Part 8: Use What You Have

Treating AIDS Without Money

Speaking in early September, David said he had already been forced off his drugs. He was two months behind on the rent for his family's two-bedroom apartment. He had cut their meat consumption by 60 percent. And now, his children's school fees were coming due. Did he have the money? He smiled ruefully and shook his head. "If I had it I would buy drugs. I wouldn't think of school fees when my life is at stake."

Out of Uganda's estimated 930,000 people with HIV, only 852 are receiving antiretrovirals through UNAIDS, according to the most recent figures. About three quarters of them are taking only two drugs, not the usual three, and most of those are taking AZT and 3TC, a regimen considered substandard in the United States.

Rose Byaruhanga is chief counselor at the clinic where David gets his drugs. A motherly woman, she knows her patients intimately. "Most are paying with their savings," she says. "When you look six or eight months down the line, there's no way they can afford it."

Elly Katabira has been treating people with HIV since the beginning of the epidemic. He copes by blocking out everything except "that patient sitting in front of me."
photo: Mark Schoofs
Elly Katabira has been treating people with HIV since the beginning of the epidemic. He copes by blocking out everything except "that patient sitting in front of me."

As for David, "I lie in my bed, but I can't find sleep. I make calculations on how I can get this money. I look at one option, then at another option. I go to bed at 10:00, but I fall asleep at 3:00 or 4:00. I just lie there and think."

PETER NSUMUGA ALSO WORRIES ABOUT money. He runs Uganda's Sexually Transmitted Infections (STI) Project, which provides drugs not only for STIs, but also for common AIDS opportunistic infections. But the Ugandan government puts up only 5 percent of the cost, and the program is due to expire next year. "If nothing replaces it," says Nsumuga, "it would leave a big gap." Spurred on by the International Monetary Fund, Uganda now requires patients to pay for many medical services, including drugs. Could this revenue raising scheme pay for the medicines? "Very unlikely," says Nsumuga. "These drugs are damned expensive."

That's one reason Africans with AIDS usually don't go to the hospital until they are at death's door. Josca Lalaa lives in one of the crowded displaced-persons camps that dot the countryside around Gulu, which has suffered many years of civil strife. Such camps are not unusual in Africa, with its 3.2 million refugees. In December 1996, Lalaa started coughing up blood, but she didn't seek treatment for six months.

Lalaa was suffering from tuberculosis, one of the most common AIDS-related illnesses. But if she starts coughing up blood again, she might not get a bed at Gulu hospital. The TB ward used to have an annex—a tent that held half the TB beds. But ants ate away at the cloth, the ropes, and even the wooden poles. By last year, when the hospital surrendered to the inevitable and took down the tent, its floor was in tatters, exposing patients to the bare earth.

Over the last eight years, TB cases in Gulu have quadrupled, thanks mainly to HIV. But there is no money for a new tent, so the TB ward admits only the sickest patients. It runs at 150 to 170 percent capacity, with patients sleeping on the floor.

Charles Odonga is the main AIDS doctor at Gulu Hospital. He explains that because patients keep flooding in, the hospital has limited their stay to two days. "If they go beyond two days, they are occupying someone else's place," he says. "So we push them out." Many patients don't bother to come at all, he says, "because they are aware of what we can and can't offer." And when those who are on the ward sense that death is near, they or their families often ask to be discharged. "They reason, 'Let's use money we still have for transport home, because it's cheaper when the person is still alive than it is to transport a dead body.' "

Odonga came to Gulu specifically to work with HIV patients, and "there are specific incidents where you give a patient a few extra days," he says. "But sometimes I wonder, should I just resign and go? Am I doing anything?"

Odonga has been at Gulu for less than a year, so the shock of "the limitations of the place" is still new. Not so for nurse Florence Opoka, who opened Gulu Hospital's HIV counseling unit nine years ago. Two years later, in 1992, she wanted to quit. "There was no drug," she says. "I could only help you to the grave." But as patients get weaker, she says, "they become closer to me. They come to my house, and when they die, they leave wills. They even leave me their children." Opoka is raising four orphans from four different patients.

Has Opoka seen any significant improvements in AIDS care over the last nine years? "No," she says, looking away. Then she explains: At the moment, the hospital doesn't even have medicine for bilharzia, a common water-borne parasite, and it has also run out of a key malaria medicine. But what hurts the most is that food donations to her organization were cut this year. Virtually none of her patients has enough to eat.

Still, like Elly Katabira, she uses what she has. "I open my home," she says. "If I have millet or bread, I share the little I have."

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