No Time to Lose: A Life in Pursuit of Deadly Viruses (13 page)

BOOK: No Time to Lose: A Life in Pursuit of Deadly Viruses
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At the university, the professors were smart and committed, maintaining high standards of medical education. But the sobering reality was also that medical services were deteriorating fast. Women routinely bled to death; the level of preventable neonatal deaths and infections was inexcusable; and the appalling conditions I saw in Pumwani really motivated me a lot to work on simple methods of at least preventing the worst kinds of postpartum infections.

Beginning in about 1900, it was established medical practice to administer silver nitrate eyedrops to all babies at birth to prevent them from acquiring gonococcal infection from the mother and possibly going blind. It was a triumph of public health in Europe. But Nairobi hospitals abandoned this practice after caustic concentrations of silver nitrate—a consequence of evaporation—caused severe eye damage. Damned if you do, damned if you don’t.

So Marie Laga and her colleagues Pratibha Datta and Warren Namaara did a number of classic studies to look at new ways to prevent the transmission of gonococcal and chlamydial infection by using safer tetracycline ointment. At the same time, we began working on ways to treat babies who had already been infected. As it turned out, instead of the recommended penicillin treatment, which was longer term and required hospitalization, all it took was one shot of ceftriaxone, a fairly expensive cephalosporin. Follow up of the babies in the slums was a real challenge, because “regular” addresses often did not exist. Therefore mapping was essential, with information such as “Go to toilet number 7, then three streets to the left, and she lives on the first house on the right with a red roof.” This work remains the basis for current international guidance for the prevention and treatment of neonatal conjunctivitis.

I thought perhaps this was my niche in science: figuring out the connections between sexually transmitted disease in pregnancy and complications in newborns, and then figuring out ways to solve those problems before they happened. It was the kind of work that made my heart lift: applying solid science to a complex problem in poor countries, and developing better ways to prevent and treat disease—in a sense, producing the goods that other clinicians use.

When we started the project we had no business plan, no specific goals, and hardly any money beyond one year of functioning. We were young, optimistic, and committed to solving the formidable problems of ill health Kenya was facing. The challenges were enormous, and none of us had firsthand experience in solving them—logistics, finances, publication rights, and day-to-day management.

Nowadays there are dozens of similar projects in Africa, but at the time we began, none focused on sexually transmitted diseases and on women’s health. The few existing research programs were nearly all linked with the former colonial powers, whereas it was always important to us to strengthen the capabilities and infrastructure of our African partners. I am particularly proud of the large numbers of Africans, North Americans, and Europeans we trained in Nairobi. Many are now established clinicians, epidemiologists, and researchers in their own right.

Of the researchers whom I recruited for our Nairobi project, almost all were women. This was far from the traditional approach: men dominated research in Africa. But I knew it would make a difference, in terms of the degree of attention that they paid to the African women on whose behalf we were working. Many a time I examined a woman or talked about a case with a colleague and felt overwhelmed with anger. These infections were not just painful, they caused a great deal of permanent damage. Infertility is a drama for women anywhere in the world, but in Africa it can destroy you—your marriage, your value in society, your self-worth. I wanted to dispel the unspoken and cruel assumption that if African women had a fertility problem perhaps that was not a terrible thing.

IN MANY WAYS
I loved living in Belgium. I felt the country was changing for the better—becoming more international, particularly thanks to Brussels’ being the headquarters of the European Community, NATO, and a growing number of corporations, with a thriving economy and growing skills in biotechnology and microchips. I loved the food, the artistic life, and the social culture, centered on neighborhood cafés. But there was a strange atmosphere in the country in the early 1980s. There were a number of scandals involving kickbacks to individuals and to political parties, and ultra-right-wing activism by secret groups. A gang of killers went around the country, shooting up stores and supermarkets. A parliamentary commission investigated these crimes, but they were never solved. The extremist Vlaams Blok party emerged; it was mixed up with Flemish nationalism, and xenophobia, and campaigning for the independence of Flanders.

One evening a week I volunteered at a free youth clinic in a battered old terraced house near the Antwerp central station, which mostly involved prescribing contraceptives. Many doctors in those days wouldn’t prescribe the pill to unmarried girls and women, let alone help women find abortions if that was what they desperately wanted. I also saw many drug users, an extraordinarily difficult group to work with as a doctor and emotionally charged for me—I had lost a friend from medical school to an overdose. He was one of our most brilliant students, and I never came to grips with his addiction and death, which occurred when I was in Zaire during the Ebola outbreak.

Often when I left for Africa I felt I could be more useful: I could make a difference. I welcomed the sheer physical space; Belgium is one of the most densely populated countries in the world. There was also the joy that I perceived in so many African cultures. People were poor, but in their poverty they were creative and energetic. In Belgium, by contrast, people complained so much, from the weather to their aches and pains to the state of hospitals and schools, and this seemed to me a gigantic waste of time and energy: Belgium has some of the best education and health care in the world. As our Nairobi research program grew, I began to travel much more widely around Central and West Africa. I went several times to Burundi, where the Institute of Tropical Medicine had a program to train doctors who had received substandard medical education in the former Soviet Union. I also helped out with one of Pattyn’s research projects, monitoring some of his research on the treatment of leprosy, in Burundi and Senegal.

There was something of a revolution underway in leprosy treatment. Up to then, one form of leprosy (“paucibacillary” or “tuberculoid”) was fairly easily treatable, although the treatment was long. But in lepromatous leprosy—where leprosy bacilli appear all over the body—the patient’s immune system was so damaged there was no real treatment. Pattyn’s group helped show that if you used several drugs in combination, you could actually cure the disease. It was the basis of the near-elimination of leprosy today. The work brought me full circle, to Father Damien, my childhood local “saint,” who tried to care for and treat lepers in Hawaii. While I was still searching my way through the fascinating worlds of academia, research, clinical care, and international development, I was accumulating highly diverse experience and getting ready for the next chapter.


PART THREE

CHAPTER 10

A New Epidemic

M
EANWHILE, IN ANTWERP,
I became the go-to doctor for people arriving from Africa with embarrassing tropical infections and gay men seeking discreet medical advice. Some of the time, men and women who consult a doctor regarding matters below the belt are actually expressing psychological difficulties—pain in relationships. So many of the patients I saw at my clinic in Antwerp were actually the worried well. But the gay men that I saw displayed a truly baroque variety of illnesses, and there appeared to be a real explosion in the homosexual community of syphilis and hepatitis B. If some kind of epidemic wave was underway, we definitely needed to do something about it; but first, it needed to be documented. So, just as I did in Nairobi, I took a few of my students and went out to do a survey at what was clearly the local ground zero: Antwerp’s gay bars.

There were a lot of them. I had gathered, from conversations with gay friends and patients, that the homosexual community in Antwerp—like everywhere else in Europe—was pretty hypersexed. But I wasn’t prepared for what that really meant. I remember the first leather bar we went to, where I faced the startling sight of a man with leather chaps strapped across his bare bottom. And I was particularly surprised by the anonymity of the sex.

In Belgium, the early 1980s were a time when gay men at last felt they could burst into the open. (It wasn’t like Belgium today, when a man easily mentions that he went somewhere with his husband, now that same-sex marriage is legally and socially accepted.) There was still quite a lot of discrimination; it was difficult, for example, to be an openly gay schoolteacher. But Antwerp was then funkier than Brussels, more connected to havens of tolerance like Amsterdam, and far more relaxed about homosexuality than the rest of the country. It had a lively fashion and art scene, a port and a sense of openness to the world, which may have explained the kind of sexual acting-out that I was seeing.

We took blood in the bars, and estimated the prevalence of various STDs. Seven percent had syphilis, and 34 percent had had hepatitis B, figures that were indeed far higher than for other populations in Belgium. We organized a vaccination campaign for hepatitis B, with flyers and feedback sessions in the gay community. And of course this brought more gay patients to our clinic; indeed, that was the intention: to seek people out and treat them. They received state-of-the-art treatment and advice. I’ve also always, instinctively, felt it’s important to touch patients—take a hand, hold a shoulder—to help establish a real connection. My first experience, long ago, was with a leprosy patient, when I first began working with Pattyn. It was a Belgian priest, and he recoiled and said, “No—don’t touch me.” He was convinced I would catch his disease, and when I told him I really would not catch it, he almost broke down. But I was never frightened of touching. I wouldn’t obviously go with bare hands somewhere where there’s blood, or into someone’s mouth, but touching the skin? There’s always soap.

IT HAD BEEN
almost five years since Ebola, and I was still fascinated by the sudden epidemic, not the chronic problems of medicine, but the rush of adrenaline that comes with a mystery outbreak. Anyway, it meant that I paged through every issue of the CDC’s
Morbidity and Mortality Weekly Report
(“
MMWR
” for the initiated), which would report on outbreaks in the United States and often also in other countries. And on June 5, 1981, the
MMWR
ran an item on five young, white gay men in Los Angeles who’d contracted
Pneumocystis carinii
pneumonia, which up to then almost exclusively appeared in severely immunosuppressed patients and rarely so since being identified in orphanages in Europe after World War II. All five men also had aggressive infection with cytomegalovirus. Soon after that first publication, cases were reported from other parts of the United States, with some men having aggressive Kaposi’s sarcoma, a rare skin disease usually seen in Central Africa, and occasionally in older white men of Mediterranean and Jewish descent.

Because this seemed to be a new syndrome—and it was occurring in gay men—I read the item with more attention than usual. It rang a little bell, though not necessarily the correct bell. This was something new, something exciting and also intellectually interesting—a mystery. Gay men. Symptoms of unknown origin. I didn’t immediately think of Africa, or about the Greek fisherman whose body I helped autopsy in 1978, but I wondered whether this was also happening in our gay community in Antwerp, in particular after the subsequent reports of what still did not have a name.

Then in October 1981 I went to Chicago to attend the annual meeting of ICAAC (the Interscience Conference on Antibiotics and Antimicrobial Chemotherapy) and the Infectious Disease Society of America, of which I was a member. There were a number of talks there about this new “gay syndrome” (a syndrome is a group of symptoms and signs that collectively are characteristic of one or more diseases). The hallmarks were Kaposi’s sarcoma and
Pneumocystis carinii
pneumonia, so again, I didn’t make any links with African patients we started to see in Antwerp. But when I returned from Chicago, I talked about it over a beer with my friend Henri Taelman, who was the head clinician at the Institute of Tropical Medicine.

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.

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