Weighing Health Risks
by Michael Specter

KAKULU, Uganda — This village is really just a muddy patch of ground in the tall trees near where the Nile flows out of Lake Victoria. The men work on coffee plantations. The women bear children, fetch water from the well about a mile away and cultivate cassava, potatoes and bananas.

There is no running water, no electricity, no telephone. When the long rains come each year, they wash out the dirt road for weeks at a time. This is — and has always been — a place where people who reach the age of 50 are old, and those who have seen a doctor or swallowed a pill are rare.

The basic rules of public health are clear in Kakulu: only drink water from the well, not from the polluted Nile; and breastfeeding is the best way to nourish an infant. At least those were the rules until a few weeks ago, when the United Nations, struggling desperately to find a way to cope with Africa's AIDS epidemic, took a giant step toward reversing them.

After long deliberation, U.N. AIDS officials announced that women infected with HIV should consider feeding formula instead of breast milk to their babies.

Even discussing such a fundamental shift in public health policy has been agonizing for people who once staged protests in the United States and Western Europe warning using infant formula in the Third World — where dirty water is often lethal — would kill thousands of children each year.

Switching to formula would affect the basic behavior of millions of women, and in theory at least, it makes sense. Three million children have died from AIDS since the epidemic began, and last year alone there were more than 600,000 new cases among babies, many of whom received the virus from the milk in their mother's breast. Had they been drinking uncontaminated formula instead– or had their mothers taken a short course of AZT to protect them just before delivery — more than a third might have been saved.

But here, where theory quickly fades into the harsh reality of the jungle, the math never seems to add up the right way. In African villages there is no debate between breast and bottle and no talk of using a drug like AZT. Instead, there has been a simple discussion about who will live and who will die. Scarce funds make drug treatments that have become routine in the United States almost impossible to contemplate here. So people infected with the virus die, and usually they die quickly. That makes prevention the only hope for this continent — where 30 million people have already been infected and 10 million have died.

Feeding formula to babies whose mothers have HIV could save tens of thousands of children each year. So could providing a short course of AZT, which prevents the AIDS virus from multiplying rapidly in cells, to a woman in her final stages of pregnancy.

It may sound simple. But nothing about AIDS here ever is.

"I would never be able to feed my baby with formula," said Margaret Birungi Nannyongoi, a slightly overwhelmed 20-year-old woman who sat on the mud floor of her home, nursing her three-day old child, Dorothy Nalule.

Dorothy is her third daughter – the first died, the next is a listless, underweight two-year-old with flat, black eyes and a constant cough. Dorothy, frail and pretty in a tiny cotton baby dress, was delivered with the help of friends, on the only mattress in the house.

Like at least 95 percent of Uganda's village women, Mrs. Nannyongoi has no idea whether she is infected with HIV. She has never had prenatal care, nor has she ever taken a blood test. She only knows about HIV because it killed two of her brothers. The cost of formula for one child — when it's available in Uganda and when there is clean water to mix with it — is on average 1.5 times what a village family earns each year. Mrs. Nannyongoi said she has never seen anyone use it.

"It seems so difficult to handle," she said, after hearing what is necessary to keep formula safe for babies. "How would I have the time?" She is currently feeding her baby 10 times a day, and each of those days is filled with essential chores.

Even if the formula were donated and delivered to her home, as U.N officials hope it would be, she says it would be difficult to find a way to fetch the water, boil it and prepare the meals for her infant while also working in the garden and cooking for her husband, herself and her other daughter. But when she was asked if she would use formula if it meant giving her child a better start in life, she said yes.

That's because formula holds promise — unfortunately it's a promise that is rarely realized in this part of the world. "Oh sure, it could be great," said Dr. Francis Miro, the chief of obstetrics and gynecology at Makerere University Medical School in Kampala, the Ugandan capital.

Makerere is Africa's oldest university, and it was from here nearly 20 years ago that the first vague reports of "slim disease" — as AIDS was called here before it had a name– started making their way to America. Since then, more than 2 million Ugandans — nearly 15 percent of the nation — have become infected, and of those, 1 million have died in this country where many researchers think the AIDS epidemic may have begun.

"Do you know what I would love to be able to do all day?" Miro asked rhetorically. "I would love to counsel every HIV positive mother about her choices in life. I would love to tell her about breast milk and about formula. Then I would love to have a conversation with her about what would happen to her in her village if she stopped breastfeeding. What would her mother in law say? What would her husband do? And of course I would love to make sure she understood the rules for keeping formula sterile and that she complied with them.

"I would love to do all that," he concluded wearily. "But then I wouldn't be living in Uganda and I wouldn't be talking to my own people. I would be living in America and I would be talking to your people."

Asked if he thought it was always foolish to recommend formula to women living in villages, he closed his eyes and reeled off the numbers: "Twenty seven percent of babies born to infected mothers become infected from breastfeeding," he said. "In rural areas 85 percent of babies will die from dirty water used in formula. I know what they are trying to do, and I applaud the effort. But you don't need a medical degree to figure out which of those odds to take."

All you really have to do is take a walk down the red dust roads near Kakulu. There are no toilets and few outhouses. People live literally from day to day. Water from still pools, the birthplace of malarial mosquitoes, is often used to drink because its so far to walk to the well."The temptation is great sometimes," Mrs. Nannyongoi acknowledged. "We try to boil the water, but sometimes we don't."

Outside, a man is raking about 50 pounds of coffee for bad beans. Nearly a dozen children, mostly naked, play in the yard. In a shack across the way, Halimah Namtovu, a 30-year-old woman wrapped in black scarves, sits beneath a picture of Mohammed. Two months ago she gave birth to the ninth of her children, all of whom are still alive. She said she thought formula would be a good idea, but she has trouble affording soy milk to give her older children. A kilogram costs about a dollar and lasts less than week. "We all do what our mothers did," she said without any rancor. "If there is a better way, I have never seen one."

Despite the habits of millennia, Miro and countless colleagues agree that something fairly drastic must be done to help protect children from HIV. If mothers who are infected with the virus do not breastfeed, their children will have a far better chance of survival.

What is more, AIDS experts now know that if a pregnant woman is treated with a very inexpensive course of AZT during the final stages of her pregnancy, during birth and for a few days after her child is born, the chance of transmission of the virus to the child is reduced by half. The cost of such a course of treatment was until recently $200 per person, but with the help of the UN AIDS program and the World Health Organization, the price is now $50.

"This is the best life-saving program we have in the developing world," said Dr. Joseph Saba, a clinical research specialist with UNAIDS, who has coordinated the attempt to make drugs more accessible to people in Africa.

"You cannot just say to these people you are too poor to live. You have to say we are trying everything on earth to stop this plague. They have to know that we are not condemning them to death."

Saba comes often to Uganda to mediate between drug companies, health officials and aid agencies in an effort to bring drug prices down so that local governments and at least some people can afford them. He knows as well as anyone that, as is the case with formula, making AZT available to pregnant mothers raises almost as many terrible new questions as it answers.

And the biggest one is obvious: will AZT encourage women to have children who will all either die or become orphans? As soon as the mother delivers, she will stop taking AZT; almost no African women can afford to stay on it for long. That means she will die, probably within two or three years, sometimes much sooner. Her child will then almost certainly join the almost unimaginably vast army — in Africa alone the number is now past 8 million — of orphans that the AIDS epidemic has unleashed upon the world.

"What is worse?" asks Dr. Edward Mbidde, the chief of Uganda's Cancer Institute, and one of the countries medical leaders, "to let a baby die of AIDS when we can save it, or to let the baby into the world just to become an orphan in a society that has been overwhelmed with death? I have not yet run into anyone who is qualified to answer that question."

Nobody has. But like everywhere else, people in African villages don't normally choose death when life is even remotely possible. Many rural families are large — the birth rate here is still higher than in most other places in the world — and the concept of family is defined very broadly.

"Children is what villages in Africa are for," said Eelin Berdall, the mother superior of the St. James School, a rural private school deep in the bush of western Zimbabwe. "When people start asking questions about whether it's right to have children under certain circumstances, they are just thinking Western. Nobody here would ever think that way. Here, if somebody is going to die, then their mother, father sister or brother will want children to remember them."

Mrs. Berdall, an Anglican, has been a leader in trying to help get AIDS drugs to pregnant mothers and in trying to help people think of families in unconventional ways.

"Here the child belongs to the family, it is the vehicle of the tribe" she said. "If we can save a child, we have to save a child. And with some very strong effort, we can save millions."

Dozens of youngsters are playing behind her in the baking midday sun. Some of them walk barefoot distances up to 10 miles a day just to attend the school. Their brown cotton uniforms are donated by a variety of groups. The vaccines they receive are donated by the government and by the World Health Organization. Their food is brought by concerned friends and neighbors. Mrs. Berdall summons a teacher to join her.

"This woman's sister just died of AIDS," the mother superior said matter of factly. "She left five children."

Sulfina Dube, 39, nods slowly. Her sister was one of the few women in this part of the world who could afford formula, and who lived in circumstances where it could be prepared properly and regularly. "My sister understood that it was her only chance to save her baby," said Miss Dube, who now looks after Celie, the youngest of the five children orphaned when her sister died of AIDS this year.

"There was never a minute when any of us wondered whether it was right for Celie to be born, or to survive. How could you even ask something like that?" Others wonder how you cannot.

"What we are really asking many women is do you want your baby to die of a horrible disease or do you want him to starve to death?" said Sophia Mukasa Monico, the head of TAOS, Uganda's unique AIDS support organization.

TAOS has 27,000 clients and not one of them receives drugs that are considered routine in the West.

"Is it ethical to bring a baby into this world in that way? Nobody will ever answer that question. We certainly are not going to stop people from having babies. And it's wonderful that there are ways to treat those children and protect them. But let's not look at formula or a few AZT pills as an answer.

It's really just a question: Do women who don't breastfeeed want to bring orphans into this world? Or do they want to risk killing their children by caring for them? We're used to death around here. But this is a choice only Idi Amin could have made."