One Wednesday morning in February, at the Area 25 health clinic on the outskirts of Lilongwe, Malawi’s capital, an exuberant local nurse named Alice Banda helps Margaret Boniface deliver her second child. The nurse wraps the newborn in a colourful cloth and urges him onto his mother’s breast. Then Banda tries to figure out how to get the baby off to the hospital in time for the newborn-size dose of antiretroviral (ARV) drugs he needs to protect him from his mother’s HIV.
Banda is wearing a starched white uniform and a lacy nurse’s cap that’s pinned to her small black braids. She steps outside and pauses briefly to add her voice to the singing of some three-part-harmony health education songs about breastfeeding, AIDS and birth control. In one song, a village elder warns a young girl named Mary to take care, because there’s AIDS out there. “Aidsie, Aidsie, Aidsie,” Banda sings, along with the other nurses, swaying and clapping. They sound beautiful. Then she steps back inside, into an HIV counselling room, to find out why hunger is haunting Mary Mangani.
Mary is 26. She looks tired and has sores around her mouth. Her fat-cheeked baby nestles in her lap, leaning against his mother’s African National Congress T-shirt. Baby Laurence is now seven months old and he’s still HIV-negative. Mary wants to wean him now so Laurence will remain safe from the virus in her breast milk. But she doesn’t have enough food for her baby at home to replace her milk.
“She’s worried about the baby going hungry,” Alice Banda explains, translating from Chichewa into English. “The baby could be starved, so she’s worried.” Does Mary herself have enough to eat? She does not.
The hungry season
This is the hungry season in Malawi, the three months before the maize harvest when many families go hungry, year after year. Hunger speeds up the progression of HIV, especially in mothers already depleted by the effort of producing breast milk. The World Food Program now donates soy flour and oil to help feed HIV-positive mothers. But the food basket doesn’t seem to be enough.
“A lot of the women I see, they may be eating once a day. Or they may not eat for one or two days,” says Martin Tembo, a Lilongwe nutritionist who works with HIV-positive mothers. “It’s common. It’s very common. They have real difficulty to provide food for their babies, especially when they stop breastfeeding.”
“It’s an awful choice we ask these mothers to make,” admits Dr. Lisa Hyde, an Australian pediatrician who has worked alongside Tembo for several months, caring for the children of HIV-positive mothers. A mother can continue to breastfeed and run the risk of giving her child HIV. Or she can stop, and run the risk that her baby may die of starvation or dysentery or pneumonia.
It’s a choice no mother in Canada has to make. In the developed world, mothers living with HIV are counselled by their doctors – and even required by law – to bottle-feed their babies with formula.
But Malawi is one of the poorest countries in the world. Most Malawians can’t afford baby formula. Even if they could, most homes lack the heating, refrigeration and clean drinking water needed to safely store and prepare formula and sterilize bottles.
Bottle-feeding does protect babies from their mothers’ HIV, but formula can still prove fatal in a region where infants often die of gastrointestinal infections. In one research trial with HIV-infected mothers in Kenya, more of their formula-fed babies died in the first few months of life than breastfed babies. And after two years, the formula-fed babies died at a rate similar to the breastfed babies, even though they had been protected from HIV transmission. So it isn’t surprising that almost every mother in Malawi still breastfeeds her newborn, even though one in five of these women tests positive for HIV.
“Breastfeeding is a sign of motherhood in Malawi,” explains Charity Salima, an experienced community nurse who works with HIV-positive mothers in Lilongwe. “It’s a sign of love to the baby and it’s very much encouraged. Here, women don’t feel shy to breastfeed.”
Indeed, in this conservative country, where almost every woman in the capital city wears a modest skirt down to her ankles, a mother doesn’t hesitate to whip out her breast, fetch a crying child from the sling on her back and nurse her baby or toddler in public. Most mothers breastfeed their children for at least two years.
The World Health Organization (WHO) calls breast milk “optimal nutrition.” Mothers’ milk regulates babies’ immune systems, secretes vital nutrients and antibodies, and protects babies from gastrointestinal and respiratory infections. WHO studies have found that exclusive breastfeeding in the first six months reduces mortality from infectious diseases by a factor of six. But breast milk can also transmit HIV.
Most breastfed babies don’t get HIV from their mothers. But breastfeeding can increase the risk of that transmission by as much as 30 per cent, according to the Joint United Nations Program on HIV/AIDS (UNAIDS). It’s a sobering statistic, because mothers’ milk is supposed to nurture life – not hasten death.
Assessing the risks
More than 2.2 million children worldwide are already infected with HIV. Another 800,000 join that list each year – more than one new case of HIV for every minute of every day, all year long. Most of the newly infected are African babies, who get the virus from their mothers during pregnancy, labour or delivery. That’s why HIV-positive mothers in developed countries take ARVs during pregnancy and deliver their babies by Caesarean section.
Even in Africa, where there are fewer medical interventions, at least 70 per cent of the babies born to infected mothers are born virus-free. If they go on to breastfeed, however, the risk of transmission rises dramatically. Recent studies suggest that risk is highest during the first months of nursing – precisely the time when infants are most vulnerable and most in need of breast milk. But the risk of transmission continues for as long as a baby continues to breastfeed.
For HIV-positive mothers, nursing carries its own deadly risks. That’s partly because producing breast milk depletes a woman’s caloric reserves, especially when that woman isn’t getting enough to eat. A 2001 Kenyan study, published in the Lancet, found that HIV-positive mothers who breastfed for several years were three times more likely to die than infected women who fed their babies formula. Furthermore, the death of those mothers led to an eightfold increase in the death of their young children.
Given this deadly toll, astonishingly little research has been done about how to make breastfeeding safer. A 2002 WHO meeting on maternal child transmission noted that “pregnant and lactating women are not generally considered a target group for efforts to prevent HIV infection.” As one group of researchers put it, the effect of ARVs on lactation is “completely unknown.” There have been no randomized clinical trials to determine if the drugs are safe during breastfeeding or if they can protect nursing babies from the virus.
Now, finally, that is changing. Twenty-five years into the AIDS epidemic, with the future of Africa’s next generation at risk, donors and researchers and drug companies are finally turning their attention to breast milk.
The BAN Study
Alice Banda, the singing nurse in the white uniform, is part of this urgent undertaking. She will help Mary Mangani wean baby Laurence. Nutritionist Martin Tembo will provide Laurence with a newfangled peanut and milk supplement designed for Malawian babies who are weaned early, but don’t have enough food at home. His mother may get a nutritional supplement too. Dr. Lisa Hyde will monitor Laurence to ensure that he remains HIV-free. And community nurse Charity Salima will fetch Margaret Boniface and her newborn son from the Area 25 clinic and take them in a blue truck down to Bottom Hospital for a baby-sized dose of ARVs.
The babies, their mothers and the health professionals are all part of a clinical trial now underway in Lilongwe. Researchers with the Breastfeeding, Antiretrovirals, and Nutrition Study are trying to determine how to make breastfeeding safer amid HIV and hunger. They’re looking for answers in mothers’ milk and babies’ blood.
The BAN Study is the largest of its kind in the world and the furthest along in its research. Its American funders include the National Institutes of Health and the Centers for Disease Control and Prevention. It’s headed by one of America’s most experienced AIDS researchers, a professor from the University of North Carolina’s Medical School. Dr. Charlie van der Horst is new to Malawi. But back home in the United States, he spearheaded many treatment advances through the country’s largest AIDS clinical trial unit, a research unit he helped establish. He believes treatment studies help shape government health policy. And he has set up outreach clinics and treatment protocols to provide better medical care to poor, rural AIDS patients in the United States, many of them African American and most without medical insurance.
Van der Horst considers himself a doctor, a researcher and an activist. He has been treating AIDS patients since the start of the epidemic. “In the beginning, those attracted to the field were idealistic. They believed in equality,” he says. But in recent years, the doctor grew disenchanted with a research agenda set, he says, by large pharmaceutical companies interested in “well-to-do white men with health insurance.”
But van der Horst discovered kindred spirits at an international AIDS conference in Durban, South Africa. There, he watched as Africans with AIDS protested and sang that they were dying while the world stood by. Now, with a team of Malawian staff and a rigorous research program, van der Horst hopes to prevent some of those deaths. And almost 1,200 HIV-positive women and their HIV-negative babies have signed on, pledging their milk and their blood to the cause.
Several experiments are already underway. BAN Study staff are giving ARVs to the mothers or to their infants for the first seven months of breastfeeding, to see if the drugs will block transmission of the virus through breast milk, and to see if they’re safe. As that course of ARVs comes to an end, nurses are helping mothers wean their babies early. And the nutritionist is providing the locally produced milky peanut butter for weaned babies to replace some of the nutrients and calories they once got from breast milk. There are nutritional supplements for some of the nursing mothers to keep them from wasting away. There’s a support group for husbands and fathers. And counsellors and peer groups are helping the mothers stand firm against angry partners, disapproving relatives and even nosy neighbours who assume a weaned baby means a heartless mother or a woman with AIDS.
Mary Njaidi is a young-looking mother of three who brings Macdonald, her chubby baby with huge, warm eyes, to the BAN clinic. She says her husband is very supportive and agreed to help wean the baby. But she is still upset at how her sister-in-law reacted. “She was suspicious,” explains Mary through a translator. “She wondered why I don’t breastfeed the baby. Then she started telling all the other women that I’m not breastfeeding, that I’m going to the BAN clinic.” But some happy news has diminished Mary’s sense of shame. Baby Macdonald is HIV-negative. “I feel so good about it,” says his mother.
The blue truck and Bottom Hospital
The BAN study’s blue truck crosses a bridge over a thin, muddy river. The bridge is jammed with pedestrians heading toward Lilongwe’s Old Town market, or the mosque, or the hospital. Two kids in dirty rags are banging drums for money on the bridge. The traffic is chaotic, the drivers aggressive. But every time a vehicle signals a turn into Bottom Hospital, the oncoming traffic stops right away. “They think you’re in labour, that you’re about to have a baby,” jokes Charity Salima, the community nurse. Indeed, ten thousand babies are born at Bottom Hospital every year. Two thousand of those babies have mothers with HIV.
Bottom Hospital got its name during the colonial era, when white, British residents had their own affluent teaching hospital at the top of the hill. Bottom Hospital was at the bottom of the hill, near the river with its malarial mosquitos. Bottom served the local black Africans. And Bottom still doesn’t get a lot of respect. This year, when police cracked down on vendors in the market, tear gas wafted through Bottom Hospital’s narrow halls and dirt yard.
When it rains, the red soil between the small concrete hospital blocks is slick and slippery. People wearing white masks sit outside the TB clinic. Families of patients squat in the dirt outside, washing clothes and bedding in plastic buckets and drying them on the ground.
The arrival of the BAN Study has turned parts of Bottom upside down. Seventy people are employed to work on the study, and there is a flurry of activity in the very modest but new facilities: BAN lab, the new BAN pharmacy, the new BAN treatment rooms, and even the BAN data collection centre, piled high with stacks of patient files.
More importantly, the requirements of meticulous, ethical research and the largesse of foreign donors means the women in the BAN Study get free, full-service health care that’s not available to others in this cash-strapped country. At least for a short time, these impoverished mothers and their hungry infants are receiving high-quality health care, drugs donated by big pharmaceutical companies, free lab tests and HIV monitoring, an extra flour ration for their families and bus fare. The BAN Study’s coordinators are well aware of the contradictions and the ethical dilemma of using “resource-intensive methods in a resource-limited international setting.” But they hope the results of their research will change forever the way Africa cares for its infected mothers.
Every day, these women crowd the narrow hallway of the BAN clinic in their Sunday best. They sit on stone benches and wooden chairs with their babies on the floor or on their lap or at their breast, and they chat and wait for the nurses to call them in to tiny examining rooms and cramped cubicles. The women leave with their hands full of tiny, baby-sized syringes of ARVs, or plastic-wrapped adult doses, or small jars of sweet, milky peanut butter. They pack these into flour sacks they’ve brought along or empty condom boxes from the hospital, adjust their babies on their back and head for home.
AIDS is real – and hunger too
It is smoulderingly hot in Lilongwe. Malawi’s capital city is a strangely pastoral mix of shiny new gas stations, tiny maize fields, monumental government buildings, concrete strip malls and village-like townships, with long, lonely stretches of wild, green bush in between.
Under one shady tree, an entrepreneurial woman in a clean white shirt has set up a telephone on a table in the dirt, the telephone loosely connected to the phone line overhead. A boy with his chin burned into his chest and a thin woman with a baby on her back and a man with one eye hanging out like an overcooked egg are begging. Young men are trying to sell avocado pears and broken flashlights and gas coupons and handicrafts from Kenya and deep-fried balls of maize. A man wearing shoes like mittens crosses the road on his hands and knees, alongside people with clear faces and well-pressed clothes who are carrying umbrellas.
The roads are thick with four-wheel-drive SUVs, whizzing aid workers and foreign delegations and visiting young journalists down red soil tracks through the maize fields to meet villagers who have eaten but one meal that day, to talk with mothers who say their breast milk is drying up. The land rovers speed through villages, dodging women hiking to town with their babies slung on their backs, past roadside stands selling corn cobs grilled dry and black and delicious. Occasionally, one of these big foreign cars may narrowly avoid hitting a small child in a yellow T-shirt. Every once in a while, in this rush of foreign aid, a local carrying firewood or a twiggy bouquet of radish root on their bicycle may be nudged off the road onto a highway shoulder of rough rocks. Along the road, there are billboards for cell phones, and little roadside flags with African shields, promoting condoms.
At dusk, at the city’s Nature Sanctuary, a teenager guides visitors through a tiny zoo with cages of monkeys, crocodiles and hyenas. A trail leads further down into the bush, where wild hyenas roam free. A large sign at the trail head warns, “No Lovemaking in the Nature Sanctuary. AIDS is real.”
And hunger is, too. A newspaper headline reports the rape of a 13-year-old girl by a stranger who offered her several cobs of corn.
The local newspaper also reports a controversy over the use of ARVs during pregnancy and their effects on unborn children. “Nevirapine debate rages on,” reads the headline in The Nation. “Unless people are told the truth, speculation and fears will hinder the fight against the pandemic.” A rival newspaper prints what appears to be a government press release: President Bingu wa Mutharika “recognises the enormity of HIV and AIDS as an economic, social, cultural, and political and developmental challenge, which is house hold based.”
The lingering stigma
By day, in the squalid township of Chinsapo, a bar girl with short hair and a red tank top leans into the BAN Study’s blue truck to offer her assistance, exposing the stretch marks on her breasts as she does. Although it’s still morning, some men are drinking by the side of the main dirt road.
Charity Salima and another community nurse are in the truck’s back seat. They’re trying to pay home visits to some mothers from the BAN study – women who have missed an appointment or haven’t taken their drugs or whose babies need more bloodwork. The nurses are disguised in plain clothes. They tell neighbours they are aunties on a visit, that they’ve come to see the new baby. And they leave their driver and the BAN Study’s truck several blocks away, because people now associate the blue truck with AIDS work. Stigma still lingers around this disease, and the nurses want to preserve their patients’ privacy.
But on this visit, coughing barefoot children follow them from the truck, over puddles and into a smoky, narrow alley between small block huts. The woman they are looking for is out searching for cassava. The last patient, in Piasan, was out looking for firewood. By the time the nurses return to the truck, another young woman with an afro pick is leaning into the cab. “She had a baby with a man who went away to Blantyre,” the driver explains as they pull away. “She told me, ‘I will do anything to help the baby. Anything.’”
On the way back to the hospital, the blue truck passes a billboard for an American food company. The ad says: Every Meal Tells a Story! Farther along, a tall, wide billboard displays a huge portrait of the President and a big red ribbon. It says: Time for action against HIV/AIDS. From now on it must be abstinence, abstinence and more abstinence.
It seems an oddly prim and irrelevant imperative, since so many Malawian women are infected by their husbands during procreative sex, and then pass the virus on to their children. Most of the women in the BAN Study discovered their infection while they were pregnant, because the government now offers free prenatal HIV testing. There is no such rite of passage – and no mass testing – for Malawian men.
The study’s counsellors encourage the women to reveal their HIV status to their husbands. The BAN staff will even invite husbands into the clinic for a chat. But there can be serious consequences to HIV disclosure, says BAN’s Malawian research coordinator, Charles Chasela. “In some cases, this can lead to violence, to domestic violence, or even abandonment. Some marriages are broken up.”
Chasela says what’s happening in women’s homes – whether it’s nagging hunger or a traditional husband – will play a major role in whether they are able to wean before the baby contracts HIV. “If the baby is crying, the husband might get angry and ask, ‘Why are you not breastfeeding the child?’” explains Chasela. “But the woman must make her own decision. If she knows the risks, she has to take a stand.”
The milk is always there
The women who are part of the BAN Study are HIV-positive, but they do not yet have AIDS. Many of them still look radiant. Their babies are often fat and alert. These mothers say they hope their babies will remain HIV-negative, that they will grow up to go to school and become educated and help their country. But HIV is just one part of the story in Malawi.
“No mother wants their baby to have HIV. No mother anywhere in the world wants their baby to be sick,” says Dr. Hyde, the BAN pediatrician, who is a new mother herself. “So these mothers are relieved when their kids are HIV-negative. But I think it’s a real struggle for them, because they’ve got another four or five seasons of rain and malaria and bad pneumonia and malnutrition before their child is out of the woods. We might see it as, ‘Wow, that’s the big threat out of the way.’ But here, HIV is just one hurdle. There’s so many things their baby has to survive, to get through those first five years.”
One morning, there is a very thin mother sitting on the floor of the hospital with a tiny baby in her arms, a baby who does not move. The mother is HIV-positive and says she has nothing to eat. She motions with her hand toward her mouth. Her baby is wearing a yellow wool hat in the stifling heat. Dr. Hyde says he has severe pneumonia, a viral infection that’s making the rounds. “At the end of the day, it’s not about medicine,” says Hyde. “It’s about poverty. And some days that’s a bit overwhelming. There’s some days you think, I can’t go back in there.”
But she does. And so does Charles Chasela. “We don’t cry,” he says. “We’re used to it.”
An interim analysis of BAN Study data is already underway. The final results won’t be known until at least 2008. But the study’s Malawian coordinator has hope. “Anecdotally, from what we’re seeing right now, it’s working,” says Charles Chasela, “For those infants or mothers that are on the drugs, it’s working. There are quite minimal numbers that are ending up with HIV, compared to before.”
Susan Malunga sits in a BAN clinic treatment room. The 25-year-old with long braids and a purple batik dress looks regal, almost out of place. Her son, Peter, is old enough to be weaned. And she wants him to remain HIV-free. But she’s worried, and the community nurse translates her fears into English. “She’s having some difficulties. She feels herself hungry. And she’s looking at the hunger situation which has roamed in the country. She thinks, ‘Is the food going to be enough for the baby?’ Her hope is that after next month, the people will be harvesting, so maybe she will have enough food.”
Is it hard for Susan to breastfeed when she is hungry? “With God’s Grace,” says Susan, “the milk is always there.” And she smiles.