The Mystery of AIDS in South Africa

1.

One Sunday evening in early May, I went for a walk in one of Johannesburg’s prosperous suburban neighborhoods. The whitewashed stucco houses on well-tended lawns with hissing sprinklers and swimming pools, the twittering birds, the leaning jacaranda trees lined up on quiet streets, resembled similar scenes in Los Angeles or Melbourne, Australia. That is, if it were not for the barbed wire curled above the gates, or the dogs that roared at me from behind each fence as I passed by. By the time I had walked half a block, it seemed as though all the dogs in Johannesburg were barking. I didn’t go far. South Africa lives under a kind of self-imposed curfew. By sundown, the streets from the Cape to the Transvaal are eerily empty. Gates are bolted, alarms are set, car doors locked, and windows rolled up.

South Africa is one of the most dangerous countries in the world that is not at war. Everyone I met warned me to be careful. One acquaintance spent ten minutes listing all the people he knew who, in the past six years, had been shot, killed, raped, or who had been hijacked in their cars, robbed, thrown in the trunk, and then deposited, naked, by a roadside. Another South African told me that the bank in his ordinary, middle-class neighborhood had been robbed five times in six months. A Johannesburg taxi driver said that, in his company alone, a driver is murdered every month. There were more than 50,000 reported rapes in South Africa last year, and this number has recently been rising. Reported rapes are believed to represent only a fraction of the actual number committed, and according to some estimates, as many as a million rapes may have occurred last year. A doctor I met who has worked in black hospitals in the Eastern Cape for decades, through the worst years of apartheid, told me she now sees a growing caseload of gonorrhea and syphilis in children as young as two years of age, the result of an epidemic of child sexual abuse.

Crime in South Africa affects everyone, black, white, Asian, rich, and poor. Last year, someone walked off with an entire automatic teller machine that had been installed inside a police building in Johannesburg. In Cape Town, rapes and burglaries have been committed by members of Parliament, within the Parliament buildings themselves. The sense of suspicion and paranoia seemed to me to pervade even the fancy shopping malls, tourist beaches, and expensive hotels. It even informs the country’s policies, including its response to the greatest health threat in its history.

I went to South Africa for three weeks in May to write about the AIDS epidemic there. AIDS is caused by the HIV virus, which is passed from person to person through sexual fluids, blood, or blood products, or from mother to unborn child in the womb or through breast-feeding. The virus destroys the immune system that protects the body from infectious diseases. A person may live for ten years or more with HIV and have no symptoms, but eventually his immune system begins to disintegrate, and other viruses, bacteria, and fungi, which a healthy immune system would normally fight off, take hold. AIDS is the name given to the syndrome in which the patient slowly rots alive from these opportunistic infections.

The South African Ministry of Health estimates that 4.2 million South Africans carry the HIV virus, and about 1,700 more people are infected every day. Those most at risk are poor black people, particularly those who have been socially displaced, such as migrant workers, truck drivers, sex workers, and miners from rural areas, and their wives, girlfriends, and children back home.

I became particularly interested in the AIDS crisis in South Africa last winter, when I heard that President Thabo Mbeki had begun to solicit the opinions of a murky group of California scientists and activists who believe that AIDS is caused not by HIV but by a vague collection of factors, including malnutrition, chemical pollution, recreational drugs, and by the very pharmaceutical drugs that are used to treat the disease. These “AIDS dissidents” may not agree among themselves about what the cause of AIDS actually is, but most of them seem to believe that the tens of thousands of scientists who work on HIV and AIDS are, largely unwittingly, part of a vast conspiracy cooked up by the pharmaceutical industry to justify the market in anti-AIDS drugs, such as AZT, worth billions of dollars a year. This conspiracy, the AIDS dissidents argue, relies on the demonization of HIV, a harmless virus in their eyes, and the promotion of wildly expensive, toxic drugs that have serious, even deadly, side effects. Mbeki is the only head of state known to have taken the views of the AIDS dissidents seriously, and many doctors and AIDS activists in South Africa and in the West have begun to wonder whether the President and his health minister have taken leave of their senses.

In the 1980s, the AIDS dissidents received considerable attention from journalists and even mainstream scientists who felt that the evidence that HIV caused AIDS was not strong enough. By now, however, the evidence that HIV is the cause of AIDS is very strong indeed,¹ and the implications for countries like South Africa are horrifying. During the past five years or so, the AIDS dissidents seemed to fade from the scene. They continued to publish their views on the Internet, but journalists and scientists paid little attention to them. Many people were surprised when President Mbeki began expressing interest in their ideas. When Mbeki invited a group of them, including Berkeley professor Peter Duesberg, to South Africa to present their views to a presidential panel on AIDS in Africa in May, observers were even more surprised. One scientist told me, “It’s like the movie Friday the 13th. Just when you think you’ve finally killed the monster, it just keeps coming back to life.” The interest that Mbeki has taken in the AIDS dissidents is more than an intellectual diversion. It is contributing to a pub-lic health disaster by distracting the Health Ministry and other official institutions from addressing the epidemic, and by failing to prevent HIV infection in South African children.

Western pharmaceutical companies now sell a range of some fifteen drugs known as anti-retrovirals for people with HIV infection and AIDS. In 1998, researchers in Thailand and the US found that a cheap, short course of AZT taken around the time of childbirth can reduce by half the chances that a mother will transmit HIV to her baby. Many developing countries, including Thailand, Botswana, and Uganda, are now putting programs in place so that eventually every HIV- positive pregnant woman will be offered AZT, or another anti-retroviral drug called nevirapine, which has also proved effective in preventing transmission of HIV during childbirth.

In 1998, a number of maternity wards in South Africa’s public hospitals were also getting ready to establish pilot projects to see how feasible it would be to offer AZT to every South African HIV-positive mother-to-be, no matter how poor. Almost immediately, then Minister of Health Nkosazana Zuma suspended public funds for these projects, because, she said, even these short courses of AZT were too costly.² AIDS activists and doctors mounted protests, but the Ministry of Health maintained its anti-AZT policy. Last winter, after the President began to entertain the ideas of the AIDS dissidents, he stated in an address to Parliament that AZT was not only expensive, it was also alleged to be toxic, or so he had learned from some of the AIDS dissidents’ websites. AZT would not, therefore, be administered to pregnant women attending public hospitals until it had been thoroughly investigated.³

Then in March, Parks Mankahlana, Mbeki’s spokesman, shed new light on the President’s thinking about AZT in an article in Business Day newspaper. The drug was not only expensive and toxic, he said, but was part of a corporate conspiracy to rip off Africa’s poor:

Like the marauders of the military industrial complex who propagated fear to increase their profits, the profit-takers who are benefiting from the scourge of HIV/AIDS will disappear to the affluent beaches of the world to enjoy wealth accumulated from a humankind ravaged by a dreaded disease….

Sure, the shareholders of Glaxo Wellcome [the company that makes AZT] will rejoice to hear that the SA government has decided to supply AZT to pregnant women who are HIV-positive. The source of their joy will not be concern for those people’s health, but about profits and shareholder value.⁴

Today, about two hundred babies are born in South Africa every day with the HIV virus. If all of their mothers had been given AZT around the time of delivery, as many as half of those babies might have been spared HIV infection and AIDS.⁵ In 1997 Glaxo Wellcome had offered the drug at a discount to the Health Ministry for use in public maternity wards, but the Health Ministry turned the offer down.⁶

Have you ever seen a child dying of AIDS? I worked on AIDS research in Uganda in the early 1990s, and what surprised me about the pediatric AIDS wards I visited there was how quiet they were. The thin, breathless children were too sick to cry. Before I left for South Africa, I had arranged to speak to some of South Africa’s most important scientists and government officials about the government’s anti-AZT policy, which did not make sense to me. What I found when I got there was even more disturbing than what I had expected.

2.

In the mid-1990s, scientists in the United States discovered that com-binations, or “cocktails,” of anti-retroviral drugs can help people with HIV live longer. The cocktails are expensive, must be taken according to complicated schedules, can have unpleasant side effects, and don’t help everyone. However, for many AIDS patients, the right cocktails of anti-retrovirals can add years of health to their lives. Since these drugs were developed in the early 1990s, hospital AIDS wards have been closing across the US and Western Europe, and many patients once on the verge of death have gone home, to contemplate a future they never thought they’d have.

The annual cost of AIDS drug cocktails is more than $10,000 per patient, and these days the only way a poor HIV-positive South African can obtain them is by participating in a clinical trial sponsored by one of the large Western pharmaceutical companies that make the drugs. These companies test their drugs in Africa because there are so many HIV-positive people there who have never taken anti-retroviral drugs before. Such patients are unlikely to have developed resistance to any of the individual drugs in the cocktails, and this gives the cocktails a better chance of success, which in turn allows the companies to obtain clearer results. At present hundreds of such trials are underway across the country, and HIV-positive South Africans seem eager to sign up for them. “People are desperate,” Florence Ngobeni of the Township AIDS Project in Soweto told me. “There is so much confusion and fear.” A doctor who runs clinical trials of AIDS drugs at the University of Pretoria told me that she has no trouble finding participants. “They come to me,” she said.

While I was in South Africa, a doctor named Costa Gazi, whom I was interviewing about the anti-AZT policy, told me about one clinical trial that seemed to have had disastrous results. I had read wire reports about the trial on the Internet in April.⁷ Around five hundred HIV-positive people had been enrolled to compare two different cocktails of anti-retroviral drugs at sixteen hospital clinics around South Africa. Since the trial began in September 1999, five participants had died, two of them from liver damage possibly caused by one of the drugs in the cocktails. According to subsequent news reports in the South African press, a sixth patient died in April.⁸ Gazi told me that five of the six deaths on the trial had occurred at a single hospital in Pretoria, called Kalafong, out of only forty-two patients enrolled there. In addition, six other patients from the same hospital had experienced side effects so severe that some of them had had to be hospitalized.

I wondered whether this could possibly be true. The reports that five out of five hundred patients died on the trial were disturbing, although perhaps they could be explained by the occurrence of unexpected side effects or cases of disease. But if, in fact, eleven people out of only forty-two had become very ill or died, something must have gone terribly wrong. I knew which drugs were in the cocktail being tested in the clinical trial. They are known to have side effects, which, in rare cases, can be fatal if patients aren’t properly examined and monitored. But thousands of people with HIV in Europe and the US have taken these drugs for years, and such severe, widespread toxicity has never been seen before.

Since then, I have been trying to find out whether these eleven people could have become seriously ill or died from such strange symptoms at one hospital in so short a time. For the moment, the truth is buried under endless evasions, fantasies, and myths; but the obstacles to finding out what happened are themselves revealing.

Shortly after I arrived in South Africa, the health minister, Manto Tshabalala-Msimang, gave a speech at the opening of the presidential AIDS panel, which consisted of about thirty-three people, of whom around half were AIDS dissidents and half were researchers from various countries who believed that HIV causes AIDS. “[This is] not just a simple academic indulgence…,” she said. “We place on record our determination [to fight the AIDS epidemic] with every means at our disposal.” Certainly this was arguable, since public hospitals were not providing AZT to pregnant women.

Other evidence suggested that the government’s response to AIDS was incoherent and disorganized. In financial year 1999/2000, the AIDS directorate in the Ministry of Health failed to spend 40 percent of its funds. In February, the government appointed a national AIDS council that included an athlete, a TV producer, numerous politicians, and two traditional healers, but did not include South Africa’s most important scientists, doctors, activists, and representatives of nongovernmental AIDS organizations. Less than 60 percent of South Africa’s health facilities are able to carry out AIDS testing and counseling, and few community health care clinics are equipped or staffed to manage AIDS patients. Some people with HIV have reported being turned away, even for complaints not related to AIDS.⁹ Ineffective and expensive campaigns to promote public awareness of AIDS had been mounted, including “National Condom Week,” during which free condoms that had unfortunately been stapled to a card were distributed. I had just visited a public hospital in the East Rand, where I had asked a doctor what he had to offer people with AIDS. “We have no [anti-retroviral] drugs here,” he said. “Not even for needle-stick injuries.”

This shocked me. Doctors and nurses frequently stick themselves with bloody needles by mistake, and in this way may expose themselves to HIV. If someone who is exposed to HIV through a needle stick takes a high dose of anti-retroviral drugs immediately afterward, he can reduce his chances of becoming infected by about 80 percent. These drugs, in kit form, are supposed to be available in all hospitals for health care workers at risk of needle-stick injuries. But according to this doctor, they were not, at least “not since the President started talking to [the AIDSdissidents].” I was later assured by Patricia Lambert, a lawyer who works with the health minister, that all hospitals were supposed to have anti-retroviral kits for needle-stick injuries, but I still wondered how even one hospital might fail to have them. Perhaps the Health Ministry was too preoccupied with the presidential panel and the AIDS dissidents to enforce regulations concerning these drugs, so that at least one hospital fell through the cracks.

Perhaps this distracted Health Ministry had also failed to implement adequate ethical and safety guidelines for clinical trials. Patients taking anti-retroviral drugs should be given regular blood tests to ensure that the drugs are not causing any side effects. Perhaps those patients who, according to Gazi, became ill or died at Kalafong hospital had been on a clinical trial that was poorly monitored. Maybe the patients got a bad batch of drugs from the pharmaceutical company, or were particularly sensitive to them for some reason, and no one recognized it in time. Of course there might have been other explanations for what seemed to have happened at Kalafong.

3.

About six miles west of Pretoria, the township of Atteridgeville blankets the tall grass and thorn bushes of the South African veldt. Like many of the townships on the outskirts of South Africa’s cities, Atteridgeville was built to house Pretoria’s black servants and factory workers.

As the grip of apartheid began to loosen, the population of Atteridgeville exploded, and the township spread over the brown hillsides. The gap between rich and poor is greater in South Africa today than in any other country except Brazil, and as you turn into Atteridgeville from the main road from Pretoria, the inequalities of the new South Africa unfold before you.¹⁰ On the hill stand rows of new houses, many of them built since the elections in 1994 for South Africa’s emerging black elite, mainly lawyers, civil servants, and businessmen. The hill is a modest version of the grander suburbs once reserved for whites. The houses are stucco, two-story structures, with tidy back yards and metal gates and signs indicating that the houses are alarmed and that trespassers will be met with an armed response. At the foot of the hill lies the neat grid of streets and tiny brick houses built for the workers during the apartheid years, and just beyond this stretches the vast plain of Atteridgeville’s squatter camp.

In the squatter camp, the listing shacks, made of sheet metal, wood, and heavy cardboard, are occupied by the overflow from the overcrowded township itself and by migrants from Zimbabwe, Mozambique, and other countries to the north. There are no municipal services here. Garbage piles up by the roadside, and the squatters string wires from power lines to steal electricity. Water is collected from communal taps and sewage is ad hoc.

A tin shack I visited in the squatter camp was dark and cool and orderly. Its dirt floor was swept, and bright plastic jugs were lined up beside a small portable stove. The few pieces of furniture were draped with patterned cloth, and an ornamental mask hung on the wall. Andrew, the shack’s resident, wore a sweater and button-down shirt, and looked very young, like a teenager about to have his yearbook photograph taken. He lost his job as a schoolteacher in Zimbabwe in the early 1990s, when the government imposed sharp cuts in the education budget to satisfy requirements for receiving a World Bank loan.¹¹ After the change of government in South Africa, Andrew and his wife came here to look for jobs, but without a South African degree, he had little hope of finding work as a teacher. Instead he picks up odd jobs as a plasterer or bricklayer on some of the new building sites on the hill.

In March of 1998, Andrew’s wife gave birth to a daughter. The baby did not thrive. When she was about a year old, she became feverish and ill and her mother took her to Kalafong, the large, state-run hospital that serves the black population of Atteridgeville. The child was tested for HIV and found to be positive.¹² Then Andrew and his wife were tested as well. When they were both found to be positive, they were referred to a Dr. Ingrid Steenkamp, who runs the HIV clinic at Kalafong. Dr. Steenkamp is also affiliated with the University of Pretoria, under whose auspices she conducts clinical research on AIDS patients.¹³

The University of Pretoria had recently been chosen by an American pharmaceutical company to be one of the sites for their clinical trial of a new anti-retroviral drug cocktail. The university in turn had chosen Dr. Steenkamp to recruit HIV-positive people to participate in the trial. She would conduct blood tests to determine who was eligible to participate, give participants the trial drugs, counsel them about how to take them, and conduct follow-up examinations and lab tests to determine how well the drugs were working and to detect any side effects. Because Dr. Steenkamp worked at Kalafong, she had access to a large and growing population of HIV-positive people, most of whom were very poor.

Dr. Steenkamp invited Andrew and his wife to sign up for the trial of this new drug cocktail that would fight the virus in their blood and extend their lives. They would receive four bottles of pills that had to be taken at precise times. Andrew and his wife agreed to sign up.

To be eligible for the trial, the participants had to be HIV-positive, but they also had to be healthy and not suffering from AIDS. Andrew had never been sick before, he told me, and it was only after his daughter’s illness and death that he discovered he was HIV-positive. However, almost as soon as he began taking the drugs, he felt very weak. He mentioned this to Dr. Steenkamp, but “she said it was not the tablets that made me sick, it was the HIV, and that I should keep taking the medicine.” Within a month, Andrew had to be admitted to Kalafong hospital, with vomiting, rash, fever, and painful, bleeding sores that covered his entire body.¹⁴ Andrew stopped taking the trial drugs, and his wife, who did not experience any of these symptoms, also dropped out of the trial.

Molly also lives in Atteridgeville. She is about thirty years old, and has been HIV-positive since 1995. She was being treated for tuberculosis when, she says, Dr. Steenkamp enrolled her on a clinical trial at Kalafong. The TB treatment had been working, and Molly felt well enough to go to her job as a counselor at an HIV support center, and to care for her two children. However, soon after she started taking the drugs that Dr. Steenkamp had given her, her health deteriorated. She came down with pneumonia, severe constipation, and cramps, and her throat became very sore. Most frightening of all, she said, soon after she started to take the drugs, her sight began to fade and she nearly went blind. “Dr. Steenkamp said, ‘This is caused by the HIV, and you won’t see for the rest of your life,”‘ Molly told me. But as soon as Molly stopped taking the drugs that Dr. Steenkamp had given her, her sight returned. When I met her, Molly was sitting on the edge of a bed in the TB hospital, before a plate of French fries and sausage that she seemed too weak to eat. She was extremely thin, found it difficult to talk, and would lean over at intervals and cough violently into a heap of tissue paper on the bed.

“They say it’s TB,” she said, “but I don’t believe them. The treatment was working before. I don’t know why it’s not working now.”

4.

Costa Gazi, the doctor who had first alerted me to the possible problems on the Kalafong trial, is a member of Parliament for the Pan-Africanist Congress of Azania, or PAC. The PAC split off from the African National Congress in the late 1950s, and its first leader, Robert Mangaliso Sobukwe, led the protest against the notorious Pass Laws that erupted into the Sharpeville massacre in 1960. Famous for their slogan “One Boer, One Bullet,” the PAC took a harder line against whites than the ANC did. Today, the PAC calls for racial reconciliation and for the redress of such lingering roots of inequity as corruption, crime, and poor health care and education, which it claims the ruling African National Congress is not dealing with effectively. Some PAC policies seem eccentric, such as calling for a repeal of the ANC’s ban on cigarette advertising in order to preserve the tobacco industry and advertising jobs, or for the establishment of an office for traditional African kings inside the president’s office. The PAC is today a beleaguered party, having won only three seats in the 1999 elections. Nevertheless, what remains of the PAC is very outspoken, and often controversial. In April 1999, Gazi himself accused Nkosazana Zuma, who was then health minister, of manslaughter for not providing AZT to pregnant HIV-positive women. He was later fined R1000 (about $160) for “bringing Zuma into disrepute.” He is contesting the charge.¹⁵

Confirming what Dr. Gazi had told me about what had happened at Kalafong proved extremely hard to do. He put me in touch with another PAC MP named Patricia de Lille, whom I met in Cape Town. She told me what she had heard about the Kalafong trial, and she explained that she felt monitoring procedures on clinical trials were inadequate, and that the government was wasting time with the dissidents. De Lille then referred me to a lapsed Anglican priest in Johannesburg named Johan Viljoen.

Last winter Viljoen spent five months working with the Motivation and Educational Trust, an AIDS organization that runs a support center for HIV-positive people based at Kalafong hospital. Around Christmas, a few months after he started working for the Motivation and Educational Trust, Viljoen began to hear disturbing reports from some of its clients who had been participating in the AIDS drug trial run by Dr. Steenkamp at Kalafong.

“Many of the people on the trial knew each other. I got involved when some of them started coming to me and telling me about this one that died, and then that one. People were really worried. There was this spate of four or five deaths right before Christmas.” According to what the patients told Viljoen, four women who went on the trial in October were dead by Christmas, and a further five women and one man, including Andrew and Molly, became very ill after taking the pills they were given. Then, in April, another woman died.

Viljoen gave me copies of signed testimonies that he had collected from the six patients who said they had become ill on the trial, and from a man who said his mother had died. All these patients, including Andrew and Molly, testified that they were HIV-positive; they all named Dr. Steenkamp and all said that she had put them on a clinical trial. Only one of the testimonies specifically named the American pharmaceutical company trial, however. The symptoms the patients described were very strange. “I developed severe headaches and fevers, I felt extreme stress, depression, and anger,” testified one woman. Another woman said, “I began to experience muscle cramps, spasms, and fits. I also feel stress, to such an extent I feel I might get a stroke.” Another wrote, “In February 2000, I began to have a serious rash, all over my body.”

Viljoen became an Anglican priest in the mid-1980s. At the time, South Africa was practically at war with its own people. In the townships and homelands, the anti-apartheid struggle erupted into a nearly constant series of battles between factions of black freedom fighters and the state security forces, which were using their most devious and cruel tactics to keep their grip on the country. There were raids, firebomb and tear gas attacks, torture, detentions, and murders, and this was exactly where Viljoen wanted to be. “I wanted to really live and work with people in the townships,” he told me, “and the clergy were the only white people who were allowed to do that. There was always something going on, there were riots practically every week, and all the sermons I gave were about politics and how we had to do something about the injustices of apartheid.” After the trouble began to die down, Viljoen quit the priesthood, which he found bureaucratic, and went to work with a Catholic refugee organization in Mozambique, Angola, and South Africa.

“I’m a real Afrikaner,” Viljoen told me. “My ancestors came over from Europe in the 1600s, they were in the Great Trek, the Boer War, the whole thing.” Viljoen’s father was a diplomat for the apartheid government, and the family moved around a lot, to Switzerland, Italy, Israel. While I was in South Africa, I met a number of young whites who told me how hard it was for them to understand how their parents, who might have been perfectly nice people, could have lived under apartheid without horror, and could have tolerated its injustices. I wondered how Viljoen felt about that, and whether it had influenced his decision to work with disadvantaged people. “I didn’t decide to do good works because I felt I had to make reparations or anything,” he said, “but I guess I had seen both sides of South Africa, and I wanted to work to make it a better place.”

In the fall of 1999, Viljoen met Father Barry Hughes-Gibbs, the Anglican priest who runs the Motivation and Educational Trust. “Father Barry called me up and told me that he and his wife had had a vision that I would quit my job working with refugees to go to work with him at the Motiva-tion and Educational Trust.” Viljoen is himself HIV-positive. “I guess that did influence my decision to take the job. I felt I had something to offer those people.”

There was something about Viljoen’s account that did not make sense. The patients’ complaints were so varied and so strange, and many of them did not correspond to any known side effects of anti-retroviral drugs. In retrospect, I should have wondered more about the situations they described in their testimonies. It was certainly possible that these patients were not, after all, on a trial of anti-retroviral drugs sponsored by an American company. Perhaps they were entirely mistaken about being on any sort of trial, or perhaps they were on a different trial altogether. No proof of any wrongdoing by any person involved in the trials emerged, but much remains unclear. In any case, I wanted to know whether the government, or any other authority, was doing anything to find out what had happened.

5.

I had heard that a report on the American AIDS drug trial had been drafted within the Health Ministry, but that it had not been made public. I very much wanted to speak to someone who had read it. In addition, I wanted to discuss the other controversies surrounding AIDS and its treatment in South Africa, such as AZT for pregnant women and Mbeki’s relationship with the AIDS dissidents. But one by one, most of my appointments were canceled.

One senior government scientist changed our appointment six times and then left on a trip to the United States. Many others never returned phone calls, e-mails, or faxes. Dr. Nono Simelela, the head of the AIDS directorate in the Ministry of Health, agreed to meet me in Pretoria on the Thursday after I arrived. When I turned up at her office, her assistant told me that Dr. Simelela had been called away suddenly, just fifteen minutes previously, to the Director General’s office. I was introduced instead to Cornelius Lebeloe, who is in charge of counseling, testing, and support of AIDS patients. He told me he was not allowed to talk about the AIDS dissidents, the government’s position on AZT for pregnant women, or the trial at Kalafong. When Dr. Simelela appeared an hour later, she said she was too busy to talk to me.

“How about tomorrow?” I asked.

Dr. Simelela opened her diary.

“No.”

“Saturday?”

“No.”

“Sunday?”

“No.”

“Monday?”

“No.”

“Tuesday?”

“OK, call me at ten in the morning on Tuesday.”

When I phoned Dr. Simelela the following Tuesday, I was told that she was out. Her assistant suggested I call again on Friday morning at nine. On Friday morning, Dr. Simelela was not in the office. I called several times the following week, but Dr. Simelela was either out of town, in a meeting, or otherwise unavailable. After I returned to New York I sent an e-mail, requesting an interview by phone. I have yet to receive a reply.

I also arranged to meet Dr. William Makgoba, the head of the South African Medical Research Council. Dr. Makgoba had attended the presidential AIDS panel where the AIDS dissidents had made their presentations. He was an outspoken critic of the President’s policies on HIV and of the anti-AZT policy, and he considered the AIDS dissidents “pseudo-scientists.” However, Makgoba is also an ideological ally of Mbeki’s. He recently edited a book of essays called African Renaissance,¹⁶ which includes a preface by the President. In South Africa, discussion of the anti-AZT policy and the President’s relationship with the AIDS dissidents usually involves speculation about the President’s psychology. What could he possibly be thinking? Mbeki takes the African Renaissance very seriously, and I thought Makgoba, if anyone, might have some insight into how it could be influencing his thinking on AIDS.

The African Renaissance was conceived by black intellectuals in order to supply Africa with a founding ideology that would inform development strategies that draw on African, rather than Western, models, and take account of African realities. It may, for example, provide an alternative to the kind of Western corporate exploitation that Mankahlana described in his article about AIDS in Business Day.

Observers often find the African Renaissance perplexing. How can anyone talk about an African Renaissance in the shadow of the Rwanda genocide and the wars that have broken out across nearly all of Central Africa, from Sierra Leone to Angola, to the Democratic Republic of the Congo, to Ethiopia, conflicts that seem to be pulling the rest of the continent down with them? Not to mention the floods in Mozambique, the drought in Ethiopia, the resurgence of malaria, and the AIDS epidemic?

One of Mbeki’s most famous speeches, given at the adoption of South Africa’s new constitution in May 1996, movingly addressed this paradox:

I am an African. I owe my being to the hills and the valleys, the mountains and the glades, the rivers, the deserts, the trees, the flowers, the seas and the ever-changing seasons that define the face of our native land…. I owe my being to the Khoi and the San whose desolate souls haunt the great expanses of the beautiful Cape—they who fell victim to the most merciless genocide our native land has ever seen…. I am formed of the migrants who left Europe to find a new home on our native land. Whatever their actions, they remain still part of me…. I am the grandchild of the warrior men and women that Hintsa and Sekhukhune led….

I have seen our country torn asunder as these, all of whom are my people, engaged one another in a titanic battle…. The pain of the violent conflict that the peoples of Liberia, Somalia, the Sudan, Burundi and Algeria experience is a pain I also bear. The dismal shame of poverty, suffering and human degradation of my continent is a blight that we share…. This thing that we have done today says that Africa reaffirms that she is continuing her rise from the ashes. Whatever the setbacks of the moment, nothing can stop us now!… However much we have been caught by the fashion of cynicism and loss of faith in the capacity of the people, let us say today: Nothing can stop us now!

Thus Mbeki expresses his faith in an Africa whose suffering is its strength, and is finally optimistic about a continent whose future can’t possibly be worse than its past.

In the book African Renaissance, one of the contributors, Bernard Makhosezwe Magubane, praises Barbara Tuchman’s idea, derived from William McNeill’s book Plagues and Peoples, that Europe’s Renaissance was partly made possible by the calamities of the Middle Ages such as plague, inequality, and war. Magubane speculates that Africa’s Renaissance may also emerge from Africa’s current political, ecological, and health crises.

I was particularly interested in the scientific elements of the African Renaissance movement, which emphasizes the exploration of indigenous knowledge systems, such as traditional medicine. I wondered if Dr. Makgoba knew whether any South African scientists were looking for a cure for AIDS in the herbal pharmacopeia of Africa’s indigenous medicine men and women. I was very eager to speak to Dr. Makgoba about this because, if such research were going on, it would not be the first time the government had been involved in unconventional AIDS research.

In 1997, a group of researchers at the University of Pretoria approached Mbeki, who was then deputy president under Nelson Mandela, and Nkosazana Zuma, who was health minister at the time. The researchers claimed to have a cure for AIDS, which they called Virodene. Zuma invited them to address the Cabinet on their research, a highly unusual move in any country. Virodene consisted of an impure solution of dimethylformamide, an industrial chemical used in dry cleaning, among other things. It is very unlikely to be in any way beneficial to AIDS patients, and may well be harmful, since it is known to cause liver damage and skin rashes and may even activate HIV, possibly accelerating the course of AIDS.¹⁷

Clinical trials of Virodene on HIV-positive people were carried out without the authorization of the Medicines Control Council, the state body that regulates research and approval of drugs,¹⁸ and Zuma, Mbeki, and the Virodene researchers were criticized for their behavior concerning the drug by numerous South African doctors and scientists and by the South African Medical Research Council, the Democratic Party, and the Medicines Control Council.¹⁹ In an open letter in the South African press, Mbeki wrote an indignant defense: “How alien these goings-on seem to be to the noble pursuits of medical research! In our strange world, those who seek the good for all humanity have become the villains of our time.” He defended his decision to try to “facilitate the carrying out of the critical clinical trials that would test the efficacy of Virodene.”²⁰ Shortly after the Medicines Control Council tried to block further trials of Virodene in human subjects, its chairman and several other officials were fired.

Dubious AIDS cures are nothing new in Africa, or anywhere else, but the strange thing about Virodene was that it seemed to attract interest in such high places. The owners of the company that manufactured Virodene, called CPT, were engaged in a court battle over ownership of the company, and during the proceedings, a memorandum from the company surfaced, which stated that “the ANC is to receive six percent shares in the CPT.”²¹ Zuma and Mbeki denied any knowledge of this document, and there is no evidence that they had been aware of the offer. The Virodene story made headlines in South Africa and elsewhere in 1998, but since then the furor has subsided, and no one I spoke to in South Africa seemed to know whether any further research on it is being conducted.

Virodene was not an indigenous African cure for AIDS, but it did emerge from an African university, and I wondered whether Mbeki, who was so hostile to AIDS drugs made by Western pharmaceutical companies, might not have been interested in it simply because he wanted to give support to drugs developed in Africa.

The Virodene episode, Mbeki’s skepticism of Western approaches to the AIDS epidemic, and his support for the African Renaissance reminded me of an essay I had read in The Sunday Times of South Africa by Mark Gevisser, Thabo Mbeki’s biographer.²² Gevisser describes a correspondence between Mbeki and his friend Rhianon Gooding that took place when Mbeki was studying in Moscow in 1969. In his letters, Mbeki discusses his admiration for Coriolanus, who fought to save Rome, but was too high-minded to live in it, and ended up making war on his own people. Gevisser does not quote Coriolanus’ most famous lines from the play, but I immediately thought of them as I read the essay. When the Senate threatens to banish Coriolanus from Rome because he refuses to accept the mantle of a Roman hero, Coriolanus replies, “I banish you!… There is a world elsewhere.” Like Coriolanus, Mbeki has stubbornly decided to debate AIDS on his own terms, whether by defending the Virodene researchers or by denying fifteen years of research on HIV and AIDS. As he does so, his pride may well destroy his own people.

Dr. Makgoba arrived an hour late for our meeting, and had to leave almost immediately to catch a plane. As I waited in his office, his secretary told me that she had reminded him of our meeting that very morning, and he had said he would be able to make it. But then he had gone to see his dietician, and as far as she knew, he had been detained there. This seemed odd. Why suddenly consult a dietitian? And then be detained there? I began to feel as though I had come to a land in a fairy tale, where everybody is evasive and ignores appointments.

When Dr. Makgoba finally appeared, he didn’t want to talk about the AIDS dissidents, the African Renaissance, or Coriolanus. He did tell me that research on traditional African medicine for AIDS was underway in South Africa, but when I asked for details, he said he didn’t want to talk about it. After fifteen minutes he asked me to leave.

6.

Back in Johannesburg, I finally found someone who would talk to me about the Kalafong trial. Professor Geoffrey Falkson is a retired oncologist, and he also runs the Ethics Committee at the University of Pretoria, which approved Dr. Steenkamp’s application to conduct the clinical trial on behalf of the American pharmaceutical company. As we sat in Falkson’s small, sunny office in the academic hospital he said, in answer to my questions, that five patients out of forty-two had died on the trial at Kalafong. “Isn’t that rather a lot?” I asked.

“They had full-blown AIDS!” he said.

“No, they didn’t.”

He took the protocol book off his shelf and turned to the page where the inclusion criteria for the trial were listed. Clearly, patients with AIDS were not allowed on the trial.

Professor Falkson seemed confused about many of the details of the trial, and he didn’t seem to appreciate the gravity of what he was telling me had happened, that five healthy HIV-positive people suddenly died after receiving medications that were supposed to extend their lives. He talked about the difficulty of conducting trials in South Africa, the high ethical standards that prevail there, the selflessness of investigators like Dr. Steenkamp. Finally, he wrote down a web address for me, where, it turned out, some of his oil paintings could be viewed.

Finally I asked Dr. Falkson to tell me who was ultimately responsible for examining and caring for people like Andrew and Molly, who might have been harmed on a clinical trial, and for all the people who died.

“Clindipharm are the ones to talk to about that,” he said. Clindipharm is a private company based in Pretoria that serves as an intermediary between pharmaceutical companies wishing to conduct clinical trials of their drugs using South African patients and South African doctors and scientists wishing to carry out the work itself. Clindipharm packages the drugs, distributes them to the doctors, and manages the data that come in from the laboratories and doctors’ offices. The medical director of Clindipharm refused to speak to me, but he did tell me that all adverse events on clinical trials are reported immediately to the Medicines Control Council, at which point they cease to be Clindipharm’s responsibility.

During my last week in Johannesburg, I tried without success to reach Dr. Helen Rees, the new head of the Medicines Control Council. By now, of course, I was not surprised when Dr. Rees did not return my calls. However, just as I was leaving South Africa, I spotted Dr. Rees in the departure lounge of the airport in Johannesburg.

“You have your facts wrong,” she said, when I told her I had heard that five people died on the Kalafong trial.

“Well, how many people did die at Kalafong, then?” She did not remember. I asked Dr. Rees who was responsible for following up adverse events on clinical trials, and examining patients like Molly and Andrew who might have been harmed by experimental drugs.

“We refer the matter to the local Ethics Committee. We take these things very seriously,” she said.

I said I thought that sounded strange, because Professor Falkson, the head of the Ethics Committee at the University of Pretoria, had told me that Clindipharm was responsible for following up adverse events. Clindipharm, in turn, had told me that they referred all reports of adverse events to the Medicines Control Council, and now the head of the Medicines Control Council was telling me she refers them back to the Ethics Committee. The responsibility seemed to have gone full circle.

Dr. Rees told me that new legislation governing the ethics of clinical trials was now in draft form, and had been under negotiation for more than two years. It would be presented to Parliament soon, she said. I wondered whether the legislation had not come too late for the patients at Kalafong. Clearly it would be important to have such legislation in place before clinical trials of drugs that the government itself alleges can be toxic should be allowed to proceed. As it turns out, the ethical guidelines currently in force were drafted in the 1960s, a time when high ethical standards did not prevail in South Africa. This only deepened my suspicion that the Ministry of Health might have been distracted by the AIDS dissidents and was failing to expedite far more important issues.

On the airplane, I found myself sitting next to a young white South African who worked as a salesman for a Pretoria company that sold CAT scanning machines. He followed the controversies over AIDS pretty closely in the South African newspapers. “It’s all political,” he said. “Everything is political in South Africa.”

I told the CAT scanner salesman about my baffling interview with Dr. Rees, and the extreme evasiveness of so many people in government and other scientific institutions. “You see,” he said, “these people aren’t used to journalists asking questions. During the struggle, they only had to speak to reporters on their own side. Now when a reporter challenges them they think ‘she’s on the wrong side’ and they’ll do anything to avoid you.” I realized that so much of my information about the trial, and about AIDS in South Africa in general, had come from one side only, that of activists like Gazi and de Lille in the PAC, and the lapsed priest, Viljoen. This was why I had not been able, in the three weeks I was in South Africa, to figure out with any certainty what had happened at Kalafong. I had been trapped in a hall of mirrors, and many of them reflected only a particular political agenda.

7.

When I returned to New York, I called the American pharmaceutical company that had sponsored the clinical trial in South Africa and asked them to tell me how many patients died at the Kalafong site. I was surprised to learn that, contrary to what I had heard in South Africa, only one patient on the trial had died at Kalafong. Viljoen had given me the names of the patients whose families said they had died after being enrolled on the trial by Dr. Steenkamp. I called Dr. Steenkamp in South Africa, and she told me that none of these patients were, in fact, on the trial. She would say nothing about the patients who were sick but still alive because, she said, that would violate their privacy. When I told Dr. Steenkamp that all of these patients seemed to think they were on a trial, according to signed testimonies given to me by Viljoen, and all of them claimed to have come regularly to receive drugs from her, Dr. Steenkamp told me she had certainly been treating some of those patients, but she would not say whether they had been on a trial. What on earth was going on?

My first thought was that some of the patients might have been screened for the trial, but because they were already sick with AIDS, they were not eligible. Dr. Steenkamp may have given them some medication, but the patients may have misunderstood and thought they were actually on the trial. Perhaps these people became much sicker right after their appointment with Dr. Steenkamp, simply because the disease was taking its course. When they died, their families blamed the doctor.

The HIV/AIDS epidemic came late to South Africa, but since 1993, the virus has been spreading very fast. Today, 15 percent of South African adults are HIV-positive, but most people were infected recently, in the last seven years. People may live perfectly healthy lives with HIV for a decade, so the great wave of death from AIDS in South Africa is now beginning to break. Perhaps these five deaths were an early swell of this great wave. Perhaps five people died of AIDS and another six got sick. Could it be that the sick ones and the relatives of the dead ones could not accept what was happening, and were looking for a culprit? Perhaps whispers circulated in the townships about a doctor at Kalafong. Hysteria may have ensued, perhaps fueled by reports of the controversy in the President’s office over whether AZT and other anti-retroviral drugs were part of a Western plot and might even be the cause of AIDS. In the eyes of the surviving patients and the families of the dead, Dr. Steenkamp may have been seen as some sort of witch.

But details of the story that just didn’t fit together still perplexed me. Why would six patients and the families of five others think they were all on a clinical trial if they had not been? Why did Professor Falkson, who was admittedly weak on details, tell me that five patients had died on the Kalafong trial if in fact there was only one death there? Why did one of the patients tell Viljoen that after she and the others had received their trial drugs from Dr. Steenkamp, they all sat around together in the lunchroom at the Motivation and Educational Trust, unwrapping their parcels of pills, only to discover that not everybody got the same kinds of pills? Some people got two bottles, some four, and the pills looked different. The American trial was placebo-controlled and blinded, which means everybody should have received exactly the same thing. Why did one of the patients who received drugs from Dr. Steenkamp write in her testimony, “[Steenkamp]…told me not to talk to anybody else about [the trial] because it was our secret”? When I called Dr. Steenkamp from New York, she insisted that she had not been conducting any other clinical trials with AIDS patients at the time she was working on the American drug trial.

Why did the patients who became ill report such strange symptoms? When Andrew described his symptoms to me, they sounded a lot like Stevens-Johnson syndrome, a potentially fatal, but rare, side effect of one of the anti-retroviral drugs on the trial sponsored by the American pharmaceutical company. But when I spoke to the pharmaceutical company representative, he told me that no cases of Stevens-Johnson syndrome at the Kalafong site had been reported to him. If any cases had occurred there, he assured me he would have known. So if Andrew’s symp-toms were not drug-associated Stevens- Johnson syndrome, what were they?

Molly’s testimony said she was put on a “drug trial,” but she had tuberculosis, which would have excluded her from the American trial. Why, after Molly got sick, was she prevented from looking at her own medical file by the authorities at Kalafong? A friend of Viljoen’s had sneaked into the hospital disguised as a nun and had stolen the file, but when it was opened, Viljoen told me, the most recent three months of notes were missing. And why did Molly say she went temporarily blind? I have spoken to a number of AIDS researchers who have long experience with anti-retroviral drugs, and temporary blindness is not a known side effect of any of them. Blindness does occur in AIDS patients, but it does not get better.

Clinical trials are often surrounded by secrecy. South African politics and evasion obscure matters even further. In early June, I was leafing through old copies of The Lancet in the library and I came across an editorial criticizing Mbeki’s anti-AZT policy.²³ “Is there some other agenda,” the author speculated, “such as the promotion of locally developed drugs?” Perhaps South Africa’s paranoia was beginning to affect me too, but I thought of the unauthorized clinical trials of Virodene, and of Mbeki’s interest in the African Renaissance and in finding African solutions to African problems. I also thought of Dr. Makgoba’s reluctance to tell me about South African research into traditional African medicine for AIDS. I began to wonder whether some accident might not have occurred at Kalafong. This seemed unlikely; but what did happen remains unexplained.

8.

President Mbeki arrived in the United States on the same day I did. On Tuesday, May 23, he was interviewed on The NewsHour with Jim Lehrer, and he was asked specifically about his controversial AIDS policies. His replies were a series of evasions. He claimed that he had never said that HIV was not the cause of AIDS, but he did not deny that he had questioned the link between them. Nor did he explain why, if he did not question this link, he had invited Duesberg and his followers to present their views to the presidential AIDS panel. When he was asked why he refused to make AZT available in public maternity wards for the prevention of HIV transmission from mother to newborn child, he answered that the state could not afford to make anti-retroviral drugs available for life to all HIV-positive people in South Africa. But he was not answering the question that had been put to him. He had not been asked why he didn’t provide all HIV-positive South Africans with anti-retroviral therapy for life. He had been asked why he didn’t provide it only to HIV-positive women for a month, or perhaps only a week, around the time they give birth. This would cost about $50 million a year, which the Health Ministry could well afford, especially in view of the fact that it will cost many times more to treat the children who might have been spared HIV infection when they eventually come down with AIDS.

Nevertheless, Mbeki and his government continue to argue that providing these women with anti-retroviral therapy is too expensive and the drugs are too toxic. His critics, meanwhile, continue to argue that the drugs are not too expensive, and that their prices are falling anyway, and that they are very unlikely to be toxic in the short doses used to prevent infection during childbirth.

This issue may be clarified at the upcoming Thirteenth International AIDS Conference in Durban in early July. A group of researchers working at Chris Hani-Baragwanath Hospital in Soweto have been testing a cheaper anti-retroviral drug called nevirapine, to see how well it protects babies born to HIV-positive women from HIV. There is already evidence that it does.²⁴ The government has quietly approved nevirapine pilot projects in public maternity wards, and there is hope that the results of the Baragwanath trials will be encouraging enough for these projects to be approved by the Medicines Control Council.

The science and politics of AIDS can seem complicated, and even illusory, to those who aren’t familiar with them. Like some mystical Hebrew text, it may seem as though they can be interpreted in many different ways. As I watched Mbeki on television dodging every direct question, I felt that he wasn’t being straight with his American audience, or with his own people. He seemed to be hiding something.

The anti-apartheid struggle never quite erupted into a real war, but there is nevertheless a vaguely postwar atmosphere in South Africa, in the self-imposed curfew, the corruption and crime, the drug shortages, the shifty-eyed officials, and in the sense that something terrible has happened there, in a nation haunted by death and ruined lives, with a visionary ruler who has not adequately confronted the most deadly threat facing his country.