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

  “I’ll be honest with you,” he says. “Your community applies for a clinic and they will place you on the list behind twenty-three other places that have asked for clinics. They will start building your clinic in three or four years if you are lucky. If you want a clinic sooner, you need to fight. You need to show that there is urgent need for a temporary clinic to be put in until a proper clinic is built. To do that you need the community to start shouting. You do that, you will get your clinic.”

  Sizwe nods and says nothing.

  WE ARRIVE, FINALLY, at the clinic we are to visit. It is too small for its premises: some two acres of bare ground, surrounded by a barbed-wire fence, the clinic a single-story house set in the distance against the back of the property. Hermann parks behind the building, and a dozen or so people spill out of its back door to watch us. We unload the boxes of drugs he has brought with him. Our audience steps back to make a path as we move inside, our arms laden with parcels.

  We walk in to a dense body of humanity. Seven or eight long rows of people, each individual on a plastic chair, stretch across the length of the waiting room. There are people sitting on the floor in the narrow spaces between, behind, and in front of the chairs. Others stand in a tightly packed line against the wall. Given the number of patients it hosts, the waiting room is oddly quiet: just a gentle murmur. Perhaps people have interrupted their conversations to watch the arrival of the doctor and his entourage.

  Hermann is greeted by a counselor. He looks at her quizzically.

  “They heard that the doctor was coming,” she says blandly.

  He takes in the crowd and smiles, but not happily.

  “Okaaay,” he sighs, largely to himself. “Is there a room I can use?”

  Somewhere in his smile there is pleasure: well over a hundred people have come here at a moment’s notice on the strength of a rumor that he will be visiting. That is a good thing, at least in part. Even out here, on the outskirts of the ARV program, people come in numbers because they know that there is treatment to be had. Far better this bursting room than an empty clinic. Yet this is a nurse-based system Hermann is building, and the fact that the rare presence of a doctor has conjured this crowd is not an unmitigated good.

  And indeed, once an examination room has been found for Hermann and work is ready to begin, the woman who joins him to assist is not a nurse in her starched white uniform and maroon epaulettes, but a lay counselor in civvies.

  Hermann frowns. “Where’s the nurse?”

  “Late,” the counselor replies. “She has been on leave with her family. She had to drive from King Williams Town.”

  King Williams Town is at least a five-hour car journey from here. It is nine in the morning. If the nurse managed to leave home at four, she will be arriving any minute.

  Hermann turns to Sizwe and me. We have found two chairs in the far corner of the room, as close to out of the way as we can get.

  “A clinic of this size should have at least two professional nurses and two staff nurses,” he says. “This one has none. So we have one temporary nurse after another. This one, the one who is on her way now, lives at the other end of the province. She has never practiced ARV medicine before. And she is doing the work of four people.”

  I am struck, now, by the import of the didactic tales Hermann told us in the car. They constituted something of a template over the journey we were traveling. If the people in the waiting room outside had been born twenty miles from here, on the outskirts of Lusikisiki’s town center, they would have visited a very different clinic. The one in town has all the facilities of a local metropolis: it has five professional nurses; its stock of medicines is managed and dispensed by full-time personnel; it is a center of activity for a host of counselors and treatment activists; a doctor visits at least once a week. In this place, there is one temporary nurse who has never practiced ARV medicine. The distance we have traveled this morning suddenly seems immense.

  THE FIRST PATIENT to enter the examination room is a beautiful young woman, a most unlikely exemplar of chronic illness. Her thin braids frame a regal, high-boned face, one that exudes health.

  Hermann examines the clinical notes in the folder she has handed him. He looks up at her, smiles mischievously, takes another look at the notes, looks at her again, and bursts out laughing.

  “You’re not sick,” he says.

  She is shocked and indignant. “I am sick, doctor. It is the glands in my neck.”

  “They are swollen still?” he asks cheerfully.

  “There is no change.”

  He pushes his chair closer to her, slips his fingers under her braids, and rests them on the sides of her neck. He is still chuckling to himself.

  A doctor’s visit is too rare to be wasted on patients who are not gravely ill. Usually, the people ushered into Hermann’s room have stubborn or complicated opportunistic infections, cases a nurse struggles to diagnose and treat. Whoever is managing the line outside must have slipped up. The young woman in the patient’s chair should have been attended to by an assistant.

  Sizwe and I have been allowed into the examination room under two conditions. Each patient is to be briefed about our work and given ample opportunity to object to our presence. We are also required to leave the room during physical examinations. Unfortunately, our presence changes the nature of the consultations a little; “a crowded room is seldom an environment conducive to personal talk,” Hermann was to tell me later. And so his consultations are perhaps more perfunctory than usual.

  Sizwe has described my work to the patient and she hurriedly nodded her consent. She pays us no further attention. Now Hermann hands us her folder. I put it on my lap and we read it together.

  She has been on ARVs almost two years; she is one of the earliest patients in the program. Her treatment has been almost trouble-free, the only problem a chronic persistence of mildly swollen glands.

  “In nine out of ten cases,” Hermann says as he examines her, “the ARVs clear up the glands. This is the tenth. I don’t know what to do. I have nothing to offer. There are some things I don’t understand.”

  We read in her folder that she is due to come in for a new batch of ARVs next week. She must have decided to come early when she heard that the doctor would be here.

  “Show me her pillbox,” Hermann says to the counselor.

  “The old patients don’t bring them,” the counselor replies. “They know their drugs.”

  The pillbox Hermann refers to consists of fourteen containers, each with its own transparent plastic window and window handle. The containers are arranged into seven rows of two; each row is marked by a day of the week, each individual window by the word morning or evening.

  Hermann looks at the counselor suspiciously.

  “She’s healthy,” he says. “Her CD4 count is high. Her viral load is undetectable. I’m sure she’s been taking her pills. But you must not relax with the old patients. It is after two years that they begin to relax. I want you to get all your patients who’ve been on treatment over eighteen months together and ask them how treatment is going.”

  He gets up, rummages around in a cupboard, and returns to his chair laden with several bottles of tablets and a fourteen-window pillbox. He puts the pillbox on the table in front of the patient and opens each window. Smiling at her conspiratorially, as if they are playing a game the others in the room will not understand, he opens all the tablet bottles and pours their contents onto the table, mixing everything together. There are small red-and-white capsules, enormous mustard-colored tablets shaped like footballs, and brilliant white, disk-shaped pills. We all watch his performance patiently and in good humor. The counselor is smiling thinly for the first time.

  Hermann looks at the patient and nods. “Do your thing.”

  She responds to the challenge with enthusiasm, sifting through the pile of tablets and slowly filling each of her fourteen windows. She arranges the pills in threes.

  “And what are this one’s side effects?” Herma
nn asks, pointing to one of the yellow footballs.

  “Agape,” she replies. Vomiting.

  Sizwe’s face broadens into a wide smile. He whistles through his teeth. He is impressed. Hermann watches him with evident pleasure and smiles back at him. Once more, the response of the young man from the remote village comes straight out of the textbook of best responses.

  The textbook says that a person with Sizwe’s life experience will never have witnessed biomedicine as Hermann is practicing it. He will have seen public health campaigns in which people are lined up and vaccinated like cattle; he will have visited inscrutable white or Indian doctors who would never deign to share their diagnoses with him, and who hand down medicines with the imperiousness of a Moses returning from Mount Sinai.

  If people are to administer their own lifelong treatment, they must have a lively relationship with their medicines, a relationship at once emotional and cognitive. They must know the name of each pill, its shape, its color, its nickname, all its potential side effects. They are stuck with these tablets for their lives. Their relation to them will at times be hateful and fraught and unhappy. The tablets will perhaps make them sick, fail to stop them from getting sick, change the shape of their bodies. Best to develop a language with which to speak to them.

  It is not just the pills, of course. Internal medicine’s jargon of measurements—CD4 counts, viral loads—must become instruments through which patients monitor the progression of their health, breaking the seamlessness of a treatment with no end. A viral load is the amount of HIV in the blood. If antiretroviral treatment is working as expected, rendering the virus in her body dormant, the patient’s viral load should be undetectable. A CD4 count is a blood test measuring the strength of the body’s immunity. A healthy, HIV-negative adult should have a CD4 count of more than 1,000. As the virus attacks the immune system, the CD4 count drops. According to South African protocol, antiretroviral treatment begins when the count drops below 200. When the pills begin to work, the patient’s CD4 count begins rising, and stabilizes at levels that rival the strength of her immunity when she was HIV-negative. Consulting her folder, I see that this patient’s CD4 count was 181 when she started treatment. It is 512 now.

  Her new batch of pills in her bag, she makes her way to the door.

  “Was your boyfriend here for Christmas?” Hermann calls after her.

  “Yes.”

  “Condoms?”

  “Sometimes.”

  He turns to the counselor. “Have you explained to her the risks of reinfec—”

  “She knows,” the counselor snaps.

  THE NURSE ARRIVES. Hermann gets up and shakes her hand and makes a great fuss of her.

  “Thank you,” he says. “Thank you for taking up this temporary post, for helping us out. And thank you for getting up so early this morning.”

  “Please, doctor,” she replies. “This is my job.”

  The counselor shifts to the far corner of the table to make space for her. The nurse settles in next to Hermann. She is visibly discomfited by the doctor’s proximity. She does not know what to do with her hands.

  There is a new patient in the room. She is young and very nervous. Hermann settles down in his chair and pages through her clinical notes; she watches him unhappily.

  Her case history records that she tested HIV-positive just over a year ago. Her latest CD4 count was taken last month; it is 284. She is, at the very least, several months away from ARV treatment. If things are going as planned, she is attending a support group every other week at the clinic for HIV-positive people. She will soon move on to an ARV support group where she will be prepared for lifelong treatment.

  There is an enormous growth on her left thumbnail. Her case history records fungal infection of the fingers, but does not mention any prescribed treatment. Hermann hands the nurse the folder and waits for her to finish reading it. She looks up nervously. He points at the thumbnail.

  “What is the correct treatment for that?” he asks.

  “I don’t know.”

  He looks down, begins to add notes to the case history, and speaks without looking up.

  “I am prescribing griseofulvin, an antifungal medication.”

  He turns to the patient, begins explaining the treatment, and tells her the fungus will clear up within four months.

  The diagnosis and treatment are more than routine. They ought to be second nature.

  THE PATIENT SITTING at the examination table is young—late teens, early twenties, perhaps. She is accompanied by her mother. They both wear heavy frowns and grave faces; they are expecting, it seems, to receive news of the young woman’s doom.

  It is midafternoon. The patients have been streaming in and out of the examination room. By the time we leave, Hermann will have examined some seventy people. The nurse slipped out some time ago to find an examination room of her own; if everyone in this crowd were to see Hermann, we would be here well into the night.

  The nervous young woman’s last CD4 count was 273. All things being equal, it is not quite time for ARVs. Her clinical notes record that she is in the middle of a course of TB treatment. She and her mother are here because there are sores on her thighs and on her tongue. They do not like the look of them. In the last few weeks, she has also been finding blood in her stool. When they heard that the doctor was on his way, they dropped what they were doing and walked to the clinic.

  Hermann takes one look inside her mouth, hurries back to the clinical notes lying on his table, reads for a moment, then slams his pen down in irritation.

  “Why is this woman not on ARVs?” he snaps at the counselor.

  She shrugs.

  “Who was the sister who saw her?”

  The counselor picks up the patient’s folder and pages through it halfheartedly.

  “Was it the sister who was here now? Why is she gone? Does she not like seeing patients with me?”

  “She likes,” the counselor says, “but she didn’t know you needed her.”

  “I don’t need her,” Hermann replies curtly. “She needs me.”

  He gets up and returns to the patient and her mother.

  “Has a nurse or a doctor ever spoken to you about the sores in your mouth?”

  “No,” the patient replies.

  “It is Kaposi’s sarcoma. We call it KS. It is a cancer that sometimes comes because of AIDS. It is difficult to treat, especially here in Lusikisiki. The only way to treat it here is through ARVs.”

  He pauses to wait for questions. Both women are silent.

  “ARVs are designed to treat HIV,” he continues. “They are not designed to treat KS. It is only a little bit effective.”

  He turns to the counselor. “Her CD4 count is 273, but she must start ARVs now.”

  He swivels to face the mother. “Usually, we start treatment when it moves below two hundred. But because of the KS, we must start ARVs now.”

  He asks the patient to open her mouth and points to the growths. “They will get bigger and bigger without ARVs,” he says. “You will not start ARVs today. It is a lifelong treatment. We must first educate you about how to use them properly.”

  “But if we delay,” the mother says, “won’t the cancer proceed?”

  “It will proceed. But if you don’t take ARVs properly it will proceed anyway. If the ARVs are taken the right way, they will strengthen the immune system. Hopefully the immune system will fight the cancer.”

  Hermann is speaking to the patient’s mother, but his words are intended as much for the counselor in the room, who, Hermann tells me later, is among his best. She will be seeing the girl with KS within the next week, perhaps for as long as two hours, to tell her in far greater depth about her cancer and about the treatment she is to receive.

  Within minutes, the girl and her mother are gone, their places in the patient’s chairs taken by others. The ill come and go with such speed, I struggle to maintain the boundaries between them.

  Hermann looks at me and smiles humorlessly.
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  “What do you think are her chances of survival?” he asks.

  “I don’t have the knowledge to guess,” I say.

  “In Lusikisiki, they are maybe fifty-fifty. If she was in Cape Town, they are maybe ninety percent. There she would be hospitalized to test the blood in her stool. She would be put on chemotherapy treatment. Here, the hospital is full and there is only sometimes chemotherapy, usually not. Here we can treat her diarrhea and her TB. We cannot treat her KS. ARVs are not meant for treating KS. Maybe they will strengthen her immune system enough for her to fight the cancer. Maybe not. Later she will be asked if she has family in Durban.” He glances at the counselor to ensure that she is listening. “If she can, she must be treated in a city.”

  ABOUT FIFTEEN MINUTES later, after another two patients have come and gone, I try to recall the expression on the face of the young woman as Hermann delivered his bad news. I find that I cannot recollect her face at all. I try again and again. Her face will not come to me.

  This is my first conscious experience of my own prejudice, the first time I have watched myself write off a life that is still being lived. Now that I am aware of it and begin to look for it, the symptoms will grow both darker and more vivid.

  IT IS LATE afternoon. The line outside the door to Hermann’s examination room has been whittled away. Five or six solitary souls sit slumped in chairs, waiting to finally see the doctor.

  An impossibly large man stoops through the door, straightens himself to full height, and shakes Hermann’s hand. He must be six feet five at least. He wears a pair of overalls, unbuttoned to the top of his stomach, no shirt underneath. The pectorals on his bare chest push the flaps of his overalls aside like curtains.

  He sits down in the patient’s chair. Hermann picks up his folder, begins reading, then drops it. He looks up, his eyes wide, his nostrils flared.