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The Mystery of AIDS in South Africa

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.

  1. 7

    Triangle Pharmaceuticals Announces Clinical Hold on Study FTC-302,” PRNewswire, April 7, 2000.

  2. 8

    See “AIDS Trial Woman Dies,” The Citizen, April 24, 2000.

  3. 9

    A Duty of Care Means Good Money Shouldn’t Lie Idle,” Financial Mail, March 17, 2000; Ivor Powell, “Uproar over AIDS Council,” Mail and Guardian, January 28, 2000; Judith Soal, “HIV Patient Was Denied Treatment,” Cape Times, May 11, 2000; N. Lamati, testimony given at the Health Portfolio Committee hearings, Parliament of South Africa, Cape Town, May 10, 2000; see also www.tac.org.za/parlhear.txt.

  4. 10

    This gap has actually widened since the African National Congress came to power in 1994. The wealth gap between blacks and whites has narrowed, but inequalities within the black population have widened considerably. (R.W. Johnson, Helen Suzman Foundation, unpublished.)

  5. 11

    During the 1980s and 1990s, the World Bank established the Structural Adjustment Program, which provided loans to the poorest countries that had such bad credit they were unable to obtain loans from other banks. One of the conditions for receiving a structural adjustment loan was that countries had to reduce public spending. For the Zimbabwe government, this meant cutting the education budget and laying off teachers.

  6. 12

    HIV testing may not be conducted in South Africa, or in most other countries, without consent, or, in the case of a child, without the consent of the parents. Andrew maintains that neither he nor his wife gave permission for the child to be tested, and if this is true, then the hospital committed a serious ethical violation.

  7. 13

    The names of the trial participants and Dr. Steenkamp have been changed.

  8. 14

    At the beginning of the trial Andrew had been given a form with a telephone number on it to call if he wished to know his rights as a participant on the trial. The phone number was in fact a fax number, of little use to someone feeling sick in the middle of an impoverished squatter camp.

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