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S. Africans with AIDS see ray of hope

Over a year after the South African government decided to offer low-cost antiretroviral treatment to everyone with AIDS, only about one out of every 50 receives them from the public health system, said researchers who track the disease.
Suffering from full-blown AIDS, Sithombe Malembe is one of the first AIDS sufferers to be included in an antiretroviral drug program.
Suffering from full-blown AIDS, Sithombe Malembe is one of the first AIDS sufferers to be included in an antiretroviral drug program.Greg Marinovich / for The Washington Post
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Every evening, by candlelight, Sithombi Malembe swallows two pills and one capsule with a gulp of water hauled by hand from the Tugela River. Under conditions once feared too primitive for such treatment, she is journeying back from the brink of death.

Three years ago, Malembe, 42, was a lost soul, far from her home here in KwaZulu-Natal province and wasting away from a disease she did not understand. Today she is one of Africa's rare success stories in the battle against AIDS.

Malembe is still thinner than she would like, but seven months after starting treatment with antiretroviral drugs, she no longer has the emaciated frame or mottled skin common to AIDS patients in final decline, and she is recovering with her three children in a new mud-brick home she did not expect to live long enough to occupy.

"I knew I was going to die," she said. "I wanted to leave something for my family."

One of 280 patients receiving medicines from a hospital in this busy river town, Malembe is proof that antiretrovirals, which have largely tamed AIDS in wealthy nations, can offer similar hope in Africa. The disease has already killed more than 15 million people across sub-Saharan Africa, and an estimated 5.3 million South Africans are currently infected with the HIV virus that causes AIDS.

Yet more than a year after the South African government decided to offer low-cost antiretroviral treatment to everyone with AIDS, only about one out of every 50 AIDS patients who are medically ready for antiretrovirals receives them from the public health system, said researchers who track the disease.

At least 500,000 people with HIV need antiretrovirals immediately, experts said. The public health system is delivering them to about 11,000, while private insurers and employers are reaching tens of thousands of others. But by any measure, the vast majority of those who need the medicine are not yet getting it.

The expanding availability of antiretrovirals, moreover, has not slowed the death rate from AIDS, which continues to kill more South Africans with each passing year, researchers and activists said.

Stymied by shortages of clinics, doctors and nurses, the government program will take years to reach every South African sick enough to need it, officials said. Moreover, the medicine is effective only if patients have the support and knowledge required to take the regimen of various pills correctly and on schedule.

"If you're dying of AIDS in South Africa at this point, you'll be lucky to be getting medicine," said Nathan Geffen, spokesman for the Treatment Action Campaign, an activist group based near Cape Town. But he added that the new government program had brought progress against the disease. "It's better than it was last year."

The Church of Scotland Hospital, where Malembe receives her medicine, operates one of the country's most ambitious rural AIDS clinics. The conditions are far from ideal, with sagging roofs and patients waiting for hours under nearby trees. One doctor and three nurses tend 700 patients.

Since antiretrovirals became available in March, however, dozens of patients such as Malembe have begun to recover, many from near-death. One man, a convicted criminal so sick he was released from jail to die, has returned to health. People who had checked into a nearby hospice, expecting to die, have checked out.

Yet even here, medicines are reaching only a small fraction of those who need them, according to Tony Moll, the tall, soft-spoken doctor who directs the AIDS clinic.

"We're just treating a drop in the ocean," he said.

'Dying like flies'
A few yards from the counter where Malembe collects her medicines is a dreary ward where dozens of thin men and women lie motionless in bed. Some already look dead, and an average of three a day will die of complications from AIDS.

These patients are doomed not by lack of medicine, but by lack of time. Antiretrovirals take two or three months to break the reproductive cycle of HIV and allow the immune system to rebuild itself. Even after starting the medicine, 12 patients here died because their immune systems were too damaged to revive.

But because of stigma, denial and lack of knowledge, most AIDS patients do not even approach the hospital until they have a week or less to live, staff members said. Most of those who die here could have been saved had they arrived just a few months earlier.

"It is very frustrating," said Phikhona Mbongwa, 57, a nurse who has treated AIDS patients at the hospital since 1987. "Our children, they are dying like flies."

The pace of death has so overwhelmed the hospital that doctors sometimes stack two bodies in each refrigerated steel drawer. Of 24 bodies in the morgue one day, Moll estimated that 75 percent had died of AIDS. Glancing at the green cards attached to each drawer, he recited the ages of the deceased.

"Twenty-one," he read, frustration creeping into his voice. "Twenty-four. I mean, why should somebody die at 24?"

Although thousands of South Africans with AIDS continue to die, the tide has begun to turn. After years of questioning the safety and effectiveness of antiretrovirals and resisting calls to make them widely available, President Thabo Mbeki's government announced last year that it would provide the drugs at low or no cost to all who needed them.

The policy shift was partly driven by the soaring number of AIDS deaths, and partly by the sharp reduction in prices for antiretrovirals, including drugs produced by Western pharmaceutical firms and generics made in India and Brazil.

The price of AIDS medicines in South Africa has dropped tenfold, allowing public hospitals to begin offering them, said Christopher Jack, a doctor who oversees the antiretroviral program for KwaZulu-Natal. The biggest obstacles to treating AIDS patients now, he said, is the lack of facilities and trained staff.

"There was no way we could do this [before]. It wasn't affordable, at least not in any sustainable way," said Jack. Now, he added, "We're walking in the right direction."

Narrow escape
Malembe has beaten particularly long odds. In 1996, she left her home in a hamlet near Tugela Ferry to search for work in Johannesburg, a five-hour drive north. She found boyfriends but no job, and she believes she contracted the disease while living in run-down urban townships, she said. Her family lost track of her almost completely.

"I thought that maybe she had died," said her mother, Esther Malembe, 64.

Also left behind were Malembe's three children and a large extended family centered on her father's eight wives. Such marital arrangements, common in Zulu culture, are among the factors blamed for the rapid spread of HIV in KwaZulu-Natal, where experts estimate that more than one-third of people between the ages of 15 and 45 are infected.

Rumors began reaching Malembe's village that she was sick and thin. Finally, in 2001, her mother decided it was time to bring her home. Her half-sister, Ntombifuthi Doris Mbatha, dispatched a son to Johannesburg. He found Malembe, but she had already lost 30 pounds.

"The way she looked," said Mbatha, "we were all waiting for her to die."

Across South Africa, AIDS had already taken a toll. That year, according to United Nations calculations, 270,000 people died from AIDS in the country of 46 million.

Malembe nearly became one of them. But her mother immediately began taking her to doctors, and she soon reached the Church of Scotland Hospital. At that point antiretrovirals, which cost thousands of dollars a year, were unavailable to all but the wealthiest patients. But under Moll's guidance, the hospital grew adept at prolonging the lives of AIDS patients.

Malembe was given antibiotics to ward off infections that were exploiting her depleted immune system. She improved enough to begin working in Tugela Ferry, selling secondhand clothing on the sidewalk outside some shops.

Over the next two years, she continued struggling with AIDS. She suffered from diarrhea, cold sweats, thrush and persistent coughs. By early this year, she could barely walk, was unable to bathe and could not tolerate solid food. She had sores all over her body and slept constantly. Her viral load -- the most accurate measure of the disease's progress -- reached levels that signaled imminent death.

Then in March, the antiretroviral program began at a handful of clinics, including the Church of Scotland Hospital. Malembe was among its first group of nine patients.

"She really just got her foot through the door at the right time," Moll said.

The government was able to purchase antiretrovirals for $65 per patient per month, and it offered them in a simplified regime that consisted of taking one capsule and one pill each morning and then, 12 hours later, one capsule and two pills.

In wealthier nations, AIDS patients had been taking a complicated cocktail of pills. Researchers feared such a schedule would be difficult to manage in regions with poor electricity, water supplies and transportation. Strict compliance is crucial because a missed dose can allow the development of resistant strains of HIV.

In the first days of taking antiretrovirals, the body's immune system begins to revive and battle infections, often causing various side effects. For Malembe, the first two days brought on diarrhea and bad dreams. One night, she imagined she heard crying outside. She awoke terrified and confused.

But within a few weeks, Malembe was strong enough to return to work, and after four months, she had enough strength to carry a heavy bag of clothes again. Her own weight also began to bounce back.

The change was so astonishing that acquaintances approached her to ask about her recovery, she said. Some also shared a secret: They, too, were sick and wanted to know how to get better.

In the end, she told them, she prayed to God, accepted her diagnosis and put her trust in the doctors. The medicine did the rest.