Treatment trials and tribulations: Will the sun shine on HIVers in Uganda?
Many of the faces in the photographs now have crosses penned on their foreheads. "That means they're dead. Dead, dead -- everybody's dead," mutters Milly Katana, fingering a dusty but revered family album. Outside her auntie's hut it's the rainy season in Uganda. But the sun is having its way, emphasizing the vibrant green of the banana trees, which spread broad roots across the fertile paprika-red earth where Katana's relatives lie buried. For her, as for most Ugandans, AIDS is a family affair.
Katana takes off the spotless shoes that she daily scrubs mud from before going in to sit with her ailing aunt on the floor of her one-room home. A sturdy 31-year-old single woman, Katana seems wise beyond her years. An accountant by trade, she is driven, but her seriousness is offset by a generous sense of humor. Still, she can't look at the memory book without being reminded of why her own picture isn't included. HIV positive herself, Katana is one of the lucky ones.
The mere fact that Katana is on a HAART regimen separates her from most of the 2.4 million other Ugandans living with the virus in this East African nation of 21.5 million. She's also a celebrity of sorts, an outspoken leader of the National Guidance and Empowerment Network (NGEN), one of several networks for HIVers. Katana's commanding presence is hard to ignore. And right now she is angry. Her government has not subsidized a single dose of HAART -- and yet her country is lauded as a rare Third World model in the fight against AIDS. "When you hear all the praises about what Uganda has done, and every day we are confronted with friends who die, you want to turn tables upside down," Katana says.
During the early '90s, Uganda had one of the world's highest rates of HIV. In an unprecedented prevention achievement, the country dramatically reduced infections in urban areas from a high of 30 percent in 1992 to 10 percent in 2000. But now a new dilemma is pressing. A hard rain is falling on the seeds sown by international donors. When it clears, will Uganda, with its skeletal health care system and anemic budget, be able to provide antiretroviral therapy on a national scale?
Blessed with fertile soil and lush greenery, Uganda -- bordering Lake Victoria, the source of the fabled Nile River -- is the picture of paradise. Winston Churchill dubbed it the Pearl of Africa. With a stable government and increasing infusions of foreign aid and investment, Uganda also has one of the fastest-growing economies on the continent. But there's an ominous underside. Some three decades of civil war have left almost half of all Ugandans earning no more than a dollar a day, usually from subsistence farming. Infant mortality is more than one in 10; one in four children suffers from malnutrition. For those who survive childhood, life expectancy is short: 42 years (AIDS whittled it down from 48).
Ugandan President Yoweri Museveni, who took office by force in 1986, has shown the same aggression in fighting AIDS as he displayed routing Milton Obote's military regime. After all, he personally witnessed members of his guerrilla army wasting away. Under his leadership, HIV prevention became a battle cry, and for the first time in Uganda, sex and its consequences were discussed openly, from roadside billboards to village teach-ins. This impressive commitment -- and even more impressive results -- attracted international scientists and donors, who have turned Uganda into a laboratory for groundbreaking clinical research and pilot programs.
Nevertheless, access to AIDS meds is, at best, catch-as-catch-can. Technically, Uganda's state-sponsored health care system provides free drugs like co-trimoxazole for PCP and other opportunistic infections, but in reality they're often unavailable. Of course, a doctor could write a prescription for a patient to buy HIV meds in a pharmacy, but even if they were available, with an average annual per capita income of $330, few Ugandans can afford them.
At Mulago, Uganda's biggest and best public medical facility, treatment for even minor conditions such as thrush is spotty; rusty lumbar needles and a dearth of latex gloves send doctors scurrying to hide scarce supplies in their
lockers. Drugs for more insidious infections are too expensive. "With crypto we really have a problem," Mulago physician Moses Kamya says. "Patients have to buy fluconazole. If they can't, we give them painkillers."
More typical is Pallisa Hospital, located in a farming district on the Kenyan border. Its chipped pale-green walls encompass empty rooms, and shelves stand bare but for the minimal necessities. To get there, PWA Agnes Oputo must travel 11 miles. On days when she has money, she hires a boda-boda, or moped, to take her. But when broke or too weak to dig for vegetables to eat, Oputo relies on her community. "I can ask a kind person to give me a bicycle," she says. "Then I can ask another kind person to ride me there." There's no hint of anger at this Herculean effort to get to the hospital, just a gentle acceptance of one of life's many daily burdens. Before setting off, she adds softly that her vision is failing, but she is too poor to afford glasses.
Intermittently there are glimmers of hope on the treatment front. In 1998, UNAIDS and the pharmaceutical industry came up with the Drug Access Initiative, which was intended to provide many Ugandans with brand names at a discount. The plan fell short, however, when cost remained too high. Since then, HAART prices had fallen within reach of those who are relatively well-off, such as small-business people and successful farmers, thanks in part to Dr. Peter Mugyeni, a maverick physician at the Joint Clinical Research Center in Kampala, who treats 5,000 paying patients. Double-fisting the phones, Mugyeni pits generic and brand-name drug makers against one another to lower prices even further. Now a month's supply of triple-combination therapy is down to $40 (compared to about $1,250 in the U.S.). "We have demonstrated that people can be trained to use the drugs," says Mugyenyi, countering the myth that Africans are too unsophisticated to adhere. "My efforts have served their purpose, but it's not sufficient." He wants to see all Ugandan HIVers receiving state-of-the-art care.
Katana must improvise to procure her meds. "I get them as recycled drugs from friends all over the world," she says. Katana's role in global HIVer networks has won many fans who know her regimen and keep an eye out for spare drugs. "Once I had two months' Viracept left, and Viracept here costs close to $400 a month," she says. "My heart -- pow! pow! pow! -- went pumping, so I wrote an e-mail to a colleague in Paris, who managed to get me four months' supply."
Cissy Swaana, a 42-year-old widowed mother with AIDS, hails from the hard-hit district of Rakai, on the banks of Lake Victoria where African AIDS was first discovered. A nurse, Swaana has been immersed in the epidemic for her entire adult life. She recalls well the day 10 years ago when her husband returned from an extended business trip in Botswana. "I had seen AIDS in the hospital where I was working," she says. "When I saw him, I knew he had AIDS. Something in me knew."
Swaana struggles alone to raise her two teenage daughters and son on a salary of $142 a month. She faces the choice between meds for herself or an education for her children. "My salary is eaten up with school fees for one child," she says. "I can't really tell you how I pay it. Somehow, somewhere, someone always gives me a lend." Down to zero CD4 cells, Swaana still puts in long days at work. To boost her income a bit, she raises chickens and rents out the front room of her two-room house. "I've already been to one school to beg for them to allow my daughter to stay. I told them I am HIV positive," she says. "The headmistress has been very helpful." But the other daughter has been sent home for nonpayment. "When they have a foundation where they will get school fees, I will die happy knowing that they will go to school," Swaana says.
With so many adults doomed to an early death, Uganda's greatest hope lies with its children. Currently there are almost 1 million AIDS orphans. Many are left to fend for themselves in child-headed households. However, there has been a mushrooming number of new organizations providing food, clothing, school fees and, in times of plenty, even a goat to raise. These nationally recognized networks are essential in battling stigma as well as offering support and sanctuary to adults with HIV.
In addition, buzz about Uganda's new mother-to-child-transmission prevention program (MTCT) began to grow last fall. With the help of Boehringer Ingelheim, the German maker of nevirapine (Viramune), a handful of pilot programs were launched in clinics, and the government plans to take the program nationwide by 2004.
Irene Nakimuli is one mother grateful for MTCT. After the death of her first child, Nakimuli and her husband learned that with the help of AZT they could try for a second, healthy child. Born nine months ago, Joy has tested negative twice. Nakimuli was given six months' free infant formula so that she wouldn't pass the virus on through breast-feeding. But this is no easy feat. Ugandan culture dictates that a woman breast-feed; scorn and stigma often force a baby off formula and back to the breast. Economics also intervenes. "The formula made her so big and healthy, but after six months I had problems," says the unemployed Nakimuli, who struggles daily to find food for the baby.
Still, Joy is aptly named, for her serostatus is a triumph in Nakimuli's life, which is otherwise fraught with complications. Her husband has a small plot of arable land, but he lives there with his other wife, who is HIV negative. "I don't know if she knows that I am positive. I can't tell her," Nakimuli says. "Maybe it is for the husband to tell her."
Nakimuli has already lost her father to HIV. Her mother is ailing and broke, but Nakimuli is unable to fulfill the Ugandan tradition of adult children caring for their aging parents. "I have no money to send her," she says tearfully. "She has nothing to eat. I don't know what I can do."
Yet the fact that Nakimuli could access MTCT at all was lucky. For other mothers-to-be, delivery has been slow: international Monetary Fund (IMF) structural adjustments imposed a hiring freeze on all Ugandan civil servants, including Ministry of Health staff. Nevertheless, Dr. Saul Onyongo, head of the ministry's AIDS Control Program, sees MTCT as the thin edge of the wedge to universal HAART. "If the women enter at the level of MTCT, the cost of HAART will not be exorbitant because the majority of these mothers are still asymptomatic," he says. Once in the system, the women and their families will be monitored -- and given HAART when they get sick. Onyongo allows that playing God by restricting HAART to pregnant women, their partners and children troubles him. But, ever the pragmatist, he says, "If you wait for things to be perfect, you can't do it."
Across the country, the clamor for drugs is growing louder. In Pallisa, three hours from the capital, a member of a national PWA network stands before a crowd of villagers explaining that nevirapine will be coming to their hospital "at some point in the future." Suddenly a tall, old-looking man hobbles forth and vehemently declares that she should not come to speak about medications "in the future." Pointing to his infected foot, he shouts, "We need the drugs now!"
Currently, Uganda has seven antiretrovirals under patent. Given the World Trade Organization's new declaration allowing poor nations to bypass patents in the case of a public health crisis, the nation can soon cash in on low-price generics from India. Further down the line is the prospect of Uganda manufacturing its own generic drugs.
Although the Ministry of Health is celebrating the advent of generic drugs, Ezekial Tuma, a lawyer, worries about pressure from Uganda's business sector. "The government right now has a policy of encouraging foreign investment in Uganda," he says. "There are elements that don't want to appear unfriendly to big business by not recognizing patents."
But Mugyeni has already done the math. He calculates that the cost of combo therapy can drop to as low as $12 a month and still be profitable for drug makers, whether generic or brand name. "Infrastructure is not preventing us from using HAART," he says. "Cost is."
Yet Laura Guay, a leading MTCT researcher from Johns Hopkins University, is wary. She believes that going forward too quickly with HAART may be "reckless." Working with colleagues at Mekere University in Kampala, she says she's seen too many donated drugs expire on the shelf because "the existing structure can't handle what limited things it does. The staff are overworked, underpaid and struggling to do basic care to keep people alive."
Meanwhile, cash cows like Pfizer and the Centers for Disease Control and Prevention have launched pilot treatment HAART programs. Research partnerships with universities such as Hopkins and scrappier organizations like Médecins Sans Frontières also abound. Their success will certainly help the government make a case for universal HAART, but it won't overcome the IMF-imposed hiring freeze. And what happens if donations dry up? How will the government foot the bill?
Onyongo is proposing a best-of-both-worlds approach, with a Strategic Health Care Plan that covers HIV but also includes such essentials as clean water, sanitation, malaria and immunization. He's appealing to donors to put funds into a central Ministry of Health "basket." While millions of dollars pour into the country for random projects, there's no master plan -- and the Ministry of Health remains penniless. Onyongo's plea is that the money go to the government, which can then coordinate a national plan. "Cheaper drugs and a fortified health-care system -- that's the agenda."
But the best-laid plans will not get money to Cissy Swaana fast enough to keep her alive and her kids in school. Agnes Oputo, too, must brave another day of digging for food. But bolstered by her sister-in-arms Milly Katana, she has recently joined the fight, educating others and urging them to add their voices to the growing din for treatment. "The future is dependent on the international community to increase resources for treatment in Uganda," Katana says. "We have a lot of work to do."
UGANDA IN BRIEF
Population: 21.5 million
HIV Prevelance: 9 percent (down from 30 percent)
People with HIV: 2.4 million
People with AIDS: 900,000
Orphans: more than 1 million
Health care access: 50 percent
Births accompanied by health personnel: 38 percent
Women accessing MTCT programs: less than 1 percent
Average annual income: $330
One year HAART: $480
Life expectancy: 42 years