Spring 2002

Life and Health

Hope Held Captive

Robyn Page

The promise of a vibrant new South Africa is quickly fading in the face of a mounting HIV/AIDS crisis. Vision contributor Robyn Page provides a firsthand report of the unfolding disaster in her native country.

In October 2001, Vision managing editor John Meakin and I spent time in Johannesburg, South Africa, learning about the AIDS crisis that is decimating the country. What we found was one of the worst HIV/AIDS epidemics in the world, dedicated people working against overwhelming odds and, at times, unbearable sadness. “Our continent is dying,” lamented Gail Johnson, foster mother of the late AIDS activist Nkosi Johnson. “People talk about the African Renaissance. Is there going to be anyone left to have a renaissance with?”

Unlike developed nations where infection rates are low and access to antiretroviral drugs has improved AIDS patients’ quality of life, South Africa faces a national calamity. About 4.7 million South Africans—one in nine—are living with HIV/AIDS, more than in any other country. A report released by the South African Medical Research Council (MRC) during our visit stated that AIDS has become that country’s single biggest cause of death, accounting for about one quarter of all deaths in 2000. “AIDS is the biggest catastrophe facing the country,” said David Harrison, a medical doctor and the CEO of loveLife, an HIV prevention organization. “Over the course of the next 10 years, it is going to become more and more visible.”

According to the MRC report, by 2010, without interventions to prevent the spread of HIV, the number of AIDS deaths in South Africa will grow to more than double the number of deaths from other causes, resulting in five to seven million cumulative AIDS deaths. The lower figure is roughly equivalent to the population of metropolitan Johannesburg, South Africa’s largest urban area. The higher one means that the equivalent of the metropolitan areas of both Johannesburg and Durban-Pinetown (in KwaZulu Natal) would be lost.

Public Enemy Number One 

Once a pariah of the world for its apartheid policies, South Africa quieted the naysayers with its peaceful transition to democracy in 1994. In their book AIDS: The Challenge for South Africa (2000), Alan Whiteside and Clem Sunter wrote, “‘Never again’ is not a bad message with which to start building a new nation. Yet fate has dealt South Africa a cruel blow by replacing apartheid with HIV as public enemy number one.”

During our visit, Archbishop Desmond Tutu, a veteran antiracism crusader, appeared on SABC television’s Newsmaker program and encouraged the nation to do something about the crisis. “Let’s stop playing around and roll up our sleeves and invoke the spirit that fought apartheid,” he said. “We did it with apartheid, we can repeat it with AIDS.”

But perhaps it is easier to rally support against visible injustices than against an invisible virus. According to Harrison, the focus on political negotiation and freedom in the early 1990s left little energy to focus on HIV/AIDS. Matters were complicated by the fact that the government was changing hands, leaving the outgoing health department reluctant to embark on new initiatives. “It is terrible to say,” Harrison admitted. “We had this idea that AIDS was going to happen, and even at that stage demographers and epidemiologists were starting to project the trajectory that we in fact have followed.”

Distracted by charges of embezzlement and by a controversy over Virodene, an industrial solvent touted as a cure for AIDS, the new government did little to slow the progress of the epidemic. Further, current South African president Thabo Mbeki has frustrated many by questioning the causal link between HIV and AIDS and refusing to acknowledge the benefits of antiretroviral therapy, especially for pregnant women.

The Fertile Ground of Ignorance 

There can be no doubt that black townships, one of the legacies of apartheid, have become a fertile environment for the spread of HIV/AIDS in South Africa. For example, touring the sprawling township of Soweto, near Johannesburg, we learned of poverty and of the high rates of unemployment and endemic violent crime, including rape and murder. We saw rambling squatter camps and rundown hostels for migrant workers and visited a pub where, ironically, free condoms were available. Large signs posted throughout Soweto proclaimed that 24,000 people had died of AIDS in the township’s Chris Hani Baragwanath Hospital.

Other factors driving the epidemic in South Africa include high levels of sexually transmitted diseases, which increase the risk of HIV infection; societal acceptance and encouragement of multiple sexual partners, especially for men; and concurrent partnerships. Johnson, who runs a residential care center for HIV/AIDS-infected mothers and their children known as Nkosi’s Haven, told us about a man who insisted he had never been unfaithful: “He’d had about twelve partners in six months, but he’d been faithful to each one at the time.”

Women are disproportionately affected by the epidemic. Biologically, women are more vulnerable to HIV infection than men are: the chance of transmission from a man to a woman is about six times higher than the other way around. Additionally, women’s low status in South African society and their economic dependence on men make it very difficult for them to protect themselves from infection. Johnson related a story about two HIV-positive women in her care. One became pregnant with twins after her first sexual encounter; the other lost her baby to AIDS when it was 10 months old. “Both men are now with another woman, and both of those women are pregnant,” she said. “And the father of the twins knows he is infected.”

Myths about HIV/AIDS abound. David Spencer, a physician who treats HIV-infected patients, told us about one superstition that has led to a frightening increase in rape: “Some sangomas [traditional African healers] will say, ‘If you have sex with a virgin, your AIDS will be cured.’” Recent horrific reports tell of girls as young as five months old being raped.

Widespread denial persists. “We are being so ‘ostrich,’ it’s pathetic.”

Still, widespread denial persists. Everyone we spoke to expressed frustration about it. Johnson spoke for many when she said, “We are being so ‘ostrich,’ it’s pathetic.” Yet evidence of the epidemic abounds. For instance, a new cemetery, built to last eight years, has been filled in two and a half years because of AIDS-related deaths. According to Johnson, “You can have three funerals going on at a time. You almost need a choreographer telling one group to keep quiet while this crowd prays and that crowd drops the coffin.”

As in many Western nations, HIV/AIDS in South Africa first appeared among the homosexual community. Since then, it has become primarily a heterosexual disease affecting males and females between the ages of 15 and 45. But as Sunter told us, “You don’t catch AIDS, you acquire it.” (See our interview: The Invisible Enemy.) 

Sending this message to youths is particularly important. “I think it’s a common cause among all AIDS experts in this country,” Sunter commented, “that we must educate kids between 8 and 15 to change their sexual behavior; to minimize if not entirely rule out unsafe sex, either by putting off having sex for as long as possible or by using condoms.”

Changing Their Minds 

One of the most visible programs reaching out to young people is loveLife, started in 2000 and funded primarily by the Henry J. Kaiser Family Foundation and the Bill & Melinda Gates Foundation. Unlike many health awareness campaigns, loveLife has chosen a very bold approach with brightly colored billboards, newspaper advertisements, radio and television dramas, pamphlets, and a toll-free telephone helpline. LoveLife CEO Harrison told us that they have tried to base their organization on as much national and international research as possible.

One of their most important findings is the strong correlation between a sense of the future, a sense of confidence, and one’s sexual behavior. As Harrison explained, “Sexual behavior in most young people is a function of the ‘discount rates’ that they apply to future benefits. Young people who have a sense of the future are those who tend to look after themselves in the present.”

LoveLife’s approach is based on the logic that frank and open discussion of sex, sexuality and relationships is fundamental to changing the course of the epidemic. “We don’t want to convey a message in the first instance. We want to get people to talk about the epidemic,” Harrison remarked. The next step is to motivate young people toward a positive lifestyle based on universally accepted values. “We never get to the point where we tell young people what choices they need to make. We inform them of the choices they have,” he said. The hope is that this strategy will result not just in reductions in HIV transmission but in reductions in sexually transmitted disease and teenage pregnancy as well.

Prevention and Treatment 

The second-most common cause of HIV infection in South Africa, after sexual transmission, is mother-to-child transmission. Every year, between 70,000 and 100,000 babies contract HIV from their HIV-positive mothers. The most well-known of these was Nkosi Johnson (see Nkosi’s Legacy). Generally, there is about a 30 percent chance that an HIV-positive mother will pass the virus on to her child. The risk goes up to about 50 percent if the mother breast-feeds, because the virus can be spread through breast milk. According to Spencer, a dose of a drug called nevirapine given to a mother at the onset of labor, as well as a dose given to the baby within six hours of birth, cuts the transmission rate in half.

Every year, between 70,000 and 100,000 babies contract HIV from their HIV-positive mothers.

The South African government, citing concerns about cost and safety, has yet to implement a program making nevirapine available in public hospitals and clinics. This has brought them under heavy criticism from many quarters. Nevirapine has been approved for use in preventing mother-to-child transmission by both the U.S. Food and Drug Administration and the World Health Organization. In addition, Boehringer Ingelheim, the German company that makes nevirapine, has offered to provide the drug free of charge to the South African government for the next five years. Increasingly the provincial governments, desperate to reduce their numbers of HIV-positive babies, are breaking rank with the government and are pledging to provide the drug in their hospitals.

According to Whiteside and Sunter in their book AIDS: The Challenge for South Africa, “While prevention efforts may aim to lower the number of new infections, the reality is that—without affordable and effective treatment—AIDS will still be increasing long after the HIV tide has been turned.”

In developed nations, the advent of highly active antiretroviral therapy (HAART) has reduced HIV/AIDS to, at best, a manageable chronic condition. But because it is a multiple drug therapy, HAART is expensive, especially for developing nations with limited healthcare budgets. It is equivalent to providing lifelong chemotherapy to HIV-infected patients. Adding to the expense, patients on HAART require close medical supervision for drug resistance.

We asked Sunter what he thought about providing HAART to the millions of HIV-infected South Africans. He explained that while the therapy is seen as the “gold standard” in AIDS treatment, there are more affordable options that could be implemented; for example, treating opportunistic infections like pneumonia and tuberculosis, which become common as the immune system weakens. So rather than feeling helpless about not being able to afford HAART, he suggested, “we should be asking what kind of treatments we can afford up to the point of triple drug therapy.”

Nkosi’s Haven is in many ways a model of what can be done to care for those who are infected. The HIV-positive mothers who live there help with the day-to-day household chores and foster the resident AIDS orphans as long as they are still well enough to do so. Johnson told us that if the women weren’t at Nkosi’s Haven, they would be on the streets. “One mother was under a bridge with two children,” she said.

We met a hapless teenage mother at the facility, who had a little girl about three years old and a newborn baby. Both were HIV-positive. When I instinctively picked up the sleeping baby, its tiny hand clutched at the edge of my dress and wouldn’t let go. Then the three-year-old walked into the room. Her large, plaintive eyes met ours, and we melted. Her spindly arms reached out for comfort and security, and for the rest of our tour she delightedly followed us. It was heartrending to leave her behind.

All the mothers and children we saw at Nkosi’s Haven will likely die of AIDS-related illnesses in the next few years. Meanwhile, the home provides warmth and comfort, emotional support, education opportunities, a better diet and limited access to drug treatments.

Two Kinds of People 

“There are only two types of South Africans left: those who are infected and those who are affected,” said Sunter. Because HIV/AIDS affects people in their prime productive and reproductive years, the economic impact of the epidemic is going to be felt for many years to come. A report released shortly before our visit by the South African Bureau for Economic Research (BER) estimates that the gradual effect of HIV/AIDS will cause South Africa’s gross domestic product to drop 5.7 percent by 2015. The resulting impact on the labor force means that compared with a no-AIDS scenario, South Africa’s total labor force will drop 21 percent by 2015. 

Whiteside and Sunter note that the economic impact of the epidemic may be magnified because of South Africa’s extremely small pool of skilled labor and higher dependence on such labor compared with other countries in the region. The BER report estimates that by 2015, the number of highly skilled workers will decline by 16.8 percent.

The HIV/AIDS epidemic in South Africa is also producing a dramatic increase in orphans. By 2010 there will be an estimated 2.5 million orphans under the age of 15. Again according to Whiteside and Sunter, “Around half of all people who acquire HIV become infected before they turn 25 and typically die before their 35th birthday. This age factor makes AIDS uniquely threatening to the bringing-up of children.”

Not one family that we have approached when we have lost a mother has been prepared to take on the orphans. Not one.”

Gail Johnson

Johnson told us that because of financial hardship and the stigma of HIV/AIDS, extended families are often uninterested in caring for orphans. “Not one family that we have approached when we have lost a mother has been prepared to take on the orphans,” she said. “Not one.” Nine out of the 29 children living at Nkosi’s Haven are AIDS orphans.

“Love Changes Things” 

We were continually impressed with the dedication of the people we met in South Africa. Spencer, who sees his role as a healer, says, “That is what God wants me to do, and that is what I do to the best of my ability.” He told us about the staff at Nazareth House, a Catholic-supported home for HIV-positive children. “It’s remarkable,” he said. “Sister Teresa, who runs that home, will say to me, ‘David, you know they don’t have money for antiretrovirals.’ But, she says, ‘Love changes things.’ It will bring tears to your eyes, because it is true.”

When we asked Johnson what kept her motivated, she was characteristically forthright. “Cigarettes and coffee,” she said. Then she added, “I don’t know. It’s depressing, it’s horrendous, but I’ve got a sense of humor.”

Sunter noted, “I think it’s most important that people in the rest of the world realize that there are some exceptionally good nongovernment organizations [NGOs] in this country doing frontline work, keeping people alive, assisting people under the most extraordinarily difficult circumstances. But unfortunately, with the worldwide economic downturn, the kind of money that has been coming from the United States and Europe to fund these NGOs has actually been declining.”

Johnson expressed concern that the terrorist attacks on the United States would result in further reductions in HIV/AIDS funding. “Sooner or later we have to take responsibility for our actions, for what is happening in our country,” she said. “But there is no doubt, we need help on this one.”

Carpe Diem 

Slowing the pace of the HIV/AIDS epidemic in South Africa is not impossible. Other African countries, notably Uganda and Senegal, have heeded the warning signs and implemented education programs that are successfully reducing the HIV infection rate.

“When we look back at the ’90s in South Africa, undoubtedly our response to HIV is going to be the biggest cause for indictment,” said Harrison of loveLife. “We still have an opportunity to fundamentally change the course of the epidemic in South Africa. That epidemic is being driven by the fact that our children, less than 15 years of age, are becoming sexually active just as the epidemic is peaking. The consequence is that up to half of our children under 15 risk being infected by HIV and AIDS.” 

He remarked, “We have to sustain the effort at an incredible pace, but also in incredible intensity, where we literally are engaging the whole community. What this requires is an unprecedented national effort that becomes bigger in scope, driven by the urgency of seizing the day, changing the course of the epidemic, and then sustaining the reductions over a long period.”

In the meantime, South Africans will have to wait a little longer for their renaissance.