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Mpumalanga Province is "worse than the norm," says Andy Gray, an expert on drug availability in South Africa with the independent organization Health Systems Trust. But he adds that in rural clinics around the country, drug shortages "are not uncommon." Here in Mpumalanga, the province with the second-highest rate of HIV in South Africa, Kelvin Billingurst, the chief medical officer in charge of AIDS, says, "If we can't have drugs for TB and STDs, then we can't even begin to think about fluconazole."
"That is a bureaucrat's viewpoint," says Zackie Achmat, one of the founders of TAC and an architect of the current Pfizer battle. "It's their administration that is bad." He hopes that by pushing for fluconazole, the larger problems of the health care system will come into focusand under pressure.
Achmat also hopes something else will become clear: the fact that there are life-prolonging treatments. He points out that the government has not yet issued national treatment guidelines and says that for many opportunistic illnesses, "The line is, very quietly, 'Don't treat.' "
Certainly that is true for cryptococcal meningitis. A few large hospitals do treat this disease, but most medical centers are more like Natalspruit Hospital, serving three teeming, crime-ridden townships outside of Johannesburg. Here, the most common problem is not HIV but traumainjuries from violence, car crashes, and the like. When HIV patients arrive with cryptococcal meningitis, they are stabilized, given painkillers for the headache, and sent home to die.
After their inpatient rounds, where virtually every bed is full, and after their outpatient clinic, where scores of impoverished people wait on wooden benches, Drs. Leena Thomas and Florence Tleane discuss fluconazole. They want the government to get the best price, but they are caught in devil's dilemmas that American doctors rarely face.
For example, patients with cryptococcal meningitis usually need to be hospitalized for two to four weeks, "but a long stay means taking up someone else's bed," says Thomas. The death rate from cryptococcal meningitis "is quite high despite treatment," notes her boss, medical superintendent Varughese George. "So, should we treat a disease that has a poor outcome or utilize those funds for other patients?"
Tleane says she would refer cryptococcal meningitis patients who are HIV-negative to a better-equipped hospital, because such people stand a good chance of being permanently cured. But in an AIDS patient, the disease is a sign that the immune system is so tattered that the end is not far off. Moreover, to keep the disease from recurring, HIV patients must take fluconazole every day for the rest of their lives. In addition to cost, "compliance is a problem with our patients," says Thomas. "Would they take the pills? I can't say that I'm desperate for this drug. I haven't used it on patients, so I can't say how effective it is in our community," she concludes.
"You're not going to see enthusiasm in doctors who haven't treated people with the drugnot because they don't care but because they don't know," says Achmat, who has HIV himself. "This shows the amount of work we have to do in this country. Treatment literacy, even among doctors, is very bad."
It's worse, of course, among patients. "Since there are no treatments, people are always hopeless," says Selby Sibaya, an openly HIV-positive counselor at Standerton hospital. His colleague, chief nurse Evelyn Moumkawe, agrees. "The minute they know they're positive, they deteriorate fast," she says. "It's psychological. They despair."
Ultimately, this is what the fluconazole campaign is trying to doinject hope into the bleakest of epidemics. That's more than a sentimental gesture. People avoid getting tested, say doctors and AIDS workers, because what can they do if they're infected? And if they don't know they carry the virus, they often are not as careful about protecting their partners. If parents could live an extra year or twowhich has been proven possible even without drugs that target HIV itselftheir children might get a better start in life before being orphaned. Drugs like fluconazole would inspire hope, says Sibaya, "because we wouldn't be saying anymore, 'Go home and wait for your time.' "
Just a few steps away from Sibaya's office, a woman lies panting, even though she is breathing through an oxygen mask. TB is rampant in her lungs, complicated by thrush, a fungal infection that has coated her mouth and esophagus with a white, velvety carpet of pain. More than 40 percent of South African HIV patients get thrush. The woman panting into her mask has it so bad that she can't swallow, not even to drink, yet the disease also gives her diarrhea, depriving her of nutrients and energy. She's being fed intravenously, but if she could eat solid food and didn't have to fight two major diseases at once, she'd have a much better chance of pulling through.
The drug she's been given for thrush, nystatin, is weak and hasn't worked. Fluconazole is the most effective drug, but of course it's not available. And so, says nurse Moumkawe, "she probably won't make it."
Additional articles on AIDS by Mark Schoofs.