Part 8: Use What You Have

Treating AIDS Without Money

Additional articles in this series.

GULU, UGANDA—It's four in the afternoon and Rose Ayo hasn't eaten yet. The 28-year-old mother of five eats only once a day, usually greens mixed with beans or maize meal. She has no job. Her family's food comes from farming a little plot of land and foraging for wild vegetables. Meat is out of the question. Eggs and milk are luxuries she can obtain only a few times a year. Yet one of the key elements of "positive living"—the basic lifestyle changes that enhance the health of people with HIV— is a balanced diet. "That," says Ayo, who found out she was infected when her husband died of AIDS three years ago, "is really hard."

Things get even harder when she requires medical treatment. "Last year I fell sick with malaria and vomiting, a basinful of vomit," Ayo recalls. "Instead of paying rent I bought the drugs, and the landlord chased us away from our house." She fled to her uncle, who gave her and her children shelter in a tent. A year later, that leaky tent is still their home.

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."

Ayo lives in Uganda, the country with probably the best response to AIDS in Africa. Uganda was one of the first places where African AIDS was discovered, among fishing people on the shores of Lake Victoria, and now 9.5 percent of the adults in this country of about 20 million are estimated to be infected. But Uganda boasts some of the continent's most experienced and dedicated AIDS doctors, as well as a renowned prevention program, strong networks of HIV-positive people, and a supportive government. In short, this is a country with everything but money.

So what does AIDS treatment mean in this best of all poverty-stricken nations?

In the industrialized world, powerful drugs called antiretrovirals have sent AIDS death rates plummeting. AIDS hospices have closed, and people with HIV are running marathons and hiking the Appalachian trail. But even at discounted prices, the cost of putting all of Africa's 23.3 million people with HIV on one of the standard three-drug regimens would exceed $150 billion a year. In Uganda, according to one study, such a treatment program would consume more than 60 percent of the country's GDP.

Undaunted, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and a group of pharmaceutical companies are running a pilot project in Uganda that sells HIV drugs at discounts of up to 56 percent. But this program provides antiretrovirals to less than one-tenth of 1 percent of Uganda's HIV-positive population. And many of these lucky patients drive themselves and their families into debt trying to pay for even the least expensive regimens—which often are the least effective.

For the overwhelming majority of Uganda's AIDS patients, the concerns are far more basic. A group of 98 people with HIV, including Ayo, are sitting under two immense trees in Gulu, a city in northern Uganda. Eighty-five say that over the previous year they have endured five or more days without any food at all. "I'm getting thinner and thinner," says Morris Opio, chairman of Gulu Hospital's AIDS counseling organization, Waloko-Kwo. It was in Uganda that AIDS was first dubbed "slim disease" because it wastes people into skin-wrapped skeletons. Opio holds out his spindly arms and says, "I look sick, but it's from no food."

An hour's drive away, in the town of Lira, "We don't have shoes or boots, so we're more likely to get infections like rashes and boils from the grass," says Juliet Awany, a member of the National Guidance and Empowerment Network of People Living with HIV/AIDS (NGEN+). She also worries about diseases, such as worms and dysentery, that are rare in wealthy countries.

But the push for basic medicines has attracted far less attention than the campaign for antiretrovirals, and few if any Western AIDS activists are championing food relief. "It's only recently, I must admit, that I became aware" that hunger was the leading concern among rural Africans with HIV, says UNAIDS director Peter Piot, who spent years working in Africa. Yet across the continent, hunger stalks people with HIV.

Studies from Zambia and Malawi have found that patients often consider food their most important need. The Zambian study also looked at home care and discovered that, when a patient dies, the family mourns not only the loved one but also the end of food aid. Even in Uganda's relatively prosperous capital, Kampala, patients say they often have trouble achieving a balanced diet, with most complaining that meat and fresh fruit are too expensive. As for drugs, Vincent Wandera, who has HIV, says simply, "They write you medicines, you fail to buy."

No wonder veteran AIDS doctor Peter Mugyenyi says that treatment in Uganda "means frustration." Noting that industrialized countries have only a small proportion of the world's people with HIV, Mugyenyi says, "The medicines are where the problem is not, and the problem is where the medicines are not. The reason this cannot be put right is economics. It makes no difference how many die. It's a hard-nosed business decision. As long as we don't have money, they will just ignore us." [See box, "Of Patents and Pills."]

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