshasa. And given everything I knew, or thought I knew, this was going to be a lot more fatal than Ebola. AIDS was largely invisible, and I knew that meant it might be uncontrollable. Ebola was just the overture. This time, I knew, we were looking at the worst epidemic I could imagine, the greatest assailant I would ever face, something that would absorb all the energy that I could throw at it, and far more.
In my mother tongue, Dutch I wrote in my notebook: “Incredible. A catastrophe for Africa. This is what I want to work on. It will change everything.”