Sizwe's Test: A Young Man's Journey Through Africa's AIDS Epidemic Read online

  The South African president’s heterodox position on AIDS has many roots. One of them, ironically, is his perceptiveness. Any serious student of the AIDS epidemic is compelled to answer a difficult question: Why Africa? Why has the epidemic been uniquely terrible here? The answer Mbeki found in established social and medical science was, simply, that Africans had too much sex, that they could not control their carnal appetites, even when their libidos were literally killing them. That is the assumption, Mbeki thought, underlying the hegemonic idea that the answer to the AIDS epidemic was sexual behavior modification. It suggested that the epidemic was uniquely terrible here because sexual appetite was uniquely voracious here, that taming the epidemic required taming African men.

  Established medical science, Mbeki believed, had been blinded by the racism of its practitioners. It had suspended a piece of knowledge that ought to be workaday for epidemiologists: that among the cofactors of the vast majority of epidemics in history is poverty, that any explanation for why AIDS has been so ghastly here must surely absorb the fact that Africa is underdeveloped and poor. Indeed, the diseases of poverty, he argued, incubated by malnourished bodies, endemic parasites, lack of fresh water, and wretched working lives, have been legion in Africa for generations. Surely AIDS is one of them.

  It was in this state of disillusionment and anger that Mbeki became aware of groups of dissident scientists, long ago dismissed by orthodox science, who questioned whether HIV was the primary cause of the AIDS epidemic. By 2000, Mbeki firmly believed these outliers and supported them. They were not so much dissidents, he wrote in a letter that was to become infamous, as heretics, questioners of established dogma. Stitched together with poor science and racist prejudice, this pernicious dogma’s centerpiece was that sexually transmitted HIV was the sole cause of the African AIDS epidemic.

  And the greatest champion of this dogma, Mbeki believed, was the immensely powerful pharmaceutical industry, its research budgets larger than those of most developing nations, its marketers scouring the globe for consumers of the antiretroviral medicines it manufactured. The received wisdom that Africa’s epidemic of immunodeficiency was caused by HIV, Mbeki believed, was sustained by one of the most powerful commercial interests on the planet. Antiretrovirals were toxins quite literally forced down Africa’s throat.

  So what Hermann Reuter regarded as the most important health-care intervention in fifty years, Mbeki regarded as a package of racial and pharmacological poison. Hermann is an African-born white Marxist, Mbeki a black third-world nationalist. In another era, they would have been allies.

  MBEKI’S IDEAS ON AIDS were always complicated and never clearly articulated. By the time they filtered down to provincial ANC strongholds such as Eastern Cape, they had become a cocktail of nativism, ersatz epidemiology, and anti-imperialism: the drugs are toxic; the West is dumping poisons on Africa; the problem is poverty and ARVs cannot help someone with an empty stomach.

  MSF was invited to Eastern Cape by one section of a fractious and ambivalent health department. When Hermann met with the provincial health minister, Dr. Bevan Goqwana, in May 2003, the minister appeared to discover only there and then that MSF was in his province to administer ARV treatment. Irritated and surprised, he told Hermann that the drug program would have to be put on hold. When Hermann replied that he would continue to provide ARV treatment with or without the minister’s consent, Goqwana lost his temper. He compared Hermann’s threat of defiance with the warmongering of Angola’s Jonas Savimbi, and so implied that he would fight him as a patriotic soldier fights a counterrevolutionary.

  If the minister’s outburst was a little mad, it nonetheless captures the besieged and aggressive nativism that greeted the arrival of AIDS medicine in South Africa: ARVs were cloaked in suspicion and conspiracy; they had been brought to our shores by people bent on deceiving us, people bent on robbing us of something.

  By October 2005, much had changed. Two years earlier, Mbeki had capitulated to a rebellion in his cabinet and had agreed to a universal ARV rollout. It was an unsettling spectacle: a reluctant administration, defeated by a broad range of political opponents inside and outside the ANC, begrudgingly rolling out the most ambitious health program in the country’s history. But it did indeed begin to happen. By the time I arrived in Lusikisiki, about eighty thousand people had been put onto treatment at public health facilities throughout South Africa.

  MSF’s country staff watched the government’s rollout proceed, and they were dismayed by what they saw. In district after district, hospitals, rather than clinics, were accredited to administer ARV treatment. Bottlenecks developed almost immediately, and thousands of sick people were put on waiting lists. Thousands of others would never turn up at all. Their local clinics, often within walking distance, remained neglected, understaffed, and without drugs.

  For MSF, what they saw only confirmed what they had always believed: that a plague as pervasive as southern Africa’s AIDS epidemic would either be fought by nurses and laypeople or not at all.

  The South African government was getting it wrong, MSF staff believed, not simply because of its president’s and health minister’s famous skepticism about ARV medicine. The problem lay much deeper. Ironically, South Africa’s health administrators, maniacally vigilant about warding off malignant Western influences, appeared to be trapped in a mentality bequeathed to them by generations of white minority rule.

  During the apartheid years, South Africa built a high-technology, hospital-based health system, neglecting preventative medicine. In part, this was symptomatic of a racist indifference to the health of black people. It was also because South Africa was internationally isolated, and developing high-technological competence became a mantra of pride and survival.

  When South Africans voted in the country’s first democratic election in 1994, they swept the African National Congress (ANC), the previously exiled liberation movement and the party of Nelson Mandela, to power. The new ANC government spoke a great deal about rejuvenating primary health care. It also made some progress. Yet the AIDS epidemic, for Hermann, had shown the limits to its commitment. Faced with a great plague, one that could only be fought beyond the hospitals at the grass roots, the government’s feet had gone cold. Despite itself, it could not shake off an old white prejudice: only hospitals, machines, and specialists deliver decent medicine; medicine for the poor is poor medicine.

  A battle of ideas was thus in progress. MSF needed to show that in districts where the national government’s rollout model was implemented, people died in numbers awaiting treatment; that in Lusikisiki, those who needed ARVs sought them and got them, waiting lists were kept always at zero, and nurses turned nobody away. The question of information, and how to disseminate it, was delicately political. The presentation of success was as important as success itself.

  WHEN HERMANN REUTER came to Lusikisiki, the primary health-care system that he was envisioning would fight a great plague was profoundly unaware of his plans. Of Lusikisiki’s twelve clinics, two had reliable electricity supply, one had running water or a phone, and none a fax machine. Few of the medicines on South Africa’s essential drug list had ever found their way to the district’s clinic shelves, and those that had were there only sporadically. Less than four in ten nursing posts were filled.

  Per capita, the district had fourteen times more people per doctor than the national average, and in that sense, Hermann was surely right: either Lusikisiki’s battered clinics and overworked staff would fight the epidemic, or no one would.

  “During my first week here,” Hermann told me, “I went to each clinic. The nurses’ first question: ‘Are you a doctor?’”

  “‘Yes, I am a doctor.’

  “Big welcome dance. First time they have seen a doctor coming to the clinic for five years. Lots of excitement. Until I start talking about HIV. They say, no, they don’t think HIV is a problem in the community. They don’t treat anyone with HIV. Ja, they went to a funeral and someone said the person died of HI
V, but we don’t know.

  “We start testing people in the clinics. Initially, I did most of the tests with the nurses. Positive, positive, positive, one after the other. It was a big eye-opener for the nurses.”

  I was incredulous. By early 2003, HIV was comfortably the leading cause of death in Lusikisiki. “Are you saying this is how nurses discovered the epidemic?” I ask.

  “Yes.”

  “It’s extraordinary that they weren’t aware.”

  “I don’t know. Perhaps they were aware. But it wasn’t their responsibility. It wasn’t for the clinics. Ja, there was home-based care, but it wasn’t for nurses, it was the NGOs. Very sick people did not come to clinics. They went to hospital and died there.”

  Yet even at Saint Elizabeth’s, the regional hospital at the northern end of Lusikisiki’s town center, there was little talk of AIDS before MSF arrived. I interviewed a staff nurse called Zama, who worked in the hospital’s female medical ward in 2003, which by then would probably have hosted at least one AIDS death every single day.

  “People were dying of TB, cardiac failure, pneumonia, some of meningitis, some of diabetes,” she told me. “We did not differentiate. We did not say, pneumonia is maybe an opportunistic infection of AIDS, and diabetes isn’t. It was just: this one died of this, that one died of that.”

  “When did you first start thinking of these things as opportunistic infections associated with AIDS?” I asked.

  “When MSF came and gave a seminar. It changed everything. Suddenly, I was looking at something new. Before then, if you knew that a patient in the ward was HIV-positive you had to keep it a secret; it had to be highly confidential. It was dangerous to ask.”

  It is an extraordinary tale. In a hospital ward, the leading cause of death among patients is banished from speech and from thought. What was this denial about?

  It is perhaps trite to point out that nurses are both medical personnel and people. To what extent did they simply carry into the wards a sense of scandal from the outside? How much of their silence, on the other hand, was the specific silence of nurses? Staffing a hospital ward in the thick of a seemingly incurable epidemic is a grim business. If the people being admitted are destined to waste away and die, and if they keep coming, day in and day out, they become emblems of unspeakable hollowness.

  “All over the country,” Hermann told me, “AIDS demotivated health workers. Opportunistic infections were treated as acute illnesses; people were quickly discharged to make space for others. Workload increased. Turnover was so quick. Hospital stays got shorter. So much nurse work is admin work. The higher the turnover, the more admin. Patients in hospitals became sicker and sicker, so the workload got even harder. Many patients had neurological problems, confusion: you would get people running out of the wards. There was also lots of diarrhea, lots of soiled linen. And then there was the increased rate of death in the wards. If the person in the bed is just going to die…” He allows an elaborate shrug to finish his sentence. “HIV was a nightmare. Health workers hated it.”

  In some parts of the country, hospital managers would literally police their perimeters to keep the chronically ill out. Hermann has a story about this that remains vivid in my mind. It comes from the early days of MSF’s Khayelitsha project, 1999 or 2000, and concerns GF Jooste, the large Cape Town hospital that serves the working-class districts and shack settlements of the Cape Flats. Jooste was critical to the success of MSF’s Khayelitsha project. It was the institution to which MSF referred patients who required hospital care; it thus had to have a measure of competence in treating people seriously ill with AIDS.

  “I would send people there and they would start crying,” Hermann recalls.

  “They would say, ‘Send me anywhere except there.’

  “I say: ‘Why?’

  “They say, ‘People die there.’

  “That hospital was overcrowded. It was mainly geared toward surgical patients because of that area. You know, knives and guns and lots of blood. You go to that hospital and you have to go through the security guards. On a Friday night that place smells of alcohol and blood and you need to bleed to be let in there.

  “Sometimes I went there on weekends with Treatment Action Campaign people who fell sick, and the guards outside looked at us and said, ‘This one is not sick: she can’t come in.’

  “I said, ‘No, she is very sick; she has meningitis.’

  “They said, ‘What is that? I can see she has HIV. Go home.’

  “That was the security guards. I’d tell them I’m a doctor, and that would get me past security. The next line was the nurses. They would say, ‘No, this is a chronic patient, take her home.’

  “That was the attitude throughout South Africa: we cannot deal with HIV, especially not on a Friday night.”

  THERE ARE SEVERAL ways to describe what Hermann did when he came to Lusikisiki. I’m not sure which is best. One is to say that he arrived in town clutching the pills themselves, the ARVs, as one clutches a cross or a staff. One can quibble over names and words, but they are to be invested with a force that amounts to magic. For the pills offer nothing less than to halt a deluge of dying. They dare people to drag the disease from its hidden corners, to name it and talk openly of it, and to plan a battle against it, all on the grounds that it need no longer kill.

  Hermann came to town promising that in his bag was a force that would confound death. It is the excitement of that promise that conjures out of very little a working health-care system. The pills are billed as the protagonist in a great drama. And so people begin to rally behind the pills. Clinic staff once resigned to the fate that the phone at the Mthatha medicine depot goes unanswered now demand a response. They need the TB drugs, the meningitis drugs, the antifungal drugs on their shelves here and now, because without these drugs, the magic ARV pills cannot fight death. At the local hospital, the wasted patient soiled in her own excrement is no longer a soon-to-be-corpse; she is a project to get right, another piece of the magic, a human being who will one day walk on her own two feet. The management positions in the district that have been vacant for two years are filled because now there is work to do, and if it is not done, the pills will not defeat death.

  That the people of Lusikisiki too must join the drama of course goes without saying. The clinic is no longer a place for old women’s tired joints and young children’s upset stomachs. It is the front line in life’s army, the place one seeks refuge from death. With the pills, HIV in the family must no longer be a source of shame. Those who have eluded death must hold their pills up high and celebrate their lives. In every village, those who are alive because of the pills must speak of them, demand that they keep coming, demand that the clinics and the hospitals be working so that the pills can do their work.

  It is necessary that all these things happen at once. If the nurses in the clinics are buoyed, but the people stay away and die in their homes, the magic promised by the pills stays dormant. If the people line up outside the clinic in scores, but there is insufficient staff to see them all, they will begin to stay away and die at home. And if there is enough staff, and the people come, but the medicine depot does not deliver the drugs to the shelves, the magic will quickly vanish. Or perhaps the clinics are working well, so well that the sick descend upon them like never before. And so the clinics refer the gravely ill among their patients to the hospital. But the hospital has not enough beds for the influx, and people die at home.

  The magic must light up the whole system at once. All is connected. One dark corner can short-circuit the whole.

  THERE IS ANOTHER way to describe what Hermann did. Using a mixture of charisma and sheer slog, he built a social movement and stationed its members in the clinics. A cohort of adherence counselors, recruited and trained by Hermann and put on MSF’s payroll, did the lion’s share of the AIDS work in the clinics. They performed voluntary counseling and testing, prepared patients for treatment, established support groups for antiretroviral users, monitored the adherence of
antiretroviral users to their treatment, and collected and collated data. They were as much community activists as health workers, visiting families who had thrown the HIV-positive out of their homes, and staffing the mobile testing units like the one that so unnerved Sizwe in Ithanga.

  Hermann recruited six people as pharmacist assistants. Their task was to dispense medicines, monitor low stocks, and place persistent and unrelenting pressure upstream to supply the district’s burgeoning need for medicines.

  While MSF was planning its Lusikisiki project, Hermann requested that the Treatment Action Campaign open a branch in the town. They did so. Hermann envisioned the branch becoming the central pillar of a popular social movement in Lusikisiki. In the end, it turned out to be a mixture of strong and weak. Around the center of town and in some of the larger villages, TAC members donned their signature HIV-positive t-shirts, giving both the epidemic and its treatment a bold and visible face. TAC activists also worked very effectively among ARV users in the clinic-based support groups, getting users themselves to trace people who had not turned up for their pills, moving into villages where users were being shunned or victimized, and making users literate in the medicines they were taking and in the politics of health care more generally.

  But the organization was weaker than Hermann would have liked. Building a lasting social movement in a deep rural setting has never been an easy task. The most talented of the young people Hermann attracted became adherence counselors and pharmacist assistants, thus robbing TAC of the cream of local talent. And so in villages such as Ithanga, few, if anyone, had heard of TAC. Sizwe knew of the adherence counselors from the day they came to test the people, and from the local clinic. Of TAC he knew nothing.