No Time to Lose: A Life in Pursuit of Deadly Viruses (16 page)

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

I
N 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.

Of course it was Mahler, who was the host, who made the opening remarks, and what he said was basically, “Even though we’re here to raise money for AIDS, and thanks for coming, don’t forget there are so many more important health problems in the world.” Talk about a fund-raising strategy; you could see Jonathan’s face going green. So then I stood up and stoutly pledged Belgium to do something extremely vigorous but suitably vague. Basically: “We welcome this program, which is badly needed, and we will fully support it.” And then the United States jumped in: “We fully agree with the representative of Belgium.”

It was fine: the donor country governments carried it through, and they raised over $50 million. But among some people at WHO—who in the past decade had abandoned “vertical” health programs aimed at single diseases, plugging away instead at primary health care across the board—all this probably reinforced the feeling that AIDS was a competitor for their limited funds.

Part of the problem with WHO was and still is systemic: it was an inborn error of structure. The regional directors of WHO (there are six) are elected by the Ministries of Health of their regions. Thus they have political legitimacy that in a sense is as large as that of the director-general of WHO in Geneva, who is elected by the same member states. Although the director-general is nominally their boss, the regional directors lead their regions in a very sovereign way. Many were fundamentally hostile to new ideas. These men refused to give up control over their regions to a new centralized AIDS program in headquarters in Geneva. They would be Mann’s nemesis.

DR. ROBIN RYDER,
a curly haired, infectious disease specialist who worked for the CDC, replaced Jonathan as the director of Projet SIDA. Robin thrived in Kinshasa, laughing all the time, joking with everyone: he was a convivial man, as well as being very good at his job. He expanded the project enormously, until there were over 300 people working there, and he organized huge cohorts to study various aspects of HIV infection. He was also meticulous. Running such a large office in Kinshasa must not have been an easy thing, and he was lucky to have Frieda Behets to do the job. Logistics alone were a major headache, in a city where the phone almost never functioned. It was Robin who really fueled the whole project to create a proper blood bank. By this time, our estimate of HIV prevalence in Kinshasa was 3 to 4 cases per 100 adults. And we were still seeing plenty of transfusion-related HIV infection at Mama Yemo Hospital: about 1000 cases a year; more, in that one hospital, than in the whole of the United States at the time. This was not a research issue but it was an ethical one, and it was Robin who got the German international aid agency, GTZ, to set up a real blood bank and staff it.

Typically, an hour after someone gave blood it was being used in surgery. So the blood bank needed to use rapid tests rather than the then-more-accurate but slower ELISA. However, the rapid tests were now coming onto the market in a situation of pure anarchy: not all were reliable, and developing countries had no ability to certify or approve them. My lab in Antwerp began doing quality control tests on the rapid tests, funded by the AIDS program at WHO. We put together a serum bank, with sera from people well-documented as infected with HIV, and others with “problem” sera—patients who had autoimmune diseases such as lupus, which may give false positive to HIV tests, or from countries with endemic malaria, another key infection that we knew sometimes led to false results with the early HIV antibody tests.

However, some people in Kinshasa continued to be infected with HIV via blood donations, because technicians weren’t available to do the testing at night and on weekends. We could see that almost all of them rapidly became infected with HIV. A blood transfusion was clearly much more likely than sex to transmit HIV, and the resulting immune loss also seemed to be much more rapid and devastating.

However, the majority of people with HIV in Kinshasa were infected through sexual contact, and it was important to design interventions to prevent heterosexual transmission. Based on the principle to start where the problem is greatest and where you can easily reach people at risk, we decided to try to prevent HIV infection among sex workers and their clients. The Matonge district in Kinshasa was the obvious place to work. So Marie Laga and Nzila set up a clinic for prostitutes in Matonge, based on our experience in Kenya. Matonge wasn’t exactly a red-light district—there was a lot else going on there too—but there were plenty of bars and
dancings
, and all day long you could hear music in the streets, the hypnotic whine of the Congolese guitar. Nobody could sit still; the nurses would all be swaying to the music, there was laughing and chatter: it was a great atmosphere for a medical center.

We educated sex workers about AIDS—especially condom use and how to negotiate it with their clients and partners. We offered medical care, not only for sexually transmitted diseases, but also in general for the women and their children. We tried to comfort the women with HIV infection—at the beginning of the project a staggering 26 percent were positive—and in those days there was no treatment for HIV infection. We lost many women, who left behind too many orphans to be taken care of by their extended families. Many of these children ended up on the street. It was heartbreaking, but we were powerless in the absence of any treatment. Our center soon became a popular place with the whole neighborhood. After a few years, there was a significant decline in new infections.

Ryder was a pediatrician, and he was also instrumental in pioneering studies of mother-to-child transmission of HIV, at a time in the 1980s when it was not clear how HIV was transmitted to neonates and infants, and what the risk factors were. In Kinshasa, HIV-infected pregnant women were transmitting HIV to their babies with a frequency of 40 percent, compared to 5 to 10 percent in the United States. We also did a significant amount of work on cofactors for sexual transmission of AIDS. It was becoming clear from our work in Nairobi that genital ulcers from chancroid and chlamydia can favor the transmission of HIV. The high prevalence of poorly treated sexually transmitted infection in many urban populations of Central Africa was creating a highway for heterosexual transmission, multiplying its efficiency. This was of crucial importance for future programs to prevent the transmission of HIV, because it meant that by treating other sexually transmitted infections, we could hope to reduce the incidence of HIV.

Bob Colebunders’s team and his successor Jos Perriens were among the first to unravel the connection between tuberculosis and HIV infection. They found that over 20 percent of patients with tuberculosis in Kinshasa also had HIV, much higher than in the general population. The connection was immune deficiency, which makes people vulnerable to tuberculosis disease, just as to other infections. Because infection with
Mycobacterium tuberculosis
is so prevalent already in developing countries, the AIDS epidemic generated in its shadow an epidemic of tuberculosis that became the leading cause of death in AIDS patients in Africa. Among other things we also showed that the then used treatment for tuberculosis in Zaire did not work for patients with dual TB and HIV infection, and developed a more effective treatment. Colebunders also discovered that a particular type of urticaria-like skin rash was diagnostic for HIV in Central Africa, as is shingles in adults. Projet SIDA was an apparently unending source of new discoveries: we did more groundbreaking work in a year than most research projects in Europe could hope to uncover in five years. Every year Jim Curran from the CDC and I met in Kinshasa with Tom Quinn, representing the NIH, to review the scientific highlights, a moment of pure joy for the brain. We got along extremely well: there were great celebrations with all staff in Matonge, with live music, and Jim Curran cracking memorable jokes. It felt like one large family. But there was also some institutional positioning, and as the poor cousin, I had to use pretexts of “human capital” to attempt to demonstrate that we Belgians were contributing equally to the Projet SIDA budget, whereas the US government was actually paying the lion’s share.