An epidemic of denial: South Africans fail to even acknowledge the disease

JOHANNESBURG – Two years ago the South African government honored Mpho Bab usi as an AIDS “Educator of the Year” for courageously going public about having HIV, and consenting to radio and newspaper interviews highlighting the AIDS epidemic.

But her bravery proved costly. Her mother didn’t approve, especially when Babusi got fired from her hairstyling job after two customers complained about the chance of being infected. The disagreement forced Mpho and her 3-year-old son to move out of her mother’s home.

By the end of last year, a desperate Babusi found her way to the doorstep of former President Nelson Mandela, who had presented Babusi with her award.

She told the guards at the gate that she wouldn’t budge until she talked to Mandela. After she refused 200 rand (about $33) to just go away, an aide eventually called around and arranged for her to stay at Nkosi’s Haven, a financially struggling private shelter for HIV-positive women and their children. She now feels wanted and cared for, but hasn’t heard a word from anyone in Mandela’s office since arriving in January.

In some ways, Babusi’s situation is a microcosm for AIDS in South Africa. As the first international AIDS conference to be held in a developing country begins in Durban on Sunday, it seems the most important work against the epidemic here has come from committed individuals and non-governmental organizations.

The government, meanwhile, has been giving out awards, issuing reports and developing strategic plans. And the general population has been largely in denial about the disease. Even with alarming statistics showing 20 percent of the young adult population infected with HIV, most choose not to be tested. People almost invariably say their loved ones have “the flu” or tuberculosis, instead of admitting they died or are suffering from AIDS.

No drugs

President Thabo Mbeki has resisted relatively inexpensive measures, such as giving anti-retroviral drugs to pregnant women to cut down on transmission to their babies. And a few months ago, he stunned AIDS activists and scientists by consulting with AIDS “dissidents” – people who don’t believe HIV causes the disease.

“We get chastised everywhere we go,” acknowledged Health Minister Manto Tshabalala-Msimang last week. “Even some of our friends say they don’t understand what South Africa is doing.”

But Tshabalala-Msimang said the country’s struggle to overcome the legacy of apartheid, culminating in the election of a black majority government in 1994, had hurt efforts to pay more attention to HIV

“We concentrated on the struggle,” she said. “Maybe we did not do as much as we should have done because there were other competing issues on the table.”

Tshabalala-Msimang said that was all changing, and their new five-year strategic plan shows that they are serious about fighting the epidemic on all levels. Even government critics, accustomed to government silence, recognize that things are at least somewhat better.

“For a long time the government wasn’t doing anything at all. As NGOs (non-governmental organizations), we have been fighting the disease alone,” said Sister Theresa, who runs a Salvation Army orphanage in the black township of Soweto for abandoned, HIV-infected children. “At least the government is now talking to the people.”

Babusi said she knew the government couldn’t afford to give everyone the expensive anti-retroviral drugs or to end the poverty underlying so much of the disease.

“I’m not saying they must spoon-feed us,” she said. “But for now we’re being rejected. We don’t know where to go. People don’t want us.”

A lot of denial

Officially, South Africa has laws against discrimination. But that doesn’t stop people from ostracizing friends and family members who become infected, a situation not unlike that of the United States in the early years of the AIDS epidemic.

And there is plenty of denial. Caroline Mdakane of Soweto said three of her grandchildren had died of AIDS, but it was not discussed in the family.

“They don’t talk,” she said. “It was only the doctor that told us.”

Last week, Mdakane came to pick up formula for her adult daughter’s two children at the clinic at Chris Harni Baragwanath Hospital, which serves HIV-positive women and their children. Although she volunteered to be interviewed, she told a reporter that she didn’t know whether her daughter had HIV, and that she was there because her daughter was too busy to come and get the formula herself.

But the other women in the waiting room that day said Mdakane’s daughter was home sick with AIDS and that her two children also had the virus.

“Some people think if you ignore it long enough, it will go away,” said Lucky Mazibuko, an openly HIV-positive columnist at the country’s largest newspaper, the Sowetan. When his brother died a few weeks ago of AIDS, the minister did not utter a single word about the disease during the funeral service.

Government stalls

When a member of Parliament

from the opposition party called on her fellow legislators to take an HIV test and disclose the results, she was met with deafening silence. Some say privately they think there are personal reasons behind Mbeki’s startling decision to consult with AIDS dissidents. Various government officials have been rumored to have AIDS, but the only one to go public with his status has been a gay white male judge.

Last month, it was revealed that a former leader in the Inkatha Freedom Party had died from AIDS – and so had five girlfriends, all of whom were infected after he learned he had HIV.

Mazibuko said if government leaders disclosed their HIV status, it could have a tremendous impact on people’s willingness to get tested. Estimates are that only about 5 percent of 4.2 million South Africans with HIV know they are infected. But Mazibuko also said such disclosures could hurt the country’s chances to attract foreign investors.

“Unfortunately, it’s not something we can force on anyone,” he said.

Health Minister Tshabalala-Msimang said it was unfair to ask South African government officials to take an HIV test when leaders of other countries had not.

With the death toll rising sharply, even businesses are feeling the impact – and starting to respond.

“When it starts to affect 35 percent of your payroll, you’ve got to pay attention,” said Sharon White, formerly employed in personnel for a trucking company, who recently opened AIDS Education and Training, a consulting firm for businesses. They’ve been overwhelmed with work in the past eight months.

The children

Unlike most infectious disease epidemics, AIDS for the most part bypasses kids, the aged and the infirm, White said. Instead, it targets young adults in their peak years of productivity. Especially alarming to companies, she said, are figures showing that 45 percent of students at some universities are infected.

“That’s your future work force,” she said.

Anonymous surveillance testing among her clients’ employees has found infection rates ranging from 16 to 28 percent. In the mining industry, 40 percent of workers are said to be infected, and a recent survey at a truck stop found 60 percent of truckers had HIV.

Many large companies have AIDS offices or departments. The state-owned utility is spending $600,000 educating its employees about AIDS, and White said other firms were reaching out to schools and the community to try and prevent infections among future workers.

Some industries, such as min AIDS

ing, are automating more to cope with the expected loss of workers. And White said companies were training three people for each skilled opening, after losing so many to AIDS.

One appliance retailer has even said it plans to expand into Poland and Czechoslovakia, citing AIDS and the resulting shrinkage of its customer base as the reason.

Daily deaths

Funerals are a booming business. At Kupane’s Funeral Home in Soweto, Ephraim Kupane said the number of funerals had doubled in the past year, even as the number of funeral homes had also doubled. Between 11 a.m. and 2 p.m. on Saturdays, a popular time for funerals, Kupane’s runs about six funerals per hour. At Soweto’s Avalon Cemetery there are usually about 30 burial services going at once.

“They just come in like this, this, this,” Kupane said, snapping his fingers to indicate a rapid succession of corpses. “We know what it is, but when they write the death certificate, they write ‘natural causes.’ They very rarely say it. In fact, never.”

His brother David, who runs the funeral home, said the government had failed to take the kind of measures needed to stop the epidemic.

“They talk to each other, and then they go to their beautiful houses in Sandton,” a ritzy Johannesburg neighborhood. “They don’t talk to the people here. I haven’t seen anybody here dropping off free condoms.”

Last week’s meeting of Mbeki’s hand-picked panel of experts – including dissident scientists who believe AIDS is caused by poor nutrition and other lifestyle factors – was held at an upscale Sandton hotel.

“It’s a waste of time, a waste of money,” David Kupane said of the panel and hullabaloo surrounding it. “We all know the truth – everybody knows that the cause is sexual transmission.”

Last week, 5,000 scientists worldwide signed a statement reaffirming there was overwhelming evidence that HIV caused AIDS. Mbeki’s spokesman said the statement belongs in the dustbin.

At Soweto’s Baragwanath Hospital, where half of the patients are HIV-positive, Dr. James McIntyre was among those who signed onto the statement. While he believes the government has improved its response to AIDS in recent months, he is disturbed that it still hasn’t agreed to give anti-retroviral drugs to pregnant women to stop transmission of the virus. McIntyre and his colleagues are also looking at giving anti-retrovirals to children and adults. He said arguments against providing such treatments more widely are overblown now that pharmaceutical companies have cut prices.

“We think it’s feasible and that AIDS

it can be done within an urban African setting,” McIntyre said. “We know what to do, now it’s time to do it.”

More help needed

But his view is not universally shared. Kelvin Billinghurst is the chief medical officer for the HIV-AIDS and sexually transmitted diseases branch of the health department in the largely rural province of Mpumalanga. He also heads a non-governmental organization in the area training local people to care for people with AIDS.

He cited the case of a woman and her five children, ages 5 to 18. She is very weak and has lost 10 percent of her body weight to HIV. When he visited recently, all she had was two cabbages.

“The reality is that when that women dies, she’s going to leave five abandoned children, and the smallest girl will become sex fodder for any man with a loaf of bread or a tin of fish,” Billinghurst said. “If we can’t even provide food for a family that’s dying of AIDS, we should think carefully about providing anti-retrovirals to pregnant women.”

Gail Johnson, the founder of Nkosi’s Haven, supports giving the drugs to pregnant women, but also agrees that basic necessities like food and hygiene products are needed.

“It’s just not happening,” she said. “To me, the movement is coming from the NGOs, from people who are becoming more and more aware.”

Johnson falls into that category. A white woman trained in the hospitality and public relations business, she started a care center for HIV-positive gay men after a friend’s brother died of AIDS. Before the center closed for lack of funds, they took in Nkosi, a 2-year-old HIV-positive boy whose mother was too sick to care for him. But she visited him as often as she could.

Johnson ended up taking Nkosi home with her and eventually adopted him. Her experience with his mother led her to open Nkosi’s Haven, a place where HIV-positive mothers and their children could stay together.

There was a neighborhood dust-up when Nkosi enrolled in the local public school, which generated national publicity. It soon blew over, but it led to an invitation for Nkosi to address the AIDS conference during the opening ceremonies Sunday.

Now 11 but less than 4 feet tall, Nkosi speaks softly and walks gingerly, worn down by AIDS. But he also has a preternatural quality often seen in children with terminal disease.

He said he was just like any other kid, but he just can’t play as hard or run around as much. Sometimes he stays at the shelter, where the healthier women take of AIDS

care of the sicker ones, and children look after one another.

“I love the babies there. They are so beautiful,” Nkosi said. “I just like looking after them. I know how they feel in their heart.”