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

  The people Hermann recruited and put on MSF’s payroll were young and literate. They lived in a rural town where career prospects were bleak, the course one’s adult life might take uncertain. Hermann gave them the prospect of a career, a new discourse with which to understand their lives and their town, and an ambitious project. They took to him and his work with voracious hunger.

  It was precisely these people whom Sizwe encountered on that Saturday morning at the school in Ithanga early in 2005. He took them to be members of a new cult, felt his distaste rising, and turned his back. What he had recognized, in his skeptical and fearful way, was the unmistakable fervor of young people speaking a newly learned language, their very sense of themselves invested in a new vision.

  A Lusikisiki clinic nurse ensconced in her job in January 2003 was in for an unusual year. Within months, her clinic corridors would host a cohort of busy and animated young people, a new language issuing uncertainly from their tongues. Her waiting room would begin to fill with the victims of a great plague, waiting for her to treat them; and for every one she treated, another three, four, or five would come to the clinic’s door.

  DID THE MAGIC pills do their work? Any answer ought to be measured and sober.

  By mid-2004, a person who entered the waiting room at one of Lusikisiki’s twelve clinics could expect to be treated for AIDS: no waiting list, no referral to another institution. Across the country, the number of rural health districts that could make that claim were to be counted on one hand. Given the parlous state of the clinics just a year earlier, the achievement was considerable.

  Yet to say that the treatment program had abolished despair, denial, and an accumulation of corpses from Lusikisiki would be a lie. One by one, I interviewed as many nurses and doctors as would speak to me from the medical wards of Saint Elizabeth’s Hospital. I never saw any hospital records to corroborate it, but between them they told me that at least one person a day died in their wards from pneumonia, meningitis, TB, or Kaposi’s sarcoma. Some had been referred by the clinics, but the vast majority had arrived at the emergency room mortally ill, straight from their homes. This suggested that out in the villages, many people who lived within walking distance of a decent clinic died without setting foot in its waiting room. I knew from my time in Ithanga that soon Jake’s brother, and later, Sizwe’s niece, might join those ranks.

  Also, the mortality rate among those who did start ARV treatment at Lusikisiki clinics was high: one in six died within a year of beginning treatment. After that, the mortality rate dropped nearly to zero, but the beginning was a dangerous time. The primary reason was poor hospital care. Many of those beginning treatment were sick, often critically. And despite Hermann’s complaint that the government did not invest enough in its clinics, rural hospitals were also desperately short of staff, expertise, and infrastructure. The wards at Saint Elizabeth’s could not manage the scale of the epidemic. Critically ill patients were stabilized and quickly discharged to make way for others.

  Nonetheless, in the month I arrived in Lusikisiki, the program celebrated its thousandth ARV user, which meant that more than eight hundred of the souls walking the village footpaths and the town’s main street would, if not for the treatment program, be dead or dying.

  THE PROGRAM’S ACHIEVEMENTS were always provisional, always a little precarious. The source of this instability was chronic staff shortages, and the effects they might have after Hermann Reuter’s and MSF’s departure from Lusikisiki in late 2006.

  Even at the program’s pinnacle, fewer than 60 percent of nursing posts at Lusikisiki clinics were filled. It was a source of great bitterness for Hermann. True, South Africa was suffering from a national shortage of nurses. But it would be hard to argue that the staff deficit in Lusikisiki’s clinics was no more than a symptom of national scarcity. The fact is that for the program’s duration, the district did not advertise a single clinic nurse vacancy. The problem was one of budgetary starvation, not a skills shortage.

  This was one of the symptoms of the philosophical differences between MSF and the South African government. MSF believed that clinics must constitute the front line in the battle against the epidemic, that they were the only health institutions close enough to the ground to reach everyone in need of treatment. Yet the government was rolling out its AIDS treatment program at hospitals, not clinics; across the country, hospitals thus received the lion’s share of posts and resources, turning the clinics into neglected stepchildren. MSF’s program thus constantly tugged against the logic of national budgetary allocations.

  So the dozens of vacancies at Lusikisiki clinics were not advertised. One consequence was that a Lusikisiki clinic nurse looking for a promotion would have to leave the district to get one. The signposts all pointed in one direction—out. It was quite possible that, in the wake of MSF’s departure, the cohort of staff it trained in AIDS medicine would gradually disappear.

  Even if the district retained its staff, another problem might arise. When MSF began bringing the epidemic’s victims to the clinics, nurses’ workloads accelerated alarmingly. At the beginning of 2004, a Lusikisiki clinic nurse saw an average of twenty-nine patients a day. By 2006, the figure had jumped to forty-seven. True, the corpus of energetic, Reuter-trained young laypeople in every clinic alleviated each nurse’s burden, making their forty-seven-patient-a-day workload possible. But that is not necessarily how an overworked clinic nurse views matters. The activists and laypeople in her clinic are drawing patients in their numbers, and she begins to resent their presence. In an attempt to regain authority over her clinic, she wages quiet war against the laypeople, and begins to ration her workload by sending patients away.

  Even with Hermann still in town, a fault line between nurses and MSF-trained laypeople was evident. Hermann himself wielded immense moral authority in the district health system. A nurse did not ration her workload under his gaze. But when his back was turned, his counselors and pharmacist assistants took flak.

  As for the laypeople themselves, they got their inspiration from Hermann. Each had been trained by him. Each had been seduced by his extraordinary dedication, his capacity to work sixteen-hour days, his persistence in inviting them into the world of his esoteric knowledge. There was little question that his departure would depress them. Whether his departure would derail them remained to be seen.

  It is quite possible that in his absence, the frenzy in the clinics would give way to a work-to-rule atmosphere. The program would not fall apart at the seams, but it would slow down. Patient intake would decrease, waiting lists emerge and grow.

  Soon after I arrived in Lusikisiki, I asked one of the laypeople Hermann trained, to characterize the nurses she works with.

  “I’d divide them into two,” she replied. “The first is happy that MSF is leaving in a year’s time. The second is sad. The ones who are happy believe we give them too much work. They will kick us in the head when MSF leaves. The ones who are sad, they know that they are saving lives now, and that they didn’t before, and it brings meaning to their own lives.”

  I asked her to tell me a story of a nurse who will be happy to see MSF go.

  “The other day,” she said, “a woman I know came into the clinic. I saw from the marks on her face she had shingles. I was surprised; I did not know she had AIDS. We said hello and talked, and a bit later it was her turn to see the professional nurse.

  “When the patient came out, she came to say good-bye. I asked her why she was not lining up at the pharmacy for her medicines. She told me the nurse had said she only had blisters from the sun. She had prescribed paracetamol.

  “I was so furious I was almost choking. I grabbed the woman by the hand, took her back to the nurse’s room, and said: ‘This woman does not have blisters from the sun. She has shingles. There are drugs for this. You must treat her.’

  “A few hours later, the nurse came to me and said: ‘You must be careful. You must behave yourself here. If you try to be the boss I will chase you away.’” />
  It would be a little hasty to join the lay worker in condemning the nurses in her first category, the ones pleased that MSF will be leaving, as the villains of the story. From the 1960s to the 1990s, South Africa trained black nurses in the thousands, and herded them into the ground level of its racialized health system. They were subjected to the condescension of the doctors and white nurses above them, and yet were the ones who had to deal directly with the despair of the black patients whom the health system failed. Now, in the context of personnel shortages and workloads unprecedented in their lifetimes, Hermann was asking them to staff the front trenches in a battle against a deadly epidemic.

  When I put this to Hermann he nodded his agreement. “The beginning of the program was a huge, huge shock for nurses,” he said. “We saw a lot of people die, and the nurses started to see how many deaths were HIV deaths. And now it was their responsibility. For the first time, dying people came to clinic nurses for treatment. It was the nurse’s patients dying. Someone comes to the clinic and says: ‘Your patient is dead now.’”

  To understand the depth of this fear among nurses that they would be held responsible for the deaths of patients, consider their position in comparison to Sizwe’s. He was born and bred in Ithanga. Everyone there knows him, his family, where he comes from. He is a local man through and through. What distinguishes him is his modest success. It has courted envy. He worries a great deal about the ill feeling his good life may provoke.

  Now consider a nurse, one who lives in a village as poor and remote as Ithanga. She earns a good deal more than Sizwe, lives in a home much fancier than those of her neighbors. With her education, her aspirations, her profession, she stands aloof from the village people around her. She is in all probability an outsider, on contract to work in the village for a time.

  She is in so many ways a stranger. And she works on the frontier between life and death. On some days she goes home to her fancy house and a villager who was her patient lies dead in the morgue.

  I talked to a nurse at Saint Elizabeth’s Hospital who spoke lyrically about the importance of primary health care.

  “If it’s so important,” I asked her, “why are you working at the hospital? Why don’t you go to a clinic in a small village?”

  “I’m scared to do that,” she replied. “I am not from here. People can tell that from my accent. I deal with sick people, with people who might die, and I am an outsider. It is possible they will accuse me of terrible things.”

  I ARRIVED TO a program celebrating great success, but a little unsure of its future. People were still getting sick with AIDS and dying without ever visiting their local clinic. Whether this was a good or a bad thing remained an open question. If everyone who needed treatment turned up in a clinic waiting room, it was not at all clear that the system would cope.

  On the Outer Edge

  The first encounter between Sizwe Magadla and Hermann Reuter goes remarkably well. The journalist and his interpreter, who has come to observe the treatment program discreetly to see whether it is suitable for his niece, meet the doctor early on a Monday morning outside the Médecins Sans Frontières offices in the center of town. We are to spend the day at one of the remotest of Lusikisiki’s twelve clinics, an hour’s drive along a dust road built into the contours of an endless series of valley walls.

  Sizwe expresses deference like no one I have seen before. I first witnessed it with his father. He lowers his eyes and watches the floor, and the shape and weight of his entire body demonstrate that he is in somebody else’s space. Yet he loses no poise; his own shrunken space is dignified and secure.

  And so he is with Hermann on the long journey to the clinic; he is in the doctor’s domain: he quietly waits for the doctor’s performance to begin.

  Hermann is not one to shrink from such an invitation.

  “I want to tell you both a story,” he says, a few minutes into the drive. “It is a true story about an experience I had in Namibia. I often tell it to Treatment Action Campaign activists when I am giving them a seminar. It is about the chain of events leading to death.

  “A child is born in a remote rural area in Namibia. There is bleeding from the umbilical cord. The traditional midwife stops the bleeding using dung.”

  He lifts his head and searches for Sizwe’s face in his rearview mirror. “You know about that?”

  “Yes,” Sizwe replies. “We do that, too.”

  “The baby is happy for a while,” Hermann continues, “and then after some time she begins to shake. There is something wrong. The child is very sick. Public transport to the hospital comes only once a week. The mother goes to the headman; he is the only one in the village with a car. She asks if he can take them to the hospital. He says no, he is busy. And he goes off to visit his girlfriend.”

  The telling of the story has transformed Hermann’s speech. The adverbs that on other occasions hang so tenaciously on the ends of his sentences have vanished. His words are clipped and purposeful.

  “The mother waits two days for the bus to come,” he continues. “Finally, she arrives at the hospital at night. The nurse on duty shouts at her: ‘If you had come before you gave birth, this would not have happened! I cannot help you!’

  “The hospital doctor reports for duty the next morning and he finds the child is dead. This doctor is me. This is a story of mine from Namibia. On the death certificate, he writes that the cause of death is tetanus. Was I correct to write tetanus? Was tetanus the cause of death? Why did the baby die?”

  He looks at us both in schoolteacherly fashion and waits for a reply.

  “You first,” he finally says to me.

  “One reason,” I say, “is that the midwife had not been educated about tetanus.”

  “That would have helped,” he replies, searching for Sizwe’s face again in his rearview mirror.

  “Another,” Sizwe says, “is that the mother should have gone for her shots while she was pregnant.”

  Hermann’s face lights up. “Why?” he asks. “Why must she be expected to wait for a week for the bus to come, and then maybe have to spend the night in a strange place? Why must it cost her so much money and time? She should have been able to walk to a clinic.”

  We drive in silence for a while. Sizwe considers a reply, then abandons it.

  “The baby was killed by distance from public health care,” Hermann says. “She was killed because she was too poor for the government to bother to build her community a clinic. And her community leader was not demanding a clinic because he was a headman with a car who likes to visit his girlfriend.

  “I have another story. It is much closer to home. Last summer, I go to the beach at Port Saint Johns. There are lots of school kids on the beach in their school uniforms. They are unsupervised because there is a bar right on the beach, and their teacher is in the bar getting drunk. I hear people shouting, calling for a doctor: there is a girl who is drowning. I say I am a doctor, and the people take me to this obese teenage girl lying on the beach. She is clinically dead. I begin resuscitation. I shout to the people they must call for an ambulance. No ambulance comes. I shout that people must get the teacher. He does not come. He is still getting drunk at the tavern. Still, the ambulance does not come. Somebody finally agrees to take the girl to hospital in a private car. Meanwhile, the girl has vomited; it is a sign of life, even though there is no heartbeat.

  “We arrive at the emergency room at the hospital, I tell the nurse who receives us that I am a doctor, and I ask her if she can put pipes down the girl’s throat. You see, with drowning victims, you always try to revive the dead; with drowning there is cooling of the brain, which means that brain damage is delayed. So there is always a chance.

  “But the nurse on duty says no, it is not the policy at this hospital to work on corpses. I say, please, there is still a chance to save this girl. The nurse says, no, this is a corpse; I will not work on it.

  “I am very upset now. I am sitting at the hospital. The girl is dead and all the fo
rms and papers of death are being filled out, and I am very upset. The police offer to give me a lift back to my car. On the way, they try to console me. They say: ‘Don’t be upset, doctor. It was God’s will.’ And that is the last straw for me. I start shouting at them. ‘Was it God’s will that her teacher was drunk in the bar? Was it God’s will that the ambulance did not come when it was called?’”

  His retelling of the story has released anger. What started as a rote Socratic tale has now been given life by vivid emotion. Sizwe and I are both silent. Hermann’s feelings have filled the car and infected us.

  “And the nurse,” I say eventually. “Was it God’s will that she does not work on corpses?”

  “No, I left that out.” Hermann giggles. He has returned to the present now, the anger of that day back in storage. “Solidarity with my fellow health-care workers.”

  During the following months, whenever I ask Hermann for his views about a death I have come across—a baby dying of diarrhea, a person whose immunity is still reasonably strong dying of AIDS—he shrugs ostentatiously and his face creases into a picture of ugly sarcasm. “I don’t know,” he says. “Why do people die? It was God’s will.”

  Now, in the car, Sizwe clears his throat and leans forward in the backseat.

  “There is no clinic in Ithanga,” he says.

  “I know,” Hermann replies.

  “There are no doctors or nurses.”

  “I know.”

  “Can you give us some advice. What should we do to get the government to build us a clinic?”

  Hermann smiles briefly, leans into the steering wheel with pleasure, and shifts his weight in his seat. One car journey, and the young man from an outlying village is speaking like a nascent activist.