No Time to Lose: A Life in Pursuit of Deadly Viruses (14 page)

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 tuberculosis. 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.”

CHAPTER 11

Projet SIDA

S
O THAT WAS
it: a second trip to Zaire that changed my life. The Ebola epidemic had transformed me when I was in my twenties; and now, seven years later, with this trip to Mama Yemo Hospital in Kinshasa, I was transformed again.

I sat on the bed in the room we were sharing at the Fométro that night and wrote down the thoughts that came to me as I faced the prospect of devoting a huge portion of my professional life to pursuing another lethal epidemic in Central Africa:

PROS:
INTERESTING AND NEW

• Huge problem

• Making a difference for people

• Prestigious

• Exciting research

• Lot of publications and possibility of developing
a long-standing program in Zaire

CONS:

• Several trips a year to Zaire, in addition to Nairobi

• A lot of administrative fights in
Zaire, Belgium, with the Americans

• Mediating permanent conflicts

• Constant reports to the NIH

I tried to dissect things down to bullet points, to very simple questions. But these are often not that useful in decision making, as was the case here. I didn’t need the list; I already knew the answer in my gut. It was one of those very rare moments in life when you can almost physically feel the trajectory of your life shift. I had met something unknown, enormously powerful, that I, with my experience in Africa, and as a microbiologist, was in many ways equipped to hunt down. I knew I was going to pursue this thing as far as I could.

Still, the list that I came up with was clear. This was going to be a passionately exciting adventure—an opportunity to influence the course of history—but it would also mess up my professional and personal life with way too much travel and create enormous political and bureaucratic tangles.

Indeed, the next page in my notebook contains observations about a meeting we had the next day at the University of Kinshasa with Professor Jean-Jacques Muyembe, now the dean of the medical school. He was a good man and a very able scientist, but the university was in dire straits professionally and financially, dependent on rapacious officials in the Ministries of Health and of Higher Education. I knew him from Ebola days, as he had led the first team that went to Yambuku before the internationals arrived. He asked us for subsidies, scholarships, a budget to help set up a group on AIDS work, reagents, and also a commitment to produce
two
publications, so that the staff from the University of Kinshasa would also get scientific recognition. So the complications of working in a country struggling with poverty and failed governance came up right away. This meeting also exacerbated my own feelings of impotence: I knew that Muyembe’s requests for help were all legitimate and yet I was unable to do much to assist him.

We needed to start collecting and examining blood samples. We set up a small lab at the Cliniques Universitaires with Sheila Mitchell from the CDC doing cell counts by hand. There was still no accepted laboratory test for the cause of AIDS. A team headed by Professor Luc Montagnier of the Pasteur Institute in Paris had identified the virus causing AIDS—he called it lymphadenopathy associated virus (LAV)—from a gay man who had traveled in the United States. But there was still no serological test for “LAV” available, and there was dispute about whether it was the cause of AIDS: Robert Gallo from the US National Institutes of Health claimed to have independently discovered the virus causing AIDS, calling it HTLV3. (Later it became clear that his virus was the same as Montagnier’s.) Still other people theorized that the cause of AIDS was not a virus but some combination of various toxins.

Thus, initially the best marker for the virus was the ratio of T lymphocyte “suppressor” cells and “killer” cells, and all of them had to be counted manually. A little later an energetic young French researcher, David Klatzmann, showed that the human immunodeficiency virus, as the cause of AIDS would be called, selectively killed T lymphocytes with CD4 receptors, which are like the traffic cops of the immune system. Following Klatzmann’s discovery, we no longer had to measure T helpers, just CD4s. And later still, we had the antibody test. But in 1983 it was still all far more complex and indirect.

We stayed in Kinshasa for five weeks, taking samples and working out a clinical case definition, because we knew that people would tell us, “This thing you’ve found in Africa—it’s not AIDS, it’s immune deficiency, maybe it’s something to do with malnutrition or parasitic infections.” We were working in an area of obvious diagnostic uncertainty, and we wanted our data to be unchallengeable, rock solid so that what we called a case of AIDS was, beyond dispute, a case of AIDS.

By November 2 we had about a hundred cases from Mama Yemo Hospital and the University Hospital that we felt were probably AIDS, but we were certain about 38 of them: 20 males and 18 females. Ten of them died during the study period, and 8 more died before the end of 1983, giving a 47 percent fatality rate within three months. They had striking clinical features: profound weight loss, with punishing, intractable diarrhea of unknown origin that seemed completely resistant to treatment: you don’t often see that kind of diarrhea in adults. They were also plagued by persistent fever; headache; cough; difficulty in swallowing; oral thrush; swollen lymph nodes; dramatic itching with goosebump-type skin lesions; cryptococcal meningitis; herpes; oral candidiasis; and bilateral pneumonia. Sixteen percent had disseminated Kaposi’s sarcoma. Twenty-five percent showed past or present syphilis. Men reported a lifetime average of seven sex partners, while the women (who were younger than the men, and almost all divorced) averaged three. The chronology suggested female-to-male transmission as well as male to female, and though this wasn’t hard evidence, it was the first suggestion of female-to-male transmission. We could find no suggestion of homosexuality of drug use.

We also did a rapid overview of the hospital records, using cryptococcal meningitis as a marker, as the ubiquitous and normally innocuous fungus
Cryptococcus neoformans
only causes severe infections such as meningitis in people with severe immunodeficiency. And we found a few cases dating back to 1975, though it was impossible to confirm that they were AIDS. There was about one case per year until 1979 in each of the hospitals—University Hospital, about 40 minutes’ drive from downtown, the Clinique Ngaliema, the Clinique Kinoise, and Kitambo Hospital, as well as the massive Mama Yemo, which was the only one that offered free medical care. But since 1980 each hospital showed more than 30 cases per year, which suggested the real boom in AIDS infections in Kinshasa might be roughly simultaneous with the one that appeared to be underway in the United States.

One day I did a very stupid thing: something I had warned I don’t know how many hundreds of students never to do. I
recapped
the syringe that I had used to draw blood. I tried to put the plastic cap back on the needle before throwing it away. Such a pointless gesture. (It must be something to do with the Flemish obsession for neatness.) And I missed. I stuck the needle into my finger. I watched the blood pool up from the tiny puncture wound and hastily pressed it as hard as I could, hoping to squeeze out every drop of blood. There was nothing else I could do except disinfect it and move on. There was every reason to suppose the man whose blood I had just drawn had AIDS: he was in a terrible state. But there was no way then to know whether he was infected or I had been infected.

On my way home I flew to Johannesburg to speak at an Infectious Disease conference at the University of Witwatersrand. I could talk of nothing but AIDS and the epidemic we had just seen in Kinshasa. There was just one AIDS case in South Africa back then: a gay white man who had probably become infected while traveling in the United States. These were well-trained physicians I was talking to, eager to learn about AIDS, fascinated by what I was telling them about the outbreak in Zaire. But no, they kept telling me, no: they were certain, there was absolutely no unusual immune deficiency in South Africa at all. (Today we know that they were correct. Although later South Africa was swamped by the world’s biggest AIDS epidemic, in 1983 the virus had not yet hit the country.)

When I got back to Belgium I spoke to Tom Quinn, who had left Kinshasa earlier, to attend a World Health Organization meeting in Copenhagen. He said the whole conference was about AIDS in Europe and North America. Africa didn’t figure at all in the picture, and there was no discussion of AIDS among heterosexuals who didn’t use drugs.

Early 1984 I sent the blood sera we had gathered to Montagnier and Françoise Brun-Vézinet in Paris, so that they could take a look at the antibodies, checking them against the so-called LAV virus that they had identified. Even though Tom and Joe were American, there was no dispute about sending our samples to Paris when I suggested it following a brief encounter with Montagnier at an EC meeting on my return to Europe.

One of the blood samples we sent to Montagnier’s team was from the man whose blood briefly mixed with mine when I made the stupid error with the needle-stick. And I also sent them my blood. I was really scared.

I sent the sera under code, and I was the only one who had the code. Montagnier’s lab had no way of knowing which samples were from suspected AIDS patients and which ones were healthy controls, so in some sense this was just as much a test of the validity of his research as it was of ours. When he phoned me with the results, in February 1984, he seemed as nervous as I was. He went down the list—
sample number 2, positive; sample number 3, negative
—and I checked them against the code. Oh my God! That was it! He had a test! Montagnier’s positives included just about all the people with clearly manifested clinical signs of AIDS: 97 percent. And although some of the people who had no symptoms were also positive, that result was not necessarily false: they might be asymptomatic carriers of the virus.

It was a very important and thrilling moment. And to me, equally thrilling was that my blood came out negative. The man whose blood briefly mingled with mine was antibody positive but I was clear. The relief was almost too much to take. It was a real life lesson for me and, ever since, I make sure that every HIV test performed by any team of mine involves the least possible waiting time before the result is given to the patient. This is not a routine procedure where you can tell people, “Come back in two weeks.” The anxiety is simply unbearable.

Coincidentally, it was about this time that I read
Shadow on the Land
, a great book by Thomas Parran, a US surgeon general in the 1930s. He brought syphilis out of the closet; back then you couldn’t even say the word “syphilis” in polite conversation, not to mention discuss its transmission. He estimated that well over 1 percent of the US population was infected, and it was Parran’s drive for public awareness about syphilis, just as much as the discovery that penicillin could cure it, that drove the shadow from the land. (By the end of World War II, the US Public Health Service estimated that 1 in 10 Americans would acquire syphilis in their life time.) The book was an eye-opener for me. I had no clue that the Western world had so recently had such a huge syphilis problem, and I had never really thought deeply about the nature of bigotry about the disease, and the lethal effects such denial could have. (In 1998 I was awarded the Thomas Parran Award by the American Sexually Transmitted Diseases Association; this moved me greatly.)

Some people in Europe often clearly looked on AIDS as God’s way of saying you shouldn’t be a homosexual. The discrimination against AIDS patients was horrible. To me it recalled my childhood afternoons at the Father Damien museum, mulling over the hideous and medically unjustifiable stigma against leprosy.

I went on a live TV show with a colleague general practitioner from Antwerp, Dirk Avonts. We had painted a piece of broomstick in pink—it was pretty big, like a foot and a half tall, so it would show clearly on camera—and without giving any advance warning to the TV crew, Dirk showed how to put a condom on. That created quite a scandal and a flurry of letters to newspapers: how could we be permitted to broadcast such obscenity? My point was we needed to take this kind of shame out of the equation.

It wasn’t until July 1984 that our paper with the Kinshasa results appeared in
The Lancet
. Initially it was rejected as being “of local interest only.” (For another, later paper I submitted to the
New England Journal of Medicine
, an early referee wrote as sole comment: “it is a well-known fact that AIDS cannot be transmitted from women to men.”) People had already developed the mindset that this was “just” a
gay
disease. I never understood why a virus would care about the sexual preference of its human host, because I applied what Stanley Falkow had told me when I was working in his labs: put yourself inside the pathogen. From the perspective of a virus, what is sex between human beings but contact between mucosal surfaces? It may not sound very romantic, but that’s the contact that makes the virus jump from one cell to another to perpetuate its own life. I don’t think the virus cares whether the sex is good, or about the color or gender of the person who inhabits that mucosal surface. Granted, some types of intercourse may be more efficient than others but none was exclusive. So I was always puzzled by this dogmatic insistence on AIDS as a homosexual disease.

Meanwhile, I wrote up a $600,000 grant proposal for the NIH that was about 70 pages long, laying out a whole research plan for a three-year project to study what was happening in Zaire. We were all very excited about it. Six hundred thousand dollars—total—for a three-year program seems like so little today, but I was just an associate professor in those days, and I made $1000 a month at the exchange rate of the time. The major point was that our brief experience in Kinshasa already made clear that AIDS was, at least in certain conditions, a heterosexual problem. That meant that there was really an enormous potential for harm across the population as a whole.