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

  “I don’t know,” he shrugged, head down, unwilling to interrupt the insect hunt.

  “It is the sort of question,” I said neutrally, “to which one usually expects a reasonably straightforward answer.”

  He smiled to himself and kept looking for grasshoppers or locusts.

  “I used to live here,” he said finally, “but it is not clear if it is still mine anymore. I moved to a house in the middle of town, but I didn’t want to give this one up. I had an idea to make it into a youth center. I got some other people to live here for me so that it wouldn’t stand empty in the meantime. Then the lady who owns the house heard that I wasn’t living here anymore and she thought it was standing empty, and she got very, very cross. There are still some of my possessions in there and I don’t know whether I’ll ever be able to get them.”

  He shrugged and laughed, as if to say: “I am eccentric: see how even the simple things I make difficult.”

  He is in his late thirties, on his youthful face a thin beard that suggests either country doctor or Guevaran revolutionary. His hair is light brown and thick and stands up straight on his head. “It is usually much longer than this,” he tells me. “What you are seeing is unusual.” He has a thick German accent; he is a son of old South West African stock.

  Properly told, the story of his presence here begins nine years ago, in July 1996, half a world away, in Vancouver, Canada. There, AIDS clinician David Ho and colleagues made what would soon be recognized as the most significant announcement in the brief history of AIDS medicine. An antiretroviral treatment program dubbed “highly active antiretroviral therapy” (HAART), a cocktail of three classes of drugs taken twice daily, had been shown in a series of clinical trials to halt the replication of the HIV virus. By late 1996, reports in the New York Times and Sydney Morning Herald were talking of the Lazarus effect, of the mortally ill rising from their deathbeds, putting on their coats and ties, and reporting for work. The most optimistic virologists hoped aloud that halting the replication of the virus would kill it, that HAART was a cure for AIDS.

  By late 1997, it was clear that the news was not quite as good as that. In the vast majority of patients, the virus remained latent for as long as twice-daily treatment continued. Going off the drugs for a period of time was certain to court a return of serious illness. The drugs themselves were pretty toxic. Most of the side effects were confined to the first months of treatment, but for a minority the illnesses associated with taking the drugs were chronic or episodic and required permanent management. And those on ARVs still remained far more vulnerable to infectious disease than HIV-negative people. The lives of people on treatment would thus be a good deal more fragile and probably shorter than those of their peers.

  Nonetheless, a large cohort of people who in mid-1996 had been destined to die were back at work and living normal lives by January of the following year. In cities such as Sydney, San Francisco, and New York, where the most visible gay populations on earth had been decimated, scores of young men faced the bewildering dilemma of what to do with the futures they assumed had been stolen from them. The celebrated gay writer Edmund White wrote in a late-1990s essay of the resumption of New York dinner parties after a decade-long interval; for dessert, the assembled guests would communally swallow their cocktail of pills.

  Médecins Sans Frontières began its South African antiretroviral work in 1999. By then, middle-class people throughout the world who contracted AIDS could expect to begin a lifelong drug regimen as a matter of course. The largest unresolved matter about AIDS treatment had shifted to the heartland of the epidemic: sub-Saharan Africa. The question was whether HAART could be delivered to poor people in underdeveloped states. In fact, there were three questions. The first was cost. A global campaign to set aside patents on antiretroviral drugs, thus making them affordable to the health departments of developing countries, was under way. This campaign achieved a significant victory less than two years after MSF’s arrival in South Africa: in February 2001 an Indian manufacturer offered to sell generic, unpatented HAART drugs for 350 U.S. dollars per person per year.

  There were two further questions: one was whether third-world health departments had the capacity to manage and deliver treatment in the context of a widespread plague. A middle-class New Yorker who falls ill can expect to be attended to by a personal physician, and a battery of nutritionists. He also shares his city with fine virologists and infectious disease specialists, and several tertiary health-care institutions built to study and manage chronic illness. A person who falls ill with AIDS in a poor African village is more likely to be attended to by a single nurse. She is treating dozens of cases every day, trying desperately to manage her workload. If one of her patients should fall ill with TB or pneumonia, will the drugs he needs find their way to the nurse’s shelves? And if he requires intensive care, is there a hospital close by, one not so swamped by the epidemic’s casualties that it has a bed for him to lie in and the spirit and the means to care for him?

  A third question concerned poor people themselves and whether they would adhere to lifelong treatment. A notorious comment made in 2001 by the head of the U.S. Agency for International Development, Andrew Natsios, became the abiding emblem of the debate. He cautioned against investing too much in a therapy that required taking pills at strict twelve-hour intervals. In Africa, he said, “people do not know what watches and clocks are. They do not use Western means for telling time. They use the sun.”

  In 1999, when MSF began its South African work, it was entirely unknown whether the country’s public health system could deliver ARV medicine to the poor. Treatment had been administered by private physicians to middle-class people on health insurance, and in clinical trials at academic hospitals. Hermann scoffs when I mention clinical trials.

  “You have four or five doctors,” he says, “all of them with highly specialized training, hovering around one patient. Four or five doctors to a patient: how can you deal with an epidemic that way? How many doctors will you need to put a million people on treatment?”

  When MSF came to South Africa to begin an antiretroviral pilot project, it went to the only South African province that would cooperate with it: Western Cape. It chose as its initial site Khayelitsha, a poor and crowded ghetto of more than half a million people on the outskirts of Cape Town. One in three of its adult residents was unemployed, and one in five was HIV-positive. Hermann was among those who pioneered the project. Its aim was to show that it was possible to deliver quality ARV treatment en masse to the poor.

  The underlying approach of the Khayelitsha project was really a leap of faith, a piece of outcome-based reasoning. The epidemic was pervasive. Millions of its victims were poor and without access to decent health care. Doctors, nurses, technology, and infrastructure were all scarce where they lived. If AIDS medicine were to remain the preserve of specialists at academic hospitals, it would never reach poor people; the overwhelming majority of the epidemic’s victims would simply die.

  So MSF and like-minded organizations stood up and declared, by simple fiat, that it was not complicated medicine, that the knowledge required to make it successful could be condensed into simple codes and distributed among nurses, laypeople, and ARV users themselves. They declared, too, that stagnant and ill-functioning health-care systems would be brought to life when ARV medicine became popular medicine, and ordinary people began demanding it.

  “In the twentieth century,” Hermann was to tell me some time later, “the medical intervention that saved the most lives was oral rehydration fluid. A liter of water, half a teaspoon salt, eight teaspoons of sugar, saved millions from dying of diarrhea. ARVs are the most significant intervention since then. And it’s also a primary health-care intervention. No fancy machines, no organ transplants. You just need a nurse. And frankly, you don’t even need that.”

  MSF’s Khayelitsha project did not quite live up to Hermann’s ideal of nurse-administered medicine. The treatment sites in Khayelitsha were run by doctors�
��Hermann and his colleague Eric Goemaere. But in other respects, the project did begin to cultivate some of the flavors of popular grassroots medicine that MSF insisted was the only way to bring AIDS treatment to the poor.

  Among the ingredients of the project’s success, for instance, was the recruitment of a cohort of laypeople into support functions. Laypeople were trained to perform voluntary counseling and testing, establish support groups for antiretroviral users, and monitor adherence to treatment. Antiretroviral users themselves played a significant role, tracing people who did not turn up to get new batches of pills, recruiting others to test, and giving treatment a public face. In the course of managing their own treatment, users became highly conversant in the causes of illness, the pharmaceutical actions of the drugs they took, and the politics of public health.

  In short, the project’s assumption was that treatment would only work if animated by a social movement of laypeople and antiretroviral users. And indeed, through its work in Khayelitsha, MSF soon found itself in a natural alliance with the Treatment Action Campaign (TAC), the vanguard of South Africa’s social movement for AIDS treatment. Founded in 1998 by the former antiapartheid militant Zackie Achmat, it borrowed from an eclectic array of traditions, from the direct action tactics of American groups such as ACT UP to the spirit and culture of South Africa’s antiapartheid movement.

  For a time, Achmat was the face of South Africa’s treatment movement. His signature t-shirt, white with the letters HIV emblazoned in bright purple, was inspired by the legendary Danish practice of wearing the Star of David during the Nazi occupation in order to make Jews indistinguishable from the general population. However, Achmat is indeed HIV-positive, and not merely in solidarity with those who are. In the late 1990s, he announced that he would not start antiretroviral treatment until it was available to all South Africans. Under pressure from colleagues, he finally began treatment in 2002, becoming the best known South African on ARVs.

  Hermann Reuter and Achmat go back a long way. Both were Trotskyist militants during the apartheid years, way to the left of the mainstream antiapartheid movement. Indeed, Hermann began his AIDS work on the payroll of the organization Achmat founded; he was employed by the Treatment Action Campaign as an organizer shortly after it began. He knew next to nothing about MSF before the organization began AIDS work in South Africa.

  MSF began administering HAART in Khayelitsha in 2001. Within three years, more than a thousand Khayelitsha residents had begun treatment. The rate of patients’ adherence to their regimens appeared to be as good as, if not better than, in the affluent and literate gay communities of first-world cities. By the mid-2000s, the project’s lessons had spread well beyond Khayelitsha: nurse-managed government clinics across the Cape Peninsula were administering ARV treatment as a matter of course. The project had been a resounding success.

  “Our victory brought its own problems,” Hermann tells me. “A line started coming out about MSF’s success in Khayelitsha.

  “Everybody started saying, ‘Ja, you can do it in Cape Town, but Cape Town is not the rest of South Africa. Cape Town has a lot of academic doctors. If there are complications, there is Groote Schuur and Tygerberg hospitals, two of the best hospitals in the country, just around the corner. Why don’t you go somewhere where the drug supplies arrive once every three months when you are lucky? Go somewhere where there are no doctors and half the nurses’ posts are unfilled. See if you can put people on ARVs there.’

  “So we came to Lusikisiki.”

  That was in early 2003. By the time I met Hermann in late 2005, MSF had put out word that it had made fools of the skeptics. It had got the Eastern Cape’s wounded primary health-care system, with its vacant nurses’ posts and battered infrastructure, to deliver antiretroviral treatment to one of the most destitute and densely populated rural districts in South Africa. There were more than one thousand people on treatment, and adherence rates were even higher than in Khayelitsha.

  When I met the head of MSF South Africa, Eric Goemaere, in his office in Khayelitsha, he painted Hermann as a maniacal hero.

  “When we first visited the Lusikisiki clinics,” he tells me, “there was no paracetamol on the shelves. The TB drugs had been out of stock for several months. We thought, Shit, this isn’t going to work. We’re going to have to fix the entire primary health-care system. You need someone crazy and idealistic like Hermann. He basically went in and fixed the primary health-care system. There are drugs on the shelves. The place works. All in all it is a miracle.”

  Goemaere’s pride is double-edged. MSF wound up its Lusikisiki project less than a year after I interviewed him, leaving ARV treatment there in the hands of the provincial health department and the district municipality. Its intervention was always meant to be temporary; its goal, after all, was to show that ordinary nurses, not rich international NGOs, could administer a treatment program. What happens to ARV treatment after the heroic Hermann Reuter’s departure? And if it takes a crazy idealist like him, what of the dozens of rural districts staffed only by plodding, workaday managers?

  IT IS GROWING dark now, too dark to look for insects in long grass. We leave the garden and cross the yard next to the empty house, its windows reflecting the last of the dusk back at us. There might be a sliver of an allegory buried somewhere in Hermann’s maddeningly cryptic story of this house. He has dedicated his life to health-care activism, moving from place to place, burying body and soul in work. His presence, here and elsewhere, is by its nature transitory. And yet he rented a house with a garden and planted young trees, and he makes an extravagant performance of how difficult it is for a man with no permanent abode to care for the things he plants.

  I tell him about Sizwe: his village, his shop, the secret illness in his family, his inscrutable silence about ARVs. I tell him that I want to write a book that tracks and interprets Sizwe’s perspective.

  He responds with visible irritation. “I do not think that his story will reflect what is happening in this place,” he says. “It will not give a picture of what this program is about.”

  Sizwe’s apparent hostility to ARVs, he tells me, is exceptional. And the fact that he lives in Ithanga is also of concern. Ithanga is unusually remote, a difficult nine-mile journey from the nearest clinic. Hermann believes that whether a person embraces a health-care service is determined primarily by the accessibility of that service. Of course a young man from Ithanga will be unusually circumspect. If he lived five or ten miles south of where he does, he would be telling a different story.

  Hermann has introduced me to people about whom he would like me to write, HIV-positive people who began antiretroviral treatment in the early days of the program, people who now devote their lives to treatment activism in Lusikisiki.

  I am not sure, however, that those who have become treatment missionaries are necessarily the best people to write about. Perhaps there is a more interesting tale to be told about those beyond the margins of the ARV program, those who are skeptical and unsure. I tell Hermann of Sizwe’s haunted account of the day the mobile testing unit came to Ithanga: the pairs of eyes that note who goes into the makeshift testing center and how long their post-test counseling lasts; the whispering and the silent scorn.

  “Nothing you are saying is new to me,” he replies curtly. “In fact, I think that what you have described is a good thing. We in MSF have a very different attitude to confidentiality compared to the health department. The health department was saying you must not write on people’s clinic cards that they are HIV-positive. Everything must be a big secret. We are saying, unless people disclose they are not going to deal with AIDS. If it’s a big secret you are trying to hide from everybody, you will not be able to deal with it.

  “Your friend Sizwe, if he goes to test and he tests positive, then yes, the people in his community will know, and he will make some enemies. But the friends he makes will be more important than the enemies. The people testing positive develop meaningful relationships, the sort of relati
onships they have never had. Before, they were sitting around and doing nothing. Now, their lives become meaningful.”

  At first, his comment jars. I mistake him for saying that being chronically ill is better for the soul than being healthy; that those on ARVs have been granted the privilege of living lives somehow more human and more substantial than those of their peers. I imagine a secular church, fervent and dogmatic, scouring the countryside for converts. The history of the Transkei is littered with faith healers and prophets and their bands of followers. The thought that this program, which wields drugs rather than magic, nonetheless takes its place in an old story, is an intriguing one.

  But this is not, I learn with time, what Hermann is saying. He is saying that a mass treatment program will fail if secrecy and shame predominate, that a medical assault on a plague will only work when animated by the people it serves. And I will discover, as I meet more and more people on ARVs, that to embrace indefinite treatment is indeed to recalibrate one’s relation to the world, and that the primary tool of recalibration is dialogue. There are networks of ARV takers in many of Lusikisiki’s villages, and they talk. Their talk is about far more than drugs: it encompasses sex and love and work and the course of life; it is about the relation between all these things to one’s body. As public talk, it is by definition political and ideological: it carves out friends and enemies, it scorns and it praises and it excludes. But it is not a church. It is contradictory and messy and often wildly eccentric, and its content varies from village to village.

  Of course Hermann is irritated that I am writing a book about a skeptical man on the margins of his program; for it is surely to be a book about the limitations of his work.

  Magic Pills

  Between the day Hermann Reuter came to Lusikisiki in early 2003 and the day I met him in October 2005, the meaning of his work had changed a great deal. In early 2003, President Thabo Mbeki’s infamous doubts about the link between HIV and AIDS still formed the bedrock of national health policy. Antiretroviral treatment was emerging in pockets around the public health system, largely as a result of spontaneous local efforts. The government was administering an ARV program to prevent the transmission of HIV from mothers to children, but only because the Constitutional Court had ordered it to. Mbeki and his health minister still refused to roll out an ARV program accessible to everyone with AIDS.