Part 8: Use What You Have
Additional articles in this series.
GULU, UGANDAIt'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.
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 regimenswhich 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."]
As Africans struggle to sort out their agonizing treatment prioritiesfood? clean water? basic medicines?they must also cope with the emotions that arise with an endless tide of deaths that they now know are preventable. "It was easier when there was nothing at all to treat HIV," says Lillian Mworeko, an HIV-positive school teacher and member of NGEN+. "Now there is something, so it's like seeing food when you're starving, but you can't eat."
ELLY KATABIRA COPES BY BLOCKING OUT everything except "that patient sitting in front of me." Katabira founded the AIDS clinic at Uganda's flagship Mulago Hospital in Kampala and co-wrote Africa's first manual on HIV care. In that book, he laid out his philosophy: "Use what you have."
Through extensive research and observation, Katabira and his colleagues have tweaked medical care. Thrusha painful fungal infection of the mouth and throatafflicts virtually every HIV patient, making it hard to eat because of the pain of swallowing. The cheapest treatment is nystatin; Ugandan doctors found that sucking the tablets rather than swallowing them gets more of the drug absorbed into the tissues of the mouth, making it more effective. Skin rashes are also extremely common among HIV patients. "There was a tendency to look at the skin alone," Katabira says. But if the rash is bad, he prescribes a sedative. "It allows the patient to relax and sleep, so he's refreshed and able to make himself active, which in turn means he's less likely to scratch."
"What I think is most important," he continues, "is supportcounseling and reassurance that, yes, you are sick, but there are a lot of things you can do to improve your living without medicine. Simple things, like reducing your alcohol intake and going to the doctor as soon as you feel sick. And dealing with dependents. A parent will never get better if she's worried about her children. These things are considered second-rate, but I think they're very important."
The ultimate proof: "Our patients are living longer. I'm proud of that. Without protease inhibitors, they are living longer."
Yet the hard reality is that without such advanced drugs, the virus keeps replicating, slowly destroying the immune system. Almost all the infections that result can be treatedin rich countries. But in Uganda, says Katabira, "if you get CMV [a viral infection that blinds and kills], that's the end of the story. The drugs are just too expensive." Same for cryptococcal meningitis. What's more, CMV and the main AIDS pneumonia PCP are both preventablebut not with Third World budgets. The painful genital sores of herpes simplex, which most Ugandan HIV patients get, are easily controlled with acyclovir, but Katabira reckons that "less than 1 percent of my patients can afford it."
"Many people think that because I'm in the field of AIDS, I look at it as something special. No," Katabira says. "The problem is wider. I go to the pediatric ward, and kids are dying because there's no amoxicillin," a basic antibiotic. "I could have walked away in protest, but I must do each and every thing possible to get my patient through the next day. Use what you have."
PATRICK OKELLO, A TALL HIV-POSITIVE patient living in Lira, has the mango tree. He boils its roots, which helps him fight diarrhea. Many people go to traditional healers to get herbal remedies. Indeed, up to 85 percent of Africans consult healers, not surprising given that they are far more plentiful than physicians and that they hold an esteemed position in most African cultures.
Western doctors have tended to dismiss their efforts. But in Uganda, some of the first evidence emerged that herbal remedies can effectively treat AIDS-related illnesses. A study of patients with chronic diarrhea or herpes zoster found that those treated by traditional healers fared slightly better than those given Western medicines. Studies in Zimbabwe and Senegal have confirmed that some traditional treatments work against some illnesses, especially diarrhea. And healers can make a patient feel cared for, an important psychological boost.
Unfortunately, there is no way to tell who is a charlatan, or even which remedies given by a well-meaning healer are truly effective. Awany, the woman who wishes she had shoes to protect against rashes and boils, went to a traditional healer for diarrhea; the herbs he gave her only worsened the problem. "When I told him it didn't work, he said it was washing out the stomach to wash away the germs. I was almost at the dying point when I went to the hospital." But over in the next town, Rose Aciro swears by the thrush treatment she gets from her healer.
Most Ugandan healers claim to alleviate opportunistic illnesses, but only a few profess to cure AIDS itself. Not even antiretrovirals can do that, but they do keep the virus in check, which is why David wants them. This January, the trim, articulate partner in an advertising and media firm, who asked that his real name not be used, started triple combination therapy through the UNAIDS program. Including all the laboratory tests, the treatment costs him between 8 and 9 million Ugandan shillings a year, or about 6250 U.S. dollars. That would have been bearable last year, when his company landed a one-time windfall contract and David took home about 20 million shillings, or $14,000. But this year, he says, "I won't make half of that."
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."
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 annexa 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."
Of Patents and Pills
If David Sekirevu didn't have well-connected friends who could procure drugs, he would be dead. He contracted cryptococcal meningitisone of the most feared AIDS-related illnessesand the drug that fights it, fluconazole, is far too expensive for Sekirevu and the vast majority of Ugandans. But does it have to be?
AIDS activists say no, and point to Thailand. When pharmaceutical giant Pfizer had a fluconazole monopoly there, the price of a daily dose was $14. But when local companies started manufacturing generic versions, the price tumbled to about 70 cents, a 95 percent drop. Thai companies also make generic AZT; the price of that AIDS drug has fallen by almost three-quarters.
Activists want the United States and world trade bodies to allow poor countries to manufacture more life-saving drugs or import them at lower prices. When countries such as South Africa moved to do so, the U.S. threatened trade sanctions. But after ACT UP dogged Vice President Gore, the U.S. backed off.
The fight over drugs called antiretrovirals, which target HIV directly, has generated the most publicity. One company under fire is Bristol-Myers Squibb, which makes the AIDS drug ddI. For a United Nations pilot program in Uganda, Bristol sells the drug for less than $160 a month, a discount from First World prices but still astronomically expensive for most Africans. Activists argue that, because the U.S. government funded the development of ddI, its price should be much lower. Bristol retorts that it purchased the patent from the government and invested in clinical trials, so it deserves to control the price. More broadly, the pharmaceutical industry argues that profits feed new research.
Bristol also points to its AIDS charitable program, launched this year, which will donate $100 million to several African countries. But critics point out that Bristol CEO Charles Heimbold Jr. took home a 1998 pay package of more than $56 million and retained about $200 million in stock options.
Relaxing patent laws is no panacea. Patents for many of the compounds on the United Nations essential drug list have expired, yet distribution remains spotty. In much of rural Africa, only half of children get vaccinations, and only 30 percent have clean water.
The experience of tuberculosis is sobering. Though the disease can be fully cured with relatively cheap drugs, African TB programs have been hobbled by such basic problems as lack of electricity to run diagnostic tests. The continent's crushing poverty breeds "theft of drugs at every point in the distribution system," as veteran researcher Susan Allen recently wrote. Patients, for example, sell their pills as soon as they feel better, even though they are not yet cured. AIDS cannot be cured, and HIV drugs must be taken for life, which means that treating AIDS will have even more pitfalls.
Finally, for many Africans with HIV, the first need is not medicine but food. Elhadj Sy of the United Nations AIDS Program calls the push for cheap antiretrovirals "commendable," but adds, "For people in the West, going hungry is very abstract. They don't know what it is." He draws an analogy to a major effort by the UN years ago to build hygienic latrines in rural Africa. "I remember in one of the villages an old man asked a very simple question. 'My children,' he said, 'don't you think you are trying to solve the problem from the wrong end?' "
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