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

by Jonny Steinberg

  I was fairly sure I knew at least one of the thoughts close to the surface of his mind. Eight months from now, Sizwe, together with seven or eight male relatives on his father’s side, would drive four cows from Ithanga to Nwabisa’s village. Sizwe would have five thousand rand in his pocket, the value of a fifth cow. A feast would await them at their destination. A goat would be slaughtered and there would be enough umqombothi beer for everyone to drink his fill. Sizwe himself would remain on the margins of the event. He would sit quietly in a room with boys and unmarried men. He would not make a showing at the main rondavel.

  On the party’s return to Ithanga in the evening, Nwabisa would be Sizwe’s wife. She would move into her in-laws’ home, perhaps for as long as two months, to be trained by her mother-in-law in her wifely duties.

  But this was all eight months into the future. Here and now, the couple was unmarried and the child in Sizwe’s arms was thus a Mabaso, not a Magadla. To make him a Magadla, Sizwe would have to pay the Mabasos a great deal of money, almost as much as bridewealth itself. A few days ago, I asked Sizwe what he would do.

  “He must be a Magadla,” he replied emphatically. “I must pay.” He paused and frowned, and then sighed deeply. “But it is not as simple as that. It is a lot of money. If the Mabasos promised that they would keep that money for his education, then it would be fine. But they won’t do that. So why must I give these people so much money, when the money should be invested in the child? It is hard. I am not sure what to do. Maybe we must wait. Maybe this one’s younger sibling will be the first Magadla.”

  Now I watched him gently picking the flakes off Mfanawetu Mabaso’s skin, and I felt quite sure that I knew the decision he would make. To pay for the possession of a first descendant would be greedy, precipitous, self-defeating. One cannot invest in one’s own eternity by robbing from the ones who will bring that eternity. This boy would not bear Sizwe’s name, but Sizwe would love him and bind himself to him nonetheless, and he would give him the best education he could afford. As for the next generation of Magadlas, there was time, and Sizwe was a patient man.

  He had thus begun living the life of a young man who had skirted a plague. Holding his child in his arms, eight days after the little one’s birth, the afternoon quiet of his in-laws’ homestead about them—these were emblems of a future untouched by AIDS and by the sterility and futurelessness it embodied. He had drawn a line: he himself was on one side, the victims of the epidemic on the other.

  And yet he was not prepared to test that assumption. He did not want to know for sure on which side of the line he stood. He would not test for HIV. This image of father and child he now enacted was not one in which he fully believed. It could be snatched from him anytime. It may already have been taken—by a virus in his blood.

  From whence did Sizwe’s fear come, this fear that at any moment he could be robbed of everything? Sitting next to him on the bed, I knew that I would not have finished writing his story until I understood why he would not test for HIV.

  Leaving

  The next patient to walk into Hermann Reuter’s examination room stopped my breath. His eyes were certainly alive: they were large and moist, and they glistened in the room’s fluorescent light. But the rest of him seemed borrowed from a corpse. His flesh was all gone, even his cheeks mere sunken hollows. Where he once had round shoulders, his body now ended in the lump-like protuberances of skin-covered bones.

  It was his neck, though, that drew me. It was very long and wrist-thin, and it sported a tightly bound, clean white bandage, one that covered only his throat, his Adam’s apple disappearing under it every time he swallowed. Momentarily, I was struck by the bizarre thought that his neck dressing was a rude and deliberate aesthetic, as if he was to take his place that night in the chorus of a cabaret of the macabre. Later, I would recall this odd image as the prelude to a series of dark, wounding thoughts.

  Hermann looked up from behind his desk, took in the sight of the skeletal man, and smiled cheerfully.

  “This woman is very pleased to see you,” he said, pointing at my interpreter, whose name was Phumza. “The last five patients were all women. She wanted to know why we don’t see any men.”

  The patient stared at Hermann blankly and began to unbutton his shirt.

  “I am coughing,” he said in Xhosa, Phumza translating for Hermann. “My throat is very bad. I have an injury on the neck. I was operated on there. Where they operated, my throat is now leaking pus.” His voice was strained, his words slurred by a thick and heavy tongue.

  “When was the operation?” Hermann asked.

  “Three weeks ago.”

  “Where?”

  “Kroonstad. I am in policing college.”

  “Did they say you had TB?”

  “No. I just injured myself.”

  “You’ve never had treatment for TB?”

  “No.”

  Watching Hermann hovering over his patient, a sensation began leaking into my body. It brought shame and discomfort, but I resisted the urge to expel it. The man sitting on Hermann’s examination table was already dead, a walking corpse: he was no longer one of us. I felt indignant: why is Hermann standing over a dead person? Why is he investing precious time and resources on this corpse when these ought to be spent on the living?

  More than aggression, there was triumph in these questions: my insistence on his deadness affirmed the fact that I was alive. I no longer had time for him.

  “And here at the clinic,” Hermann continued, “have you done the spit test and the blood test?”

  “I did the spit test today. The blood test last week.”

  “And what was the result?”

  “Positive.”

  “What was that?”

  “I am HIV-positive.”

  “Good,” Hermann said. “It is good that you can say it like that. You must practice saying it.”

  He carefully unwound the patient’s white bandage and put it down on the examination table.

  “There is another problem,” the patient said. “Inside the throat. Whenever I swallow.”

  “Yes, I can see,” Hermann replied. “It is the same problem as the outside. The pus is dripping inside, too.”

  “When I eat rice,” the patient said softly, “it comes out the hole.”

  Hermann raised his eyebrows. “Well then you must go straight to the hospital,” he said emphatically. “I thought we’d try with the medicines for a week, but no, I think you must go straight to the hospital.

  “How did you get this wound in your throat?” Hermann asked.

  “I don’t know. I got high on ganja, and then I don’t know what happened.”

  “It looks like a knife,” Hermann remarked, almost to himself. “It’s a stab wound.”

  A nurse came in and asked Hermann to help her with a diagnosis. He excused himself, leaving me, Phumza, and the patient to await his return.

  Hermann’s fan hummed and rattled. Phumza stared at the patient’s throat.

  “How did you get that wound?” she asked quietly in Xhosa.

  He bowed his head and replied softly. “I tried to kill myself.”

  “When you tested HIV-positive?”

  “No. It was before that.”

  “Then why did you do it?”

  He did not reply. She asked again, and he turned his head away.

  None of us spoke. The feelings I had toward this man had shamed me and I felt agitated and uncomfortable in my skin. I tried to will a sense of empathy. Instead, a passage came to me, quite unexpectedly, from Isaac Bashevis Singer’s childhood memoir. Singer watches a group of mourners walking through the streets of 1920s Warsaw. They are following the coffin of a man named Mordecai Meir. “Their manner,” Singer writes, “seems to say: ‘Mordecai Meir is Mordecai Meir, and we are we. He’s a corpse, but we’re alive. He’s about to be buried, but we must pay our rent and our children’s tuition. We no longer have anything in common.’”

  IN THE LATE afternoon, after the last
patient of the day had gone, I began to share with Hermann the ugly thoughts I had when I watched him examine the skeletal man. I wanted to tell him that what I had felt was a variant of something universal; that we sniff out death and triumph over the dying in order to validate a deep-set belief that death does not happen to us, only to others. I wanted to ask him how a movement that aims to forge solidarity around the HIV-positive confronts that fact. I began speaking of the feeling that came over me that the patient was already a corpse.

  “I am pleased you noticed that,” he interrupted breezily. “It is one of the two main causes of stigma. The family sees the patient is getting thinner and thinner and soils his bed and can’t eat. They think, He’s dead anyway. Why waste our time?”

  “And the other main cause of stigma?”

  “Money. The patient is a financial burden on the family. ‘We don’t have sugar because of you. You are killing us all.’

  “And the thing is that both these causes of stigma are easily addressed. The financial burden is addressed by the government disability grant. And the other cause of stigma, the one you noticed today, it is taken away by the drugs.

  “You saw that man today and you saw death. For me, it is exactly the opposite. He is my favorite kind of patient. I know that in twelve weeks he will be back to his ordinary weight and his skin will look healthy. That is the power of these drugs. And people see that power. There is no hiding in these villages.

  “I have only one worry for that man we saw today.” He looked at his watch. “It is ten to five. Less than an hour ago, at the hospital, the doctor will have walked through the OPD deciding which patients to admit to the wards for the night. There are a lot of patients, much more than the number of free beds. Maybe the doctor looked at our patient’s card and thought, Oh, this is Hermann Reuter’s patient from the clinic. We don’t have enough space for all these clinic referrals. I’ll send him home.”

  It was indeed as simple as that for Hermann. The problem was never the people, always the state. What was happening in villagers’ heads was secondary. What was happening in the health-care system was what really counted. If the drugs were accessible, the treatment good, the clinic lines short, the hospital beds free, people would come, and they would heal. Both their bodies and their minds would heal. Like death, stigma was a function of poor health care.

  “From your perspective,” I told him, “my book is irrelevant. I am exploring the health-seeking behavior of ordinary people. You’re telling me that’s worthless.”

  “Yes,” he replied. “Not to discourage you, though.”

  HOW CLOSE DID Hermann Reuter and Médecins Sans Frontières come to proving the point that took them to Lusikisiki in the first place? When MSF established its Lusikisiki project, it said it wanted to show that any health system, even the most rickety and dysfunctional, could be made to provide everyone who needed it with antiretroviral treatment. It said that any population, even the people of a remote, poverty-stricken place debilitated by AIDS stigma, would come and get treated.

  MSF arrived in Lusikisiki in early 2003. Exactly three years later, it began to meet the most important of its self-imposed measures of success. The best available actuarial model of the rate of the South African AIDS epidemic suggests that between 100 and 110 people fall ill with Stage IV AIDS in Lusikisiki every month. By the end of the first quarter of 2006, about 110 people a month were beginning ARV treatment in Lusikisiki. The rate of treatment had finally caught up with the rate of illness; it was now time to accelerate further and begin catching up with the long backlog.

  As for whether patients stayed on treatment, the figures were particularly pleasing to MSF. When the South African government began, belatedly, to roll out a national ARV program in 2004, it did so through hospitals, not clinics. MSF disagreed. The South African AIDS epidemic was too extensive, shortages of medical personnel too severe, to restrict treatment to hospitals, the organization said. Programs would quickly bottleneck. The ill would either die waiting, or they would not even bother to come.

  Besides, MSF argued, patients were far more likely to adhere to treatment at a clinic than at a hospital. The average hospital patient has come from some distance away, usually at great expense. She is counseled and briefed, she is given a supply of pills that she slips into her bag, and then she vanishes. The personnel who treated her hope to God that she takes her pills and comes back the following month.

  But if you roll out through the clinics, the patient lives perhaps five hundred yards from the nearest community health worker, perhaps a mile or two from the head nurse. Everyone knows her name. If she does not turn up for her next batch of pills, clinic layworkers will find her.

  And so it proved in Lusikisiki. At the HIV unit in Saint Elizabeth’s Hospital in the center of town, 17 percent of patients had been lost to follow-up by early 2006. In Lusikisiki’s twelve clinics, the figure was 2 percent. Both in getting people on treatment and in keeping them there, the clinics were clearly the superior of the two institutions.

  Only the churlish could deny that MSF’s achievements were considerable. More than half the nursing posts at Lusikisiki clinics remained vacant. Aside from Hermann and an MSF colleague, no doctor had set foot in a Lusikisiki clinic in years. And yet 110 people a month were signing up to treatment and most were coming back. It seemed a vindication of MSF’s vision at its most idealistic.

  TO HERALD THE program as an unmitigated success, however, would be very hasty indeed. The system may have been absorbing 110 new patients a month, but it was groaning under the strain. The sight of the lines outside the clinics in the morning took one’s breath away. The daily workload of clinic nurses had more than doubled since MSF came to town. The beds in the hospital were full, with critically ill patients being sent home to die.

  MSF was scheduled to hand the ARV program over to the Eastern Cape Health Department in October 2006. The real test would come after the organization’s departure. They had said that ordinary, overworked nurses could put people on ARVs across the country. If a solitary program in Eastern Cape failed the moment it was left to itself, the organization would have failed spectacularly.

  The truth is that by mid-2006, nobody could say for sure what would happen to the program after MSF left. The nongovernmental organization had wanted to show the South African government that investing in clinics as well as hospitals was the only way to treat the casualties of the AIDS epidemic. And yet it was precisely government’s underinvestment in clinics that posed the gravest threat to the program after MSF’s departure. In district after district, hospitals, not clinics, were being accredited to administer antiretroviral treatment. And since it was the accredited site that courted the lion’s share of new resources and posts, the clinics became AIDS medicine’s stepchildren.

  The Lusikisiki clinics were victims of this syndrome. Not only were they more than 50 percent understaffed, they had not advertised a single vacant nurse’s post during MSF’s last year in Lusikisiki. A Lusikisiki nurse looking for a promotion would have to leave the district and go elsewhere, probably to a hospital. It was quite conceivable that the entire cohort of nurses Hermann Reuter had trained in AIDS medicine would soon disperse to all corners of Eastern Cape.

  That was just the first of several worries. Another concerned the management of the program. The primary health-care district under which Lusikisiki fell was run exclusively by former nurses. The South African nursing profession has been referred to as a “feminized military.” Professional nurses take instruction from chief professional nurses. Chief professional nurses do nothing without the say-so of a doctor.

  And yet there were no doctors in Eastern Cape primary health-care districts. And so if the nursing profession is indeed a militarized hierarchy, in Lusikisiki it ended at the rank of lance corporal. The district manager seldom acted without instructions from above, especially in the political minefield of AIDS medicine.

  It was impossible to say how the nurses who ran the system would cope w
ithout Hermann Reuter. They were exasperated by him, at times they resented him, but he brought a flexibility and capacity to solve problems for which they were grateful. MSF was donating its two vehicles to the district, but would their licenses be renewed every year, and would they keep getting gasoline? At some point, patients would begin developing resistance to their drugs and would have to go on to second-line treatment. Would managers develop a sound treatment protocol, and would they disseminate it across the district? Or would they instead wait for an instruction that never comes? These were some of the known uncertainties. There would be many others nobody had thought of.

  Then there was the fate of the young laypeople and activists Hermann had distributed into the clinic system on MSF salaries. There can be little doubt that their work had animated the ARV program. When MSF set up camp in Lusikisiki, the two gravest problems in the clinics were drug supplies and staff shortages. It was the young men and women Hermann recruited as pharmacist assistants who brought the drugs flowing to town, bombarding the Mthatha medicine depot with volleys of calls and demands, clearing blockages between the local drug reception center and the clinics, and monitoring nurses’ supply requests for signs of logistical errors.

  As for nurse staffing shortages, it was the adherence counselors Hermann had recruited who made it possible for nurses to withstand the workload the ARV program had placed on them. They were the ones who took each new patient on the long, time-sapping journey from testing to treatment, who monitored adherence and followed up on those who did not return to the clinics to replenish their pills, who collected and analyzed each clinic’s growing archive of patient data.

  What would become of them after MSF left was uncertain. The local district did not have money to pay their salaries. MSF formed a new nongovernmental organization to support the work of the adherence counselors, but with limited funding that the new organization itself would soon have to replace. As for the assistant pharmacists, the provincial government said it would consider paying their salaries from a special fund, but nothing was certain.