OrlandoSentinel.com, 1 December 2002, AIDS ravages South

By Ann Hellmuth, Sentinel Staff Writer

SOWETO, South Africa -- A tiny tornado named Vuyiswa barrels through the orphanage door, squealing with delight as she launches herself into the lap of a young woman chatting to a group of children.

"How is my angel?" pediatrician Carolyn Bolton asks as the 8-year-old, almost submerged by a purple-and-white backpack, snuggles blissfully into her arms.

Then the 30-year-old doctor listens carefully as Vuyiswa excitedly describes her day at school. Only weeks earlier, complications from the AIDS virus had nearly killed the child, whose list of illnesses includes chronic lung problems, meningitis and bronchial pneumonia.

Vuyiswa is one of 30 residents of Bethesda House, a Salvation Army shelter for HIV/AIDS children in this vast black township of 1.5 million people on the outskirts of Johannesburg.

Voluminous medical files have become the scrapbooks of their lives, chronicling not first words or faltering steps, but the constant chest infections, fevers, meningitis, brushes with death and the fierce will to live.

More than 83,500 children in South Africa have inherited the AIDS virus from their mothers. Two million are predicted to be orphans by 2015. Already, children as young as 12 are heads of households, struggling to care for siblings who in all likelihood are HIV-positive.

Out of a population of almost 40 million, 4.74 million South Africans are living with the virus. The epidemic threatens to wipe out a generation, deplete the labor force and shatter the economy of Africa's most prosperous and stable nation.

In preparation for World AIDS Day today, the United Nations reported last week that nearly one in 11 adults in sub-Saharan Africa is infected with the virus -- 58 percent of them women.

Protector of the innocent

Twenty-four children have died since Salvation Army Maj. Lenah Jwili opened Bethesda House in 1993. The aim was not only to nurture the infected babies but also to teach families how to care for the children and eventually accept them back into their homes.

"Even a squatters camp with a mother and father is better for a child," said Sister Theresa Mokhesi, 63, who runs the shelter. But she concedes that few of the children go home again.

Sister Theresa has been there since the beginning. To her the names of the children on a memorial outside the orphanage's main building are more than grim statistics.

The first to die was Khotso Nohiki Puseletso -- born Feb. 2, 1992, died July 27, 1996. The most recent death listed was that of Lerato Coitse Modim -- born Aug. 18, 2001, died Jan. 26, 2002.

"Our children come very young," Sister Theresa said. "I'm like a mother with lots of children."

Vuyiswa is one of many children, abandoned by a dying mother not from neglect, Sister Theresa insists, but out of love.

"The mothers often abandon the children," she said. "It is a way to get them help. They leave them at a hospital."

As she talks, Sister Theresa checks on 5-year-old Ayanda, who is struggling to stand by clutching the leg of a small table in one of the sun-filled rooms at Zodwa House, which is part of the Bethesda complex. Money for the red-brick building was donated by an Englishman in memory of Zodwa, "a little girl who changed our lives."

Ayanda looks up with huge, soulful brown eyes, then tentatively stretches out her arms. Her soft, warm hand feels as frail as a bird. The child is barely the size of a toddler.

Little is known about Ayanda. She arrived at Bethesda House two years ago after AIDS killed her mother. Too sick to qualify for treatment with drugs that could have blocked development of the virus, Ayanda now has full-blown AIDS. She has been near death many times.

Sister Theresa laments the lack of money to provide drugs to all the children but exults in the rare success story: an 11-year-old boy, Lisigo, who was one of the first babies brought to Bethesda and is now top of his class at school.

For many of the children, however, there is little hope. They will stay at the shelter "until the end," Sister Theresa said.

Then they will be buried at Soweto's Avalon cemetery -- scene of violent antigovernment demonstrations during the apartheid era, which ended in 1994 with the nation's first democratic elections. A funeral home provides the coffins and burial services for free.

Playing God

Bolton found the daily emotional pain of treating children with HIV or AIDS almost too much to bear.

"When I got home, I would spend more time crying than anything else," the pediatrician said, explaining why she decided to become a clinical researcher.

Bolton said the worst part is "playing God" and having to decide which children should be given the limited supply of antiretroviral drugs. "For every patient I can successfully treat, there are 12 I can't treat and who will die from AIDS."

Now Bolton is a clinical researcher with the University of Witwatersrand, Perinatal HIV Research Unit, helping conduct trials on ways to prevent mother-child transmission of the virus.

She still stays in touch with her patients, giving them a private cell-phone number so they can call and tell her what they did at school, or talk about how sick they feel.

Bolton, the daughter of a physician and product of a privileged childhood in Johannesburg's exclusive Northern suburbs, chose to stay in South Africa after completing her medical studies. Fifty percent of her classmates emigrated.

It is a medical brain drain that is further hindering the fight to control the spread of the virus. Nurses also are being lured away by hospitals in the United States, Saudi Arabia and the United Kingdom.

Like Bolton, many of the doctors and medical experts who have remained in South Africa are dedicated to finding ways to control the virus that threatens their country.

The research unit recently received $21.3 million from the U.S. government to help the search for affordable HIV/AIDS treatment by financing trials involving 100 people infected with the virus. The money helps, but billions of dollars are needed if cheaper and more effective ways of stemming the virus are to be found.

"Operational research is running out of money," Bolton said. "There are 100 on the program, but if the money runs out, I can't think what will happen. We will have given hope but may have to pull the carpet out from under their feet."

Save the children

The Perinatal HIV Research Unit is based at Chris Hani Baragwanath Hospital in Soweto -- the largest hospital in the Southern Hemisphere, with about 3,300 beds. Nearly 200 patients are admitted daily.

Research includes prevention of mother-to-child transmission through the use of the drug nevirapine. The drug has proved successful in reducing the number of HIV-positive infants in South Africa, but early government opposition slowed aggressive distribution.

One dose of nevirapine is given to pregnant women during labor and another dose to the newborn. The treatment can reduce transmission by about 50 percent. Boehringer Ingelheim, the drug's manufacturer, has offered to provide it free to South Africa for five years, but the government has yet to implement a mechanism for distributing it nationwide.

Dr. Neil Martinson, director of the research unit, said the anti-AIDS drugs work but questions whether "they can be provided to thousands of people in time."

Martinson said infection takes place mostly during delivery and that, while transmission from mother to child is less than 1 percent in the United States, it is 15 percent in South Africa.

Susan is typical of the women in the research program. She received nevirapine during labor and is banking on the treatment to save her baby. So far, 3-month-old Lunga -- which means "good boy" in Zulu -- has tested negative for the virus.

The 32-year-old woman, who would not give her last name, said she was afraid of what would happen if her boyfriend found out she had been to the clinic. She is secretly bottle-feeding Lunga rather than risk infecting him with breast milk.

"When I was pregnant, it was hard," said Susan, who has three other children. "I was too scared to tell my boyfriend I had AIDS. My mother helps me with the bottle feeding so we can keep it a secret."

Many women in South Africa have little control over their sexual lives, and Bolton said they "are often not in a position to negotiate sexual behavior and things like the use of condoms."

The research unit gives out more than 3,000 condoms a month as it seeks to empower and educate South African women in ways to prevent the spread of HIV. The government, as part of an intensive awareness and education program, buys nearly 400 million condoms a year and distributes them throughout the country.

The message appears to be getting across. A recent study by the Centre for AIDS Development, Research and Evaluation, known as CADRE, sounded a rare optimistic note, concluding that condom use is widespread and endorsed by all age groups, with "impressive levels" being reached by those younger than 25.

Human rights

There is no doubt that the war on AIDS is being hampered by ignorance, superstition, lack of money and the government's initial refusal to order nationwide distribution of antiretroviral drugs.

Last year, AIDS activists, arguing that mothers had a right to protect their children and it was a human-rights violation to deny them the drugs, successfully petitioned South Africa's highest court to force the government to start immediate nationwide distribution of nevirapine.

One of their main opponents was President Thabo Mbeki, who refused to accept that HIV causes AIDS. Mbeki tried to overturn the court's order, but he backed down in April amid a storm of criticism at home and abroad.

A February deadline has been set for rolling out a nationwide treatment plan, and activists have warned they will launch a campaign of nonviolent disobedience if the date is not met. In the meantime, the government has announced that it will provide preventive post-exposure treatment to rape survivors and medical practitioners.

HIV/AIDS spending has since been boosted from $108 million to $323 million. In addition, there has been some easing of tensions between the government and AIDS activists.

Even the release of the nation's annual death statistics has been enmeshed in the politics of AIDS.

The government was embarrassed when the South African Medical Research Council issued a report last year showing that 40 percent of the deaths of South Africans ages 15 to 49 in 2000 were caused by AIDS. The Cabinet immediately commissioned another study, which when it was released last month listed accidents as the No. 1 cause of unnatural deaths and lumped tuberculosis, HIV/AIDS, flu and pneumonia in second place.

Ayanda Ntsaluba, director general of the Ministry of Health, has no illusions about the scale of the government's task in trying to combat the AIDS virus.

"None of us can say with a clear conscience that we have done everything we could or should," Ntsaluba said, stressing the huge cost involved in a country where only 7 million South Africans have health insurance and only 1 million have HIV/AIDS coverage.

Life expectancy drops

The HIV/AIDS numbers are staggering. An estimated 1,650 people contract HIV daily. About 2.65 million women and 2.09 million men ages 15 to 49 are infected. Life expectancy has dropped from 59 years to 49 years. By 2010, the disease will have killed 5 million to 7 million South Africans.

Another chilling trend is the soaring number of rapes, some rumored to be prompted by the myth that sex with a virgin can cure AIDS. One of the latest victims was a 5-month-old girl who later died from extensive wounds.

According to Interpol, there were more than 52,000 rape cases in South Africa in 2000 -- 40 percent involving victims younger than 18. In the first half of 2001, 20 percent of the victims were younger than 11.

At the U.S. Embassy in Pretoria, where free condoms are in all restrooms, the ambassador, Cameron R. Hume, anguishes about whether the HIV/AIDS epidemic will derail South Africa's chances of becoming the continent's most successful democracy.

"South Africa has good financial systems, natural resources, tourism, good macroeconomic policy and a good infrastructure, Hume said before listing problems such as HIV/AIDS, poverty, troubled schools, soaring crime and corruption.

But he predicted very serious consequences if the country does not succeed in its struggle with AIDS.

If South Africa, with its strong connections to the global economy, does not succeed, "the lights will go out all over Africa," Hume said.

Ann Hellmuth can be reached at ahellmuth@orlandosentinel.com or 407-420-5054. She recently spent two weeks in South Africa as part of the Pew International Journalism Program of Johns Hopkins University School of Advanced International Studies.

Copyright (c) 2002, Orlando Sentinel