IHT: A Malawi AIDS patient's exceedingly rare choice
Just 30 nationwide get costly 3-drug therapy.
2 November 2000
BLANTYRE, Malawi - The surprise in this diseased and dying place is not the man with AIDS, it is the sheets on his hospital bed. They are clean. They are ironed. They are a pleasant design of pastels. And most important, they are soft, giving immeasurable comfort to the 50-year-old man who is tucked in between them, listening in silence as his doctor explains what it will take for him to become one of the luckiest people in Malawi. "So there are two issues you would have to be clear on," the doctor, Jack Wirima, is saying. "The first one is the duration of the treatment. It would have to be taken for a long time." "For life?" asks the man, whose first name is Yasaya, whose voice is faint, whose arms are well on their way to bones. "Yes. For the rest of your life. That's the first. And the second is the cost," Dr. Wirima goes on, explaining that the price for the treatment works out to about $10,000 a year. The treatment involves three drugs that, taken in combination, can prolong the life of an AIDS patient significantly. In the United States, where the treatment has become standard, the AIDS-related mortality rate fell 75 percent in three years. But in Malawi, one of the poorest countries in the world, and one of the sickest, the treatment is not standard at all. The number of people who are HIV-positive in Malawi: more than 1 million. The number on triple-drug therapy, according to interviews and records of drug inventories: 30. "So," Dr. Wirima says. "Let me know." "Thank you," Yasaya says quietly, and then he settles back, wondering how he will be able to become number 31. It will take several days for him to sort this through. He will have to decide what to say to his wife, who prays for his health and sleeps in a chair next to the hospital bed and tidies him up after he vomits, and has yet to be told he tested positive for HIV, the virus that causes AIDS. He will have to decide what to tell his employer, who he fears will not want to pay for his care, and maybe will no longer want him as an employee if his diagnosis is disclosed. He will have to decide how much of his income he is willing to spend before staying alive becomes, in his own mind, an act of selfishness. The United Nations reports that HIV/AIDS caused 70,000 deaths in Malawi last year. The disease has created 400,000 orphans in Malawi since the first case was noted in 1984, reducing life expectancy from 47 years for a baby born in the mid-1980s to 36 for a baby born now, and to this point, infecting 16 percent of the adult population. "These unfortunate 1 million people," is what Wesley Sangala, a senior Malawian health official, calls those in his country who are infected. "What can we do?" he asks. "Really, what can we do?" But even in the poorest, most devastated places, possibilities exist, and in Malawi they can be found in a 64-bed hospital in Blantyre that is surrounded by a tall iron fence and has a sign above the front door that reads, "Right of Admission Reserved." This is Mwaiwathu Private Hospital. And as the name, the sign, the fence and the guards at the entry gate make clear, it is not for everyone. Rather, as Dr. Wirima puts it, "If you can pay, you can come here." Those who do include government officials and the business executives whose medical insurance allows them access to a kind of care that most Malawians simply cannot imagine. Yasaya is one of those businessmen. Unlike most Malawians, who live in villages, in huts that have neither plumbing nor electricity, he lives in a house with several bedrooms and bathrooms and, dominating the living room, a large television set connected to a satellite dish. At night, he and his wife like to watch movies as they sit beneath family photos and a wall-hanging that says, "Have Faith in God." During the day, when he is not at work, he likes to rest outside in a wicker chair under a large shade tree while his wife sits nearby doing embroidery. It is a pleasant, upper-middle-class existence - or was until Yasaya started to get sick. Because their town is near Lake Malawi there are plenty of mosquitoes around, and at first he suspected malaria. But it turned out to be tuberculosis. Followed by malaria. Followed by illness after illness - and weight loss, weakness, lethargy, a constant cough and a continuous fever, which is why he was not surprised when an AIDS test came back positive. But even a year of sickness did not prepare him for how ill he was to become. Late one night when he could not stop shaking, he went to the emergency room at the government-run hospital. Like all public hospitals in Malawi, it is severely overcrowded. Patients not only fill every bed, they sleep on the floor. Nurses are scarce. Only the most basic drugs are in stock. On that night no doctor was available, so Yasaya, still shaking, went home. And the following morning came to Mwaiwathu Private Hospital. Where there are flowers in the foyer. Where the hallways always smell of pine spray. Where, in a country in which the annual per-capita income is less than $200, the charge for a bed is $50 a day Where in one of those beds, Yasaya is explaining how he might have become infected, saying maybe it was the time he had to carry his dying brother, who was bleeding and too weak to walk. "Or it could be the condom that broke. Or it could be the hospital. Maybe they reuse syringes." He looks at himself. He is on an IV. He is catheterized. He is, for the moment, alone. His wife is out in the hallway. "It was sex, basically," he says after a while. "But I don't know who." What he also does not know: very much about anti-retroviral drugs, which, though not a cure for AIDS, have had a dramatic effect on mortality and morbidity rates in developed countries. He does not know about the ongoing debate over worldwide access to these drugs in which certain aid organizations are saying that anything less than full access in even the poorest countries is unconscionable, and drug companies are saying there has to be a balance between charity and business, and any number of studies are saying that even if the drugs were available, there are plenty of other problems that would prohibit their administration. He doesn't know anything about AZT, the first of these drugs, which has been in use for 13 years. He doesn't know about 3TC, another commonly prescribed anti-retroviral often used in tandem with AZT, or about the subsequent discovery that a third type of drug used in combination with the other two can restore an infected person's immune system to near-normal levels. It is this third drug, known broadly as a protease inhibitor, that has offered the most hope for HIV/AIDS patients. But Yasaya knows nothing of this, either, or that Mwaiwathu Private Hospital keeps a small supply of a protease inhibitor called Crixivan locked in the pharmacy. Or that it is the only place in all of Malawi that stocks Crixivan. Or that a one-month supply costs about $500 What he does know: $500 is what he earns a month, after taxes; there is a house to pay for and food to buy, and his children's school tuition is coming due. Of course, he wants the drugs, but if his company does not pay for the treatment, "I would have to abandon it. It would be too costly." Meaning? "I would die. Sooner than later. But sometimes dying is not the end," he says. "I would just relieve myself of certain obligations. If I live, the expectations of my family are very high." Such are the unsentimental calculations of one man in a hospital bed - and on a much wider scale of Malawi itself. The government has acknowledged the scope of AIDS, producing an official "strategic framework" for dealing with the disease over the next several years. But the plan focuses on prevention. It pays hardly any attention to those already infected. What about them? "Well, they'll be dying at various rates," says Wesley Sangala, the health official who oversaw the development of the plan. How much of a priority is their treatment? "In reality, we cannot entertain it," he says, sounding resigned. "It is just too expensive to contemplate. So all we are saying, unfortunately, is that they have to die."