A Muted Response to AIDS

TEMBISA, South Africa -- Flora Mogano has given up waiting for someone to come and help treat the people with AIDS in her township. When the government is slow, she makes do with miracles.

But judging by her patient records -- laboriously handwritten in exercise books -- the record on miracles here is patchy. On every page, many of the names are skewered with a fluorescent green line: the ones who have died. Of 377 people in her latest book, for last year and this, 100 are dead.

Free antiretroviral medicines, released in five hospitals two weeks before South Africa’s recent elections, have not yet reached this township north of Johannesburg. But Mogano, 60, swears by a different medicine, an “immune booster” with plant-based vitamins and minerals, along with plenty of humble prayer.

“The majority of people spend their money looking for a better witch doctor,” said Mogano, a traditional healer. “After they’ve tried their best and failed, they come to me.”

Just after it took power a decade ago, the African National Congress government promised a comprehensive AIDS treatment policy. It has taken 10 years to arrive.

In the meantime, AIDS has become the country’s No. 1 killer, and South Africa has more HIV-positive citizens than any other country. By some estimates, more than half a million South Africans have died of AIDS-related illnesses. The disease claims some 600 lives daily, a figure that is likely to skyrocket, AIDS experts say.

A survey released this month said nearly 7% of South African children between the ages of 2 and 9 are infected with HIV.

Former President Nelson Mandela has acknowledged that he did not do enough to combat the epidemic, and his successor, Thabo Mbeki, has questioned whether the human immunodeficiency virus causes AIDS and whether the antiretroviral drugs widely used in the developed world help or hurt.

That has left many of the 5.3 million HIV-positive South Africans dependent on volunteers such as Mogano and other traditional healers, many pushing questionable remedies.

Asked whether she believed that antiretroviral drugs, rather than her “immune booster” capsules, could be a solution, Mogano pursed her lips and replied primly, “The solution is prayer.”

Mogano claims to have cured many patients with prayer and sees the disease as a punishment for sin.

“Some say: ‘Do you really think God is there? How can we suffer like this if God is there?’ If you read the Bible, you read that when the Israelites were sinning, God punished them with different things,” she said. “God said, ‘If they are ashamed of their sins and come back to me and bow to the Lord, I’ll hear their prayers in heaven and I’ll relieve them.’ That’s why you’ll find people who go to church and confess their sins and they’re cured.”

A thin, seriously ill patient, listening to her words, looked sadly into the distance.

Mogano’s Good Hope agency bathes and cares for dying AIDS patients and provides a home for 12 AIDS orphans, relying on private and church sponsors.

Although Mogano’s sponsors pay for the pills, the immune booster capsules cost other AIDS victims about $37 a month -- highly expensive in a country with 40% unemployment.

Her reliance on prayer and an untested medicine highlight the desperate remedies many seek out if they can’t get free antiretroviral drugs, which otherwise cost about $100 a month.

Dr. Ashraf Coovadia, an HIV specialist pediatrician at Coronation Hospital in Johannesburg, said a rash of the so-called immune boosters had appeared on the market.

“Unfortunately, there are a lot of claims around that people should take this, that and the other. Many go under the term ‘immune booster,’ and patients buy them out of desperation,” she said. “People will fall for these things, unfortunately. But if you are going to spend so much, you might as well spend the money on ARVs, which at least are known to help.”

Despite Mogano’s belief in faith healing and vitamin pills, she is critical of the government’s muted response to the AIDS crisis.

“The more you talk facts, the more you’re an enemy,” she said, referring to the government’s sensitivity to criticism on AIDS, “because you are putting the dirty linen in the streets.”

The Treatment Action Campaign, an HIV-AIDS lobbying group, took legal action in 2001 to force the government to make the drug nevirapine, used to prevent AIDS transmission from pregnant women to their babies, more widely available. The group succeeded despite a government appeal.

Under severe pressure, the government last year agreed to distribute free antiretroviral drugs nationally. After repeated delays, the program was launched April 1 in five hospitals in central Gauteng province.

AIDS carries such a stigma in South Africa that families often reject patients, children taunt their sick parents and spouses conceal their HIV status from each other, according to health workers in the townships of Soweto, Vosloorus and Tembisa. Many activists believe that without strong government leadership and politicians who are willing to discuss the problem openly, it will be difficult to change the mentality.

A cockroach crawled lazily up the spattered, mustard-colored wall next to the bed where Letta Coaloa, 37, spends her days dying under a shabby pink quilt full of holes.

She’s not afraid. She has no hopes.

“Ach, come whatever might come,” she said tiredly.

Coaloa thinks she contracted HIV while attending a funeral.

Last year, Coaloa’s 9-month-old son, who was HIV-positive, died. She worries about her three surviving children, two of whom seem very stubborn and rude these days -- especially Charles, 18, who taunts her that she’ll die of AIDS.

Coaloa cannot walk or stand without help. Every day, Good Hope volunteers bathe her in a tin tub holding a few inches of warm water. Her body is thin, her skin shriveled and loose.

With a kind of resignation, she leaned over the tub while Joyce Maake, 34, washed her hair and back. Rubber gloves squelched as a sponge moved across her cheeks.

In key speeches, such as his state of the nation address or his recent victory speech after being reelected, President Mbeki refers to HIV and AIDS only in passing. He lumps AIDS in with other illnesses, such as tuberculosis and cholera, questioning why people don’t make as much of a fuss about them.

In South Africa, death certificates usually record that an AIDS patient died of tuberculosis or pneumonia -- the illnesses they caught because of their immune deficiency.

“We have had TB for decades. We have had malaria for decades,” Dr. Coovadia said. “But the rate at which HIV has become the No. 1 killer in this country is alarming.”

The funeral business is one of the fastest-growing industries in South Africa, and going to funerals is a common weekend activity in black townships, more frequent for South Africans than having a barbecue or going to a soccer match or to the hairdresser, according to a reputable market research poll, the All Media and Products Survey. Thirty percent had attended a funeral in the previous month, it found, and 26% had been to a doctor.

AIDS has taken five of her cousins in the last few years, yet Shirley Mofokeng, an African National Congress councilor for the city of Johannesburg, talks in the ambivalent terms that seem to reflect the party’s hesitancy about confronting the disease.

“I don’t know what is going on in people’s minds for not wanting to accept these preventative things that the government is making available. They actually reject these condoms,” she said, advocating celibacy as an answer. “People are screaming at the government. People are saying that we must make available these antiretrovirals.

“Those ARVs are not a cure -- there are implications of side effects and so on,” she said in an interview a week after the rollout of the free drugs in Gauteng.

On the table next to Pumphile Ngcobo’s bed is a forest of medicine bottles, their incomprehensible labels full of mysterious hope. But not one is the medicine she really needs. She does not even know where to go to get the free antiretrovirals that could keep her alive.

Ngcobo, 39, her three children and one grandchild live in a spartan two-room shack with no water or power. She came to Vosloorus, south of Johannesburg, three years ago to nurse an ill sister, who soon died of AIDS. Another sister died of the disease not long after.

A year ago, when pregnant, Ngcobo found out she was also HIV-positive. So is her 2-year-old boy, Kheta. Another sister is so weak and thin that Ngcobo is sure she has the virus as well. Her sister denies it but is afraid to be tested.

Ngcobo thinks she caught the virus caring for her sisters, not thinking that her husband, who died in a car accident, might have been HIV-positive.

She says that for many people, the free medicine has come too late.

“The government delayed it. They made excuses that they could not afford to treat the people,” she said. “They weren’t concentrating on saving lives. They took their own time and it took too long.”

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AIDS in S. Africa

Among the estimated 40 million people living with HIV/ AIDS around the world at the end of 2001, the vast majority, 28 million, live in sub-Saharan Africa. The virus has spread at such a rapid rate in South Africa that the country is home to more HIV-positive people than any other nation.

People living with HIV/AIDS, in millions:

South Africa 5.0 India 4.0 Nigeria 3.5 Kenya 2.5 Zimbabwe 2.3 Ethiopia 2.1

Deaths from AIDS AIDS killed more people in South Africa during 2001 than in any other country. Deaths from AIDS, in thousands:

South Africa 360 Zimbabwe 200 Kenya 190 Nigeria 170 Ethiopia 160 Tanzania 140

Rate of incidence Despite an already high rate of infection throughout the country in the late ‘90s, the incidence rate of AIDS in South Africa has increased aggressively since 1997.

Adult rate of AIDS, in percent:

1997 12.9% 1999 19.9% 2001 20.1%

Child mortality Child mortality in South Africa as a result of AIDS is likely to grow even worse this decade. Deaths per 1,000 births by age 5:

With AIDS Without AIDS TOTAL

2000 120 66 186 2010 147 48 195

Sources: UNAIDS, Institute for Security Studies