Contributing to genocide

By giving HIV deniers a global platform, South African President Mbeki has put countless lives at risk.

By Kate Scannell
July 28, 2000 11:00PM (UTC)
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Paul's parents carried his limp, cachectic body from their fancy car. They placed Paul in a hospital bed on our AIDS ward. They told me, Paul's doctor, that they had driven from Oakland, Calif., to Tijuana, Mexico, to fetch their dying son and bring him home. The ozone therapies, curative fruit juices, cleansing enemas, nutritional supplements "and whatever else he tried" at the special clinic had failed to rid their son of AIDS. Minutes later, after they left, Paul awoke enough to recognize me. I told him that I'd like to sit him up to listen to his lungs. He closed his eyes and nodded, and, with one arm, I pushed up his thin trunk to a sitting position while adjusting my stethoscope with my free hand.

At first, I thought that Paul might be wearing an oddly knit undershirt, full of holes that my arm and fingers sensed as they pushed against his back. But when I removed his vest and pulled his shirt up, I saw that the holes bore through his skin. Dozens of irregular wounds, some weeping pus, spread across his shoulders. I stopped my exam and laid Paul back on the bed. I turned his face to mine and asked: "Paul, what are these holes?"

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From the despair in his eyes, I immediately understood why the holes were there. We cleaned and dressed his wounds, and gave him fluids. Later, when Paul regained sufficient strength to explain, he told me that the holes had been caused by chemical compounds containing DMSO (dimethylsulfoxide), a worthless solvent that was supposed to draw out the human immunodeficiency virus from his body. He died a few days later.

As a physician who directed an AIDS ward during the early years of the epidemic, I remember scores of young men and women with AIDS whose dark, hollow eyes, vacated of hope, looked into mine. Many of these patients clutched talismen: magical herbs imported from Brazil or boxes of mysterious compounds concocted by local "underground labs." You do not forget those looks. They are the desperate, haunting looks of dying people who want, however obliquely, to see what they know does not exist. These young men and women died with compound Q in their pockets, AL-721 in jars, Iscador on the nightstand, hypericin (St. John's wort) under the bed -- old medicines that had proved virtually powerless against the disease that had overrun their bodies. They died with newspaper clippings announcing the coming of a new drug called AZT taped to their walls or tucked under their pillows.

I remember how the world changed when AZT arrived. It was a potentially toxic drug, but it brought the first real light of hope back into people's eyes. It had demonstrable activity against HIV, and, most important, some AIDS patients who took AZT actually got better. You could literally watch skeletal bodies flesh out to three-dimensional forms. In conjunction with therapies that helped prevent other infections, for the first time, patients began to live a little longer than the nine-to-11-month life span to which they had been destined before. Other drugs active against the retrovirus HIV (anti-retroviral therapies, or ARTs) were developed later and shown to prolong human survival and make people healthier. It was these drugs that so many of my now-dead patients had been hoping for during the 1980s. They wanted the chance to have more of their lives. Many would have opted for anti-retroviral therapy and some would have lived a lot longer.

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But if the "HIV deniers" had their way, such powerful therapies would not be available today. These vocal dissidents insist that HIV does not exist, charging that the drugs that have been developed to combat it are part of a massive medical hoax propagated by a greedy pharmaceutical industry, a lockstep scientific community and a vapid media machine. In their view, AIDS is not a contagious disease at all, and so ARTs are toxic, if not downright evil, and safe sex is irrelevant. In my most generous moments, I understand their erroneous thinking as a byproduct of fear and anger about HIV, a lack of experience with the human history of AIDS and the usual anti-establishment sentiments. But, most of the time, what I see is that the cost of their rhetoric is an unknowable number of lives that could be lost because of it.

While most HIV deniers (who are mostly white Americans) neither give care to people with AIDS nor conduct HIV research, they do spend a considerable amount of time building a political base. For many years their ideas have languished in the margins of both the scientific and activist communities, but this summer they got a boost when South African President Thabo Mbeki allowed the work of famed HIV denier and University of California at Berkeley professor Peter Duesberg to be incorporated into this month's 13th International AIDS Conference in South Africa. Duesberg, whose AIDS research has been criticized by most AIDS researchers, has consistently maintained that HIV does not cause AIDS. He cites as evidence the failure of HIV to comply with specific scientific postulates (the "Koch postulates," created in 1840 and 1890, before the discovery of viruses) or to follow cardinal rules of virus behavior. Rather, Duesberg and the deniers believe that AIDS is caused by chromosomal damage, certain lifestyles, drug abuse, malnutrition, poor sanitation and parasitic infections.

Deniers pose some genuine challenges to current theories about HIV and its role in the development of immune suppression and the diseases (like cancers and infections) that follow and constitute AIDS. (You might want to read Bruce Mirken's thoughtful review of the discourse.) But the science of HIV research is young, it continues to unfold and many questions about the virus remain unanswered. Where these questions remain, deniers see fraud while AIDS researchers see an opportunity for further inquiry.

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While deniers rigidly believe that HIV is nonexistent or incidental, they have yet to articulate a coherent explanation for its nearly universal presence in people with AIDS. Nor have they explained the documented efficacy of drugs that specifically suppress HIV in prolonging AIDS patients' lives and preventing infection in newborns of HIV-infected women. Furthermore, in the face of such data, they have not articulated a moral defense for their advice against anti-retroviral treatments that actually work to save human lives. At best, their position is surreal; at worst, it is blatantly immoral.

Deniers also believe that AIDS researchers are somehow organized into a conspiracy that profits in its singular and rigid focus on HIV as the cause of AIDS. Those of us who actually do research find this humorous. Like their hero, Duesberg, we tend to be a fiercely independent and competitive lot who keep our research secret from colleagues, hoping to be the one to find the new truth and debunk the old one. Any "mainstream" scientist would love to discover another cause of AIDS. The rush of excitement and notoriety that such a discovery would bring are what researchers strive for during their repetitive, dreary work in crowded and underfunded labs. Still, no one so far, including Duesberg, has found another cause for AIDS.

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Interestingly, there exists much agreement between deniers and AIDS researchers. For example, both camps concur that poor nutrition, poverty, homelessness, drug abuse and infections can accelerate or promote the development of AIDS. Similarly, they agree that anti-retrovirals are toxic therapies. How these mutually accepted views have been misrepresented as disagreements by the deniers is mysterious -- the tactic has the feel of a very thin line drawn in sand. Meanwhile, a war of rhetoric rages, threatening to blur the basic and irrevocable facts: So far deniers have found no cures for AIDS, and they are doing absolutely nothing to diminish contributing factors like poverty and malnutrition. AIDS researchers and activists, in contrast, are moving forward in search of less toxic ARTs.

Before the deniers caught Mbeki's favor, the scientific community could afford to view them as deluded voices screaming in the wind. After all, as long as the scientists shared an overwhelming consensus that the deniers had got it wrong, their anti-retroviral campaign could go only so far. But with the dissidents' growing public platform on the world stage, researchers have stepped up to the front lines. In anticipation of the AIDS conference in Durban, South Africa, more than 5,000 global AIDS scientists signed the "Durban Declaration." Published in the prestigious scientific journal Nature, the declaration was a sharp rebuke to Mbeki's refusal to acknowledge that HIV causes AIDS. The declaration states that the link between HIV and AIDS is "clear-cut, exhaustive and unambiguous ... HIV causes AIDS. It is unfortunate that a few vocal people continue to deny the evidence. This position will cost countless lives."

At the AIDS conference, more than 10,000 attendees heard Winnie Mandela, head of the African National Congress' Women's League, angrily proclaim, "Let me start by asserting what appears to have become less obvious in South Africa. AIDS exists! HIV causes AIDS. It is roaming the world, attacking the poor and marginalized. In our beloved Africa, it is swallowing up families and communities and villages."

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At the closing ceremony, South Africa's former president, Nelson Mandela, joined the conference and offered what could only be taken as an attempt to reconcile both sides and thereby sidestep the maelstrom of controversy. "The ordinary people of the world -- particularly the poor who are on our continent who will again carry a disproportionate burden of the scourge -- would wish that the dispute about the primacy of politics or science be put on the back burner and that we proceed to address the needs and concerns of those suffering and dying," he said. "And this can only be done in partnership. The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale."

But for many researchers, such conciliatory gestures could not elide the potential dangers of the deniers' position. Like many AIDS doctors I know, Paul Volberding, a UC-San Francisco professor of medicine who directs the Positive Health Program at San Francisco General Hospital, refrained from attending the AIDS conference, partly in response to Mbeki's stand. "In the midst of a raging epidemic that threatens the survival of his country, we expect the strongest and most direct leadership from the highest levels," he explained. "The sad situation in South Africa, and the encouragement of President Mbeki's distraction from the task at hand by American AIDS denialists, underscore the need for clarity. HIV causes AIDS, and the continued devastation of the epidemic can only be limited by programs that help inform people of all lands how HIV transmission can be prevented. It's time to get to work."

Indeed, many AIDS scientists and activists worry that if Mbeki promotes the view that AIDS is neither infectious nor caused by HIV, South Africans will ignore effective behavioral strategies (like safer sex) that prevent HIV transmission. Reportedly, one in 10 of South Africa's 43 million people are already HIV infected. If they fail to engage in safer sex and reject anti-retrovirals, the National Health Research Development Program of Health Canada projects that South Africa will witness 2.3 million new AIDS cases between 2000 and 2005, and that the country's life expectancy will decrease to 46.5 years.

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While some public health experts have pointed out that ARTs are far too expensive to treat every HIV-positive South African adult (the drugs cost $12,000 a year, but per capita healthcare spending is $268), but the use of ARTs with pregnant women could still do some good. At a cost of $50 per mother, short-course, single-drug ART would reduce perinatal transmission by 40 percent and could prevent 110,000 HIV-positive births by 2005 for $54 million. Not only would this save the government millions of dollars in healthcare costs for sick infants, it would shore up the workforce for the country's tenuous economy.

But if Mr. Mbeki does not believe that HIV causes AIDS, then anti-retrovirals are a moot point, and "cost is not a problem." Some observers wonder if this is exactly the purpose for Mbeki's denial.

Dr. Bridget Farham, the health and fitness editor for iafrica.com, writes: "I suspect that neither the Department of Health nor our president truly believe that HIV does not cause AIDS. They have been overwhelmed by a problem that appears insoluble. To me it seems that they are clutching at any straw which may prevent the necessity of telling us that they are not going to spend millions on AIDS treatment and prevention programs -- because, they will claim, we don't know what causes the illness. They are looking for a rational reason for an irrational act -- leaving us without the bulk of our economically active population within the next five years because they had neither the will nor the resources to confront the problem."

In an ongoing Internet discussion on the topic, contributors suggest that Mbeki's contention that AIDS is caused by poverty and malnutrition allows him to blame the AIDS epidemic on apartheid in order to draw attention away from his failure to manage it. Others claim that the government will not spend money to save children of HIV-infected pregnant women because the mothers will die and leave even more orphans under government care.

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Some have suggested that Mbeki's refusal to acknowledge the virulence of HIV and provide ART for pregnant women stems from his post-colonial wariness and his need to find a "uniquely African solution." Irrationally, he postulated that ART use "may not work with African AIDS patients" because most of them are heterosexuals and many patients in the United States who use ART have contracted AIDS through homosexual sex. This remark is stunning for its inaccuracy (there are now more heterosexual HIV-infected patients in the United States than homosexual) and for its bizarre notion that the biology of gay men is somehow different than that of heterosexuals.

The fact is that he has aligned himself with a handful of white American deniers and disagreed with a vast multicultural group of world researchers who claim that HIV causes AIDS. In his alliance with people whose stubbornly abstract beliefs would deny millions of impoverished people one viable if partial remedy, Mbeki's attempt to forge a "uniquely African solution" looks like a familiar picture of valuing political power over human lives.

It is especially poignant to watch Mbeki deny the central role of HIV in the deaths of millions of his countrymen at a time when the West is finally offering his country what seem to be substantial financial remedies for the AIDS epidemic. Last month, five global pharmaceutical companies and the United Nations began negotiations to lower the cost of drugs up to 90 percent for the treatment of HIV/AIDS in sub-Saharan Africa. Then President Clinton ordered that sub-Saharan Africa receive special leeway in importing or manufacturing patented ART. Finally, Western countries have recently launched new initiatives in debt reduction.

But as Mbeki knows all too well, even these multimillion dollar offerings will not stem the approaching tidal wave of AIDS in his country. South Africa lacks clean water, basic healthcare and nutrition that might make the new AIDS therapies effective. Mbeki has inherited a monstrous multi-tentacled problem fed by poverty, malnutrition, poor sanitation, migrant labor, commercial sex work, inadequate health care, STDs, negligible birth control and apartheid's legacy of social and familial disintegration. It's no wonder he's grasping at straws, trying to explain that people will continue to die of AIDS in South Africa because the real origin of the disease has not been discovered, not because South Africa doesn't have the resources necessary to save its people.

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This is why the deniers opportunistic abuse of Mbeki's vulnerability is so sinister. Why don't deniers do something constructive about their beliefs? Finding their holy grail -- whatever they think causes AIDS -- is one thing; providing education and nutritious food to sub-Saharan Africans, improving their housing and sanitation or providing education and antimicrobials for parasitic infections through real action would be commendable.

But the deniers show no signs of curbing their program of noxious political grandstanding. Recently in San Francisco, a group plastered the city with posters proclaiming "AIDS is Over," while others met with conservative congressional members to urge a decrease in AIDS funding. They barged into an educational forum for people living with HIV and claimed that ART killed people.

As Brenda Lein, moderator of the forum, put it, "of all the forces we have fought against in the battle against AIDS, nothing short of the virus, HIV, itself has been directly responsible for more deaths and suffering than the message being preached by these people. They are sowing the seeds of the future of the epidemic while attempting to divert those already ill from taking advantage of advances in therapy. It's mind-boggling."

As AIDS increasingly affects the poor and disenfranchised people of the world, one wonders about the political motivations of deniers who want HIV research to stop, who would capitalize on the desperation of leaders of poor economies. As AIDS claims increasingly larger percentages of women and non-white people, one wonders about the agenda of a small group of mostly white Americans who work so hard to make life-prolonging therapies unavailable and who discourage safer-sex practices. While denial, in a multiplicity of forms, has been part of the global landscape of AIDS from the beginning, it has never carried such an overtly lethal potential.

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While deniers myopically focus on rare abstract anomalies, missing the forest by obsessing about isolated trees, real people have died without ART treatments. Real people are living because of them. While the deniers cling to theory, and Mbeki counts the number of phosphorylation particles that dance on the head of a cell in an effort to discredit anti-retroviral drugs, millions of people are dying from a preventable infection. Intended or not, the genocide is occurring.


Kate Scannell

Kate Scannell is an assistant clinical professor of medicine at UC-San Francisco and author of the book "Death of the Good Doctor: Lessons From the Heart of the AIDS Epidemic."

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