Death Watch: S. Africa's Advances Jeopardized by AIDS
Washington Post- Thursday, July 6, 2000
By Jon Jeter
Second of three articles
JOHANNESBURG – The last days of apartheid were closing in in 1993 when South Africa's government-in-waiting summoned nearly 50 public health experts to a conference hall just north of here. The African National Congress, soon to turn from rebels to ruling party, wanted help devising a strategy to fight an advancing AIDS epidemic.
Expectations were soaring. Certainly, money was tight and there was much to be done in the top-down transformation from white-minority rule that would follow South Africa's first democratic elections in a few months. But if any developing country could provide a model for standing up to the epidemic, surely it was this one, with its industrialized economy and educated, democratic, socially conscious leaders waiting in the wings.
Tensions surfaced at the inaugural meeting of the AIDS panel, however. Nkosazana Zuma, whom President Nelson Mandela would appoint South Africa's first black health minister, insisted on steering discussion away from economic factors that helped spread AIDS but were also central to the ANC's higher priority of creating jobs and investment. When Helen Schneider and
Liz Floyd, two whites who had supported the black majority's long liberation struggle, repeatedly pressed for an AIDS policy
that addressed the role of migrant labor, Zuma finally turned to a colleague in exasperation.
"White people," she complained, "just don't understand the issues."
Six years into the ANC's imperfect but breathtaking overhaul of South Africa, the government's failure to cope with AIDS jeopardizes practically everything the country has achieved since the end of oppressive white rule. More people are infected with HIV in South Africa than in any other country – one in five adults in a population of about 41 million. AIDS threatens to slow social change and undo economic development with the staggering costs of caring for the sick, the dying and those they leave behind.
Decoding South Africa's ineffectual official response to its most dire public health crisis is complicated. But if anything connects the series of political missteps, mishaps and misunderstandings culminating with President Thabo Mbeki's recent blunt questioning of long-accepted scientific conclusions about the nature of AIDS and its treatment, it is the raw and deep wound left by the racial caste system of apartheid.
Confronted with forecasts of a cataclysmic plague at precisely the same euphoric moment that their epic struggle was on the verge of victory, the ANC approached AIDS at first with a mixture of denial, resentment and tentativeness. Both high expectations and skepticism among some in the ability of blacks to govern encouraged the ruling party to embrace quick fixes against the disease. When these measures failed, the leaders bristled at the ensuing criticism, alienating even their closest allies.
After decades of seeing friends and relatives jailed, poisoned and even sterilized by whites, the ANC shut clinics that could have been useful in treating and counseling patients infected with HIV, largely because the facilities were heavily staffed by white doctors, according to people involved in AIDS policy. After negotiating an uneasy coexistence with the white minority, the new leaders' initial efforts to address the epidemic were slowed and even sabotaged by white civil servants inherited from
the apartheid era.
And when medical experts warned them that a homegrown vaccine was worthless, leaders from the president down plowed quixotically ahead. Those involved in the effort say they were convinced that they could redeem the indignities, insults and stereotypes that Africans had endured at the hands of whites by discovering a miracle vaccine for a disease that not even the
West could cure.
"I don't think anyone can give a simple explanation for why our AIDS program has failed," said Morna Cornell, director of the
AIDS Consortium, a non-profit counseling project. "But the race issue is huge. It's like we eliminated apartheid but it left behind this huge wall that none of us knew how to tear down or get around."
The irony is that, so far, the African country best prepared in material and political terms to provide hope against the epidemic has also proven among the least capable of overcoming economic inequality, bitter distrust and social barriers that fuel the spread of HIV and AIDS.
"AIDS is a devious disease," said Ralph Mgijima, an ANC provincial health officer. "It thrives on divisiveness."
For many of the 4 million South Africans with HIV and AIDS, the overwhelming majority of them blacks who have waited much of their lives for a government that represents them, the situation holds a bitter, more personal irony.
"It is very hard living your life with HIV," said Florence Ngobele, who was diagnosed with the virus that causes AIDS six years ago and lost her daughter to the disease. "And you almost feel like the government is trying to tell you: If you have HIV, we have nothing for you. We can't help you. [The government] has done a lot for this country but sometimes you catch yourself wondering: Did they free us just to watch us die?"
With thousands of exiles living in Zambia, Tanzania, Uganda and other African countries during apartheid, the African National
Congress – the biggest and most powerful anti-apartheid organization – recognized long before 1994 that a health crisis was in the making.
"By 1989, we could see AIDS all around us in the countries where we were in exile and we were already seeing some
HIV-positive comrades," said Mgijima, the ANC health officer, who was based at the time in Lusaka, Zambia.
In 1990, shortly after then-President F.W. DeKlerk released Mandela from prison and rescinded the ban on outlawed political movements, the ANC convened an AIDS conference in Mozambique's capital, Maputo. Chris Hani, who headed the ANC's guerrilla forces, Umkhonto we Sizwe or Spear of the Nation, and whose popularity at the time was arguably surpassed only by the iconic Mandela, spoke with great urgency.
"We cannot afford to allow the AIDS epidemic to ruin the realization of our dreams," said Hani, who was assassinated by white supremacists in 1993.
But the ANC's return to open politics coincided with a seismic shift in the spread of HIV. Largely isolated to white, gay men when it first appeared in the country in the early 1980s, the virus had by 1990 begun infecting primarily black heterosexuals.
"It was doubly stigmatized," said Mark Gevisser, a South African journalist who is writing a biography of Mbeki. "It went from being the 'Gay Plague' to the 'Black Death' and it really reinforced the stereotype of the supersexualized, irresponsible black male. This is the stigma that the exiles came home to."
As the ANC and then-ruling National Party engaged in tense negotiations for a transition to majority rule, the apartheid regime used fear of AIDS to undermine the popularity of their adversary. Fliers with crude depictions of black men began to appear in the black townships, warning that virus-carrying exiles were importing HIV to the country.
"That definitely put us on the defensive," said Smuts Ngonyama, an ANC spokesman. "We, on the one hand, understood that this was a disease that we needed to deal with. But we also resented the National Party's demonization of us as promiscuous . .
. and terrorists bringing death and disease home to our people. They were aggressively selling this stigma so that we couldn't stand on the moral high ground. People would say to us: 'You know, I'm just not sure about the ANC.'"
The advisory panel assembled by the ANC in 1993 and headed by Zuma devised an AIDS plan for the new government.
More wish list than blueprint, it prescribed $64 million worth of education programs, mass media campaign, free condoms and support programs for patients with HIV. It recommended creation of a national AIDS commission, modeled in part on an approach in Uganda that was then beginning to be hailed as a success.
The panel proposed running the anti-AIDS effort from the president's office to give it a high profile and bureaucratic authority with government ministries such as the labor department, which would be more likely to accept direction on strategies in the workplace for dealing with HIV.
Mandela's first budget included $15 million for a national AIDS campaign, rather than the $64 million proposed by the panel.
And he installed the initiative in the health department, headed by a mid-level bureaucrat rather than a deputy minister, eventually limiting the agency's scope and authority.
There were more immediate obstacles for the campaign in the months after the 1994 elections. As part of an agreement with the National Party, the ANC had promised not to fire white civil servants from the old regime. The apartheid government's HIV program was virtually non-existent and most bureaucrats were neither prepared nor helpful in developing a national AIDS strategy.
"None of the staff I inherited even knew how HIV was transmitted or the methods of prevention," said Quarraisha Abdool Karim, South Africa's first national AIDS director. "That's 12 people with whom I had to start from scratch with before I could even begin to implement a program."
Other administrators said they were met with hostility from bureaucrats. Floyd, the director of the AIDS program for Pretoria and Johannesburg, said that she wasn't assigned an office for nearly a year by the building manager. She bounced around
through six temporary offices and when she was finally provided working space, it was hardly bigger than a closet.
"We were working with people who could care less if black people died from AIDS. I refused to bring people into the office [because] I was afraid they wouldn't take AIDS seriously if they saw the space I had been allocated," she said.
Said Glenda Gray, a senior researcher in the maternity ward at Chris Hani Baragwanath Hospital in Soweto, the country's
biggest medical center: "I don't know how you get a national AIDS program to work when you've inherited a civil service that
you don't trust and that doesn't trust you and wants to stick it to you at every turn."
The one salvageable component of the apartheid regime's HIV efforts were 18 AIDS Training, Information and Counseling Centers, known by their acronym as ATICCs. Far from perfect, the clinics were located mostly in urban neighborhoods not easily accessible to blacks who lived in segregated townships or in the countryside. Still, the centers provided valuable testing and counseling HIV services for patients as well as much-needed training for inexperienced staff, many experts believed.
But the popular perception of the ATICCs, shared by many in the ANC, was that they were staffed mainly by gay and liberal whites.
"You had people running the ATICCS set and we were concerned about that," said the ANC's Mgijima. "Could they communicate with Africans? It's not that they weren't well meaning, but a lot of blacks here are isolated from information and remember the apartheid era's sterilization programs. So if someone from the ATICCs handed him a condom he's likely to think that this is just an invention of that person meant to depopulate African communities. The ATICCs became irrelevant in our minds."
The clinics' HIV programs were marginalized and subsequently abandoned in many communities. "The ATICCs . . . could have been developed and used as a base to build on," said Mary Crewe, director for the Center for the Study of AIDS at the University of Pretoria and a former ATICCS worker at Johannesburg's Esselin Street Health Center. "Now instead of having more HIV services we have less."
Within a year after the 1994 elections, the number of South African adults infected with HIV had risen to one in 10 – up
from about .76 percent in 1990. Immigration across borders that had been closed by the apartheid regime was ending isolation
that had spared South Africa from some of the soaring infection rates of neighboring countries.
Overwhelmingly endorsed by voters, the ANC was now feeling the pressure to deliver housing, jobs and health care to an impoverished black majority. The party was also under greater scrutiny from major newspapers, most staffed and owned by whites, which supported democracy but were unsparing in criticizing the government.
Without consulting her panel of independent advisers, Zuma circumvented state contracting procedures and spent $3 million
– roughly a fifth of the department's entire annual anti-AIDS budget – to produce an AIDS awareness play that capitalized on the popularity of Sarafina, the musical about poor children growing up in a South African township that became a Broadway production and Hollywood movie.
When news of the contract was leaked, newspaper columnists and cartoonists had a field day. Activists panned the play's anti-AIDS message as simplistic and questioned whether it was a good use of limited funds.
With the support of her two mentors, Mandela and then-Deputy President Mbeki, Zuma wondered aloud if her critics would have been so upset if the playwright had been white instead of black. The contract was subsequently canceled and Mandela later acknowledged that Sarafina II was one of the biggest mistakes of his term. But the damage was done.
"Sarafina was the biggest mistake . . . because it made AIDS into a joke," Cornell said. "And it put [AIDS activists] in an adversarial relationship with Zuma that we never quite managed to mend. From that point on, if you criticized the government you were dismissed as unpatriotic, unsupportive and generally racist. I've always felt that as a white woman I had to really watch what I said."
Less than a year later, Zuma unexpectedly announced her intention to require people with HIV to make their status public.
Pushing the disease into the sunlight, she argued, would lift the cloak of secrecy that abetted its transmission from one sexual
partner to another, as well as diminish the stigma surrounding HIV. The term was still taboo in parts of South Africa, and fear
had led mobs to attack people with HIV.
Cornell and other activists objected. Forcing someone to disclose a diagnosis could lead to further isolation, anxiety and even depression, all of which can accelerate the onset of full-blown AIDS. With a flimsy health care system, notification was also impractical. And lastly, there was the issue of fairness.
"How can the government make someone publicly reveal their HIV status when they have nothing to offer them in return?" asked Cornell.
When reporters questioned Olive Shisana, the director general of the health department, whether disclosure requirements were
a violation of civil rights, she answered that confidentiality was a "Western, gay" preoccupation.
"There is in this country a long history of whites telling us what do with our bodies," said Zweli Mkhize, the ANC's health
minister in Kwa Zulu Natal province, "and you'll find some resentment of that still. There has always been this debate about
Africans determining what is right for Africans, not whites."
When the AIDS advisory panel requested a meeting with Zuma to discuss confidentiality, health officials assured them that a
meeting would be arranged. While awaiting word from Zuma's office, the panel chair received a letter from Shisana in late
1997. The panel had been disbanded.
The ANC's policy of pushing AIDS into the open did not extend to its top officials and policymakers. By 1997, a clear pattern had emerged. Other than responding to criticism or journalists' questions, few cabinet ministers other than Zuma ever mentioned the virus in public.
Even the revered Mandela made no public mention of AIDS until he delivered a speech in late 1997 to the World Health
Organization, and that was in Switzerland. His first public remarks on the subject in South Africa were not spoken until 1998, more than 3 years into his presidency.
"Indeed, measured minute by minute, during his presidency, Mandela probably spent more time with the Spice Girls and
Michael Jackson than he did raising the AIDS issue with the South African public," wrote South African journalist and researcher Hein Marais.
Clearly, government officials had a lot on their plate; they had a country to build. But some believed that the silence reflected the ANC's ambivalence about AIDS. On one hand, the party clearly recognized its impact on the population. On the other, there was a sense of shame rooted in Africa's conservative, male-dominated culture in which talking about sex and wearing condoms were discouraged.
"For all his greatness," said Cornell, "Mandela is still a kindly, respectful, 83-year-old African male. Talking about sex in public cannot come easily for him."
That silence, many AIDS activists feared, fueled suspicions by some rural blacks that AIDS didn't really exist and was a ruse to depopulate African communities through condom use, AIDS activists say.
"There is such denial in this country," said Edwin Cameron, a High Court judge who is the country's highest ranking public official to acknowledge that he has AIDS. "If you believe that interventions by a political leader can make a difference then you have to believe that one of the most extraordinary icons of this century could have convinced young men and women to wear condoms."
The government today points to successes in AIDS prevention: It has distributed 140 million condoms, trained more than 10,000 teachers to conduct AIDS education, and improved access to health care. A nationwide publicity campaign has hoisted arresting billboards across Johannesburg, Cape Town and Durban advocating safe sex.
Still, while 85 percent of South Africans in a recent poll said they now know how HIV is transmitted, only 10 percent said they used a condom in their last sexual encounter.
In January 1997, Zuma invited to a cabinet meeting three Pretoria researchers who said they had discovered a drug that could
cure AIDS. The scientists had used skin patches of a compound called Virodene P058 on HIV-infected volunteers and
reported the preliminary findings to Zuma. She appealed to the cabinet for funding and tried to speed the drug's approval with
the Medicines Control Council, the equivalent of the U.S. Food and Drug Administration.
The cabinet, which gave the researchers a standing ovation at the end of their 90-minute presentation, believed the discovery would validate South Africa's black majority in much the same way that Christiann Barnard's first successful heart transplant in
1968 affirmed apartheid South Africa to the world, said Salim Karim, director of HIV prevention and vaccine research for the Medical Research Council.
Newspapers championed the discovery of Virodene as a miracle cure. But Peter Folb, the Medicines Control Council director, said the researchers had not followed accepted practices and further investigation was needed before the drug could be approved. Both Zuma and Mbeki, still deputy president, pressured Folb to approve the drug.
When the opposition Democratic Party criticized the ANC's endorsement of Virodene, Zuma responded, "The DP hates ANC supporters. If they had their way we would all die of AIDS."
Virodene was soon discredited as an effective treatment, and was judged to be harmful after it was revealed that its active agent was an industrial solvent. Quarraisha Karim, the first director of South Africa's national AIDS program, said that the government's policy on the drug was driven entirely by politicians without consulting either herself of any advisers with technical experience.
"There was this sense that this drug would be the thing that offset the perception . . . of Africans as substandard and less than capable," Karim said. "All eyes were upon [the ANC] and the expectations were very high and they were really trying to find their feet but they didn't want to exercise caution," she said. "This was driven by this need to show the world: 'Yes, Africans can do this. We can do this. Virodene became our redemption'."
Folb, who is white but is a member of the ANC, recalled one late night conversation with Zuma, who was pressing him to approve Virodene despite his concerns that it hadn't been adequately tested. Folb politely but firmly repeated his refusal.
Finally, a frustrated Zuma blurted out: "You're ANC. Why won't you back me on this?"
Model of What Went Wrong
In 1990, the prevalence of HIV infection in South Africa and Thailand were both less than one percent. Today, Thailand's rate is 2.15 percent; South Africa's is 19.94 percent.
As an international AIDS conference opens this weekend in Durban, on South Africa's Indian Ocean coast, the country is a model not of progress against the disease, but of things gone wrong. Mbeki – described by friends and even critics as among the smartest and most capable leaders in the developing world – has become better known internationally for his skepticism about conventional AIDS treatments than for any other reason.
Some see parallels between the Virodene episode and Mbeki's staunch refusal to support even low-cost antiretroviral drugs for pregnant women, despite research indicating that the medicine can reduce the transmission of HIV from mother to child by as much as half. In championing an African solution, Mbeki has questioned whether the drugs are toxic, and whether Western remedies apply in sub-Saharan Africa.
There are no such questions in the maternity ward at Baragwanath Hospital in Soweto where 40 percent of the 600 babies delivered each month carry the virus. "I just want to know," said one gaunt woman, who is nine months pregnant and infected with HIV, "what kind of treatment is available that might help us and our children live longer."
The hospital's donated supply of AZT will last only a few months more. Then administrators will have only counseling to offer pregnant women, said Florence Ngobele, who heads a support group of expectant mothers who have tested positive for HIV.
The irony, she said, "is that this is what I would have expected from the apartheid government, not the new South Africa. They have broken our hearts."
© 2000 The Washington Post Company