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The Social and Symbolic Power of AIDS Denialism

Article

Nicoli Nattrass

Volume 36.4, July/August 2012

AIDS denialism has proved socially resilient because dissident “hero scientists” provide legitimacy, “cultropreneurs” offer fake cures in the place of antiretroviral treatment, and HIV-positive “living icons” seem to provide proof of concept.

The discovery of antiretroviral therapy (ART) transformed HIV infection from a death sentence into a manageable chronic disease.1 Yet a small group of “AIDS denialists” rejects the science underlying ART, believing it rests on rotten foundations and that the therapy is toxic. These ideas have had deadly consequences. Most infamously, South African president Mbeki set up a panel of AIDS denialists and HIV scientists to debate the issue while delaying the use of ART in the public sector. Over 330,000 South Africans died unnecessarily as a result.2

In an earlier article3 for the Skeptical Inquirer I described the different varieties of AIDS denialism, highlighting the views of Berkeley virologist Peter Duesberg, who believes—despite never having done any clinical research on HIV—that it is a harmless “passenger virus” and that AIDS is caused by recreational drugs, malnutrition, and even antiretroviral therapy itself. He and the other AIDS denialists on Mbeki’s panel recommended that HIV testing be halted and that immune deficiency be treated through “massage therapy, music therapy, yoga, spiritual care, homeopathy, Indian Ayurvedic medicine, light therapy and many other methods.”4

This article draws on my recent work revisiting the problem of AIDS denialism, this time focusing on its organized character.5 I argue that the symbiotic connection between AIDS denialism and alternative healing modalities is facilitated by a shared conspiratorial stance toward HIV science, which has had powerful community-building effects. AIDS denialism gains social traction through four symbolically and organizationally important roles: the “hero scientists” (notably Duesberg) who provide a patina of scientific legitimacy for the movement; the “cultropreneurs” who offer fake cures in the place of ART; the HIV-positive “living icons” who seem to provide proof of concept by appearing to live healthily without ART; and the “praise singers,” sympathetic journalists and filmmakers who publicize the movement.

Figure 1 shows the organizational connections between the key AIDS denialists. Duesberg is particularly in­fluential. He sits on the boards of Rethinking AIDS (an organization that promotes his views about HIV) and Alive and Well (founded by HIV-positive “living icon” Christine Mag­giore to promote alternative therapies). He also served on Mbeki’s Panel and received extensive coverage in House of Numbers, a recent “documentary” funded in part by Rethinking AIDS.

Figure 1Figure 1. AIDS denialist networks. Names marked by an asterisk (*) are also linked to Mattias Rath (The Rath Health Foundation); name marked with a pound sign (#) was invited onto Mbecki's panel but did not attend; names in italics are journalists/filmmakers.

Duesberg does more than merely question or rethink HIV science: he actively publicizes his unfounded claims. Mark Wainberg, a microbiologist and past president of the Inter­national AIDS Society, called him “probably the closest thing we have in this world to a scientific psychopath.”6 Duesberg’s supporters, however, interpret such criticism as evidence of his unfair oppression by a corrupt “AIDS establishment.” Accord­ing to Celia Far­ber, Duesberg’s leading praise-singer, “As AIDS grew in the 1980s into a global, multibillion-dollar juggernaut of diagnostics, drugs, and activist organizations, whose sole target in the fight against AIDS was HIV, condemning Duesberg became part of the moral crusade.”7

David Rasnick, who writes with Duesberg, is also a hero scientist of sorts. He assisted the Rath Health Foundation with its illegal South African trial (which resulted in several unnecessary deaths) in which AIDS patients were taken off antiretroviral therapy and put onto high-dose vitamin products in­stead. The Alive and Well website claims he is the creator of protease inhibitors, but his name does not ap­pear on any of the relevant patents. More important is Kary Mullis, an eccentric chemist who won the Nobel Prize for inventing the polymerase chain reaction. Mullis, who openly discusses his experimentation with hallucinatory drugs and alleged encounters with extraterrestrials, has never worked on HIV; however, precisely because he won a Nobel Prize, he is a symbolically important hero scientist.

Robert Leppo, a venture capitalist who sits on the board of Rethinking AIDS, funds Duesberg’s laboratory as well as Rethinking AIDS. Farber describes Leppo as the “reluctant hero of the underground” who “saved Dues­berg from utter dissolution” after his federal funding was supposedly cut off “as punishment for advancing a scientific hypothesis that differed from that of the establishment.”8 Leppo was also the executive producer of an AIDS denialist film, The Other Side of AIDS, the promotional material of which describes him as “deeply involved in researching new medical protocols and alternative therapies, many of which are AIDS related.”

The link between AIDS denialism and alternative medicine is embodied by what I term “cultropreneurs.” Cul­tro­preneurs use AIDS denialism and related conspiracy theories to undermine the credibility of antiretroviral therapy—a convenient marketing device for their alternative therapies. For example, the Rath Health Founda­tion describes antiretroviral therapy as a form of genocide inflicted on society by the “pharmaceutical drug cartel.”9 Gary Null, who sells a variety of books and alternative healing products, makes similar conspiratorial suggestions and often features AIDS denialists on his radio show.

A common notion promoted by cultropreneurs is that AIDS symptoms are caused by stress and harmful mental states. For example, Michael Ellner, the president of HEAL (Health Education AIDS Liaison), runs a “medical hypnosis” service and claims10 that it is the shock of an HIV diagnosis that kills people because such a diagnosis creates “very toxic emotional states,” which supposedly “knock out and undermine” the body’s natural defenses. Repairing the victim’s mental state is thus his solution to AIDS—a convenient prescription given Ellner’s line of work.

Roberto Giraldo, another member of HEAL who sits on the boards of organizations such as Rethinking AIDS and Alive and Well, describes himself as a “natural health counselor” and runs a clinic of “integral psycho immunology” in Brazil. Infamous for advising Mbeki’s health minister on nutritional alternatives to ART, Giraldo subsequently went on to promote organized AIDS denialism in Latin America.

Cultropreneurs, and indeed all alternative therapists, rely on anecdotal evidence and testimonies of people who were pleased with their treatments. The “living icon,” the person who through his or her very existence “proves” that HIV disease can be fought with alternative remedies, thus plays a crucial role in the cultropreneur’s success. The most important of these icons for the AIDS denialist movement was Christine Maggiore, who not only actively promoted the cause of AIDS denialism but tragically also put her own health and that of her family on the line.

In the preface to her widely distributed book, What if Everything You Thought You Knew about AIDS Was Wrong?, Maggiore says she lost faith in HIV science after a series of inconsistent HIV tests. This prompted her to conduct her own investigation “outside the confines of the AIDS establishment” and to start her own organization, Alive and Well, to “share vital facts about HIV and AIDS that are unavailable from mainstream venues.” Writing in 2000, she observed that her HIV status had been “decidedly positive” for five years, but that she was enjoying good health and was living “without pharmaceutical treatments or fear of AIDS.”11

The saga of Maggiore’s test results is a crucial foundational narrative for her as an AIDS denialist and features prominently in House of Numbers. Indeed a central AIDS denialist claim is that because different HIV tests can deliver different results, the entire edifice of AIDS science is flawed. Mag­goire’s test results are presented as a case in point.

The laboratory report shown in House of Numbers purporting to be Mag­giore’s first HIV test result is a positive Elisa test (for the presence of HIV antibodies) and a positive Western blot test (for HIV antigens) showing reactive bands for the p24 and gp120/160 antigens but not for p31. The absence of p31 suggests either a relatively new HIV infection or a 4.8 percent chance of a false positive test—thus the correct procedure in such a scenario is to counsel patients that the result is inconclusive and further testing is necessary.

Maggiore states that the second test came back “indisputably positive” and she was told that she had “five to seven” years to live and that her only treatment options were the eventual use of ART. Maggiore’s response was to find another doctor who “didn’t routinely fill people with toxic pharmaceuticals and lethal predictions” and to conduct further tests. These were apparently indeterminate, positive, negative, and positive. Evidence for the negative test result is unclear, however, as the clip shown in House of Numbers focuses on a fragment of the test result that shows nothing demonstrative of a negative result. But when the film shows the final test result, it is clear that all bands on the Western blot are positive for HIV antigens—an unequivocally positive result.

Maggiore concludes from her experience that HIV tests are “unreliable and inaccurate.” Yet the progression of her HIV tests from indeterminate to positive is consistent with her first test having been conducted soon after she became infected with HIV and sub­sequent tests being performed in line with clinical practice and culminating in an unambiguously positive test result.

Maggiore’s book, endorsed by Dues­berg, Rasnick, and Mullis, is a good illustration of AIDS denialist tactics. The first tactic is to deny the evidence. Thus, in her section on ART, Maggiore makes the baldly false statement that four years into the era of highly active antiretroviral treatment “there are still no reports in scientific journals that provide evidence for health improvement in patients taking these powerful drugs.” The second tactic is to dismiss the evidence that does not suit the case; for example, to reject studies showing that CD4 counts (an indicator of immune functioning) im­prove for people on ART because they are “surrogate markers” of the presence of HIV.

When she was pregnant in 2002 with her second child, Maggiore was featured on the cover of Mothering (a now-defunct pro-alternative healing and anti-vaccination magazine) with a red circle slash symbol over the letters “AZT” (an antiretroviral drug used to reduce the chances of transmitting HIV from mother to child) emblazoned across her abdo­men. After the baby, a daughter called Eliza Jane, was born, Maggiore in­creased the risk of transmitting HIV to the baby yet further by breastfeeding her. Tragically, Eliza Jane died at age three of what the Los Angeles coroner ruled to be AIDS-related pneumonia. Seven weeks earlier, Maggiore had stated on a radio show that her children had “excellent records of health,” yet the coroner reported that Eliza Jane was under-weight, under-height, and had pronounced atrophy of her thymus and other lymphatic organs. He found Pneumocystis jirovecii, a common AIDS-related opportunistic infection that is the leading cause of pediatric AIDS deaths, in the baby’s lungs and protein components of HIV (p24) in her brain.

Maggiore and her supporters, however, denied that HIV had anything to do with the death, relying instead on a rival report by Alive and Well advisory board member Mohammed Al Bayati, an animal toxicologist who is neither a medical doctor nor board-certified in human pathology and who consults on “health issues related to AIDS, adverse reactions to vaccines and medications” for $100 per hour.12 According to him, Eliza Jane died because of an allergic reaction to an antibiotic.

Maggiore also raised questions about the autopsy tests and dismissed the presence of p24 capsid protein in Eliza Jane’s brain (a clear indication of HIV infection) as being the result of a medical “scavenger hunt” designed to make an HIV diagnosis. Farber agreed, writing that the coroner had gone out of his way to make the death look like it was AIDS-related simply because she was Maggiore’s child. Farber attributed public anger against Maggiore for Eliza Jane’s death—manifested in angry emails, web postings, and even printed flyers—to “the impossibly censorious and even brutal treatment one can expect if one is branded an ‘AIDS denialist.’” She observed:

I started to see the story as one that was less and less medical, more and more psycho-social—a story of an almost crushing kind of mob rule, where the victims have no rights. Few could resist the delicious temptation to condemn a “denialist” mother, or to appropriate EJ as their own tragic little girl. It was all done in the pitch-perfect tones of the AIDS morality play some of us know so well.13

Farber’s argument is remarkable for its failure to consider that Eliza Jane was the victim in this instance, and that the “AIDS morality play” she sneers at is rooted in genuine social concern about the wellbeing of children. As Wain­berg put it, “Maggiore was so mis­guided in believing this concoction of bullshit, that it cost not only her life, which is her business, but also the life of her three-year old kid, and that is everybody’s business.”14

John Moore (a virologist) and I made a similar point, arguing in a New York Times op-ed (“Deadly Quackery,” June 4, 2006) that those who stand in positions of authority, be it president of a country (Mbeki) or a parent, should not indulge their own intellectual questionings and rejection of the scientific consensus when it is others who pay the price. This prompted a subsequent email exchange with Maggiore—later posted by Rethinking AIDS on the Internet15—which is illuminating for the way in which scientific evidence is immediately deflected by AIDS denialists with further questions as if the questions themselves are sufficient to dismiss the evidence. Maggiore questioned our conclusion (based on the coroner’s report) that Eliza Jane had died of AIDS and asked me to explain “how does Eliza Jane’s eight-year-old brother, raised in the same manner as his sister, test HIV negative?” She also disputed our observation that she was spreading “dangerous views” by claiming she was simply raising “unanswered questions” in the hope of being provided with “answers and references.”

I subsequently provided her with references showing high death rates among untreated HIV-infected children and pointing to the benefits of ART in extending life (and she predictably responded by raising problems with the design of the trials, including their reliance on “surrogate markers” and denying that there had been any scientific advance showing how HIV causes AIDS). When I argued that not all children born to HIV-positive mothers test negative, and hence that her son Charlie was one of the “lucky ones,” she responded by asking for a “more cogent explanation.”

I also expressed the wish that

When you reach the stage when HIV has undermined your immune system sufficiently to start causing you serious health problems, I sincerely hope that you start taking antiretroviral therapy. By all ac­counts, you are a good mother to Charlie, and it would be sad for him to lose you unnecessarily early. Three of the survey fieldworkers who work in my research centre started antiretroviral treatment in the past two years and they are all doing very well—and one of them even gave birth to a (HIV-negative) child. This is all great cause for celebration and hope in this horrible epidemic.

She responded by pointing out that she was in her fourteenth year of living with HIV “with no medications and no health problems” and asking rhetorically, “How long do you suppose I might expect to continue in this way?”

(Although Maggiore lived longer than average, she eventually progressed to AIDS and died three years later. Most people progress from HIV infection to AIDS within ten years, but 5 to 15 percent are able to fight off the infection for much longer—a feat scientists believe is genetic.) With regard to my fieldworkers, she said:

How do you measure “doing well”—clinical health, lab markers? I know a great number of HIV positive women who have given birth to HIV negative children without taking anti-HIV meds. The common factors among them are natural good health prior to testing positive, excellent nutrition, regular use of vitamin supplements, regular exercise, no use of AIDS meds, prescription drugs or street drugs, no smoking or drinking. Why are their experiences not “cause for celebration and hope” for a healthy, low cost alternative to toxic drugs whose long-term effects on mother or child remain unknown?

In other words, our exchange was clearly fruitless. It illustrates how people in denial can, as psychologist Seth Kalichman observes, construct a reality that is “impenetrable by facts.”16 When Eliza Jane died, Maggiore told re­porters: “I have been brought to my emotional knees, but not in regard to the science of this topic. . . . I am not second-guessing or questioning my understanding of the issue.” Maggiore remained in denial to the end, dying in 2009 at the age of fifty-two of bilateral bronchial pneumonia and disseminated herpes viral infection, each of which is a common AIDS-related opportunistic infection. That she was prepared to endanger her own life, and that of her family, speaks volumes about the passion and sincerity with which AIDS denialist beliefs can be embraced and to the powerful psychological forces at work within those beliefs.

A professional independent pathologist conducted an autopsy on Mag­giore, but the report was never released by the family. Instead, Al Bayati offered a predictable “interpretation” of it—namely that despite the presence of AIDS-defining conditions, Maggiore, like her daughter, had died of antibiotic poisoning. Clark Baker, a retired traffic cop and active AIDS denialist, came up with a variation on the typical AIDS conspiracy theory, stating that “it is clear that corrupt officials from within the LA County Department of Health have pressured officials into making false claims that Maggiore and her daughter died of HIV so that pharmaceutical marketers could induce useful media idiots to perpetuate the myth on their behalf.”17

The death of this important living icon was obviously a hard blow for organized AIDS denialism. Maggiore’s organization Alive and Well posted a memorial notice when she died, but visitors to the website today are still greeted with a “message” from Christine Maggiore on the “about us” page that gives no indication that she is dead.18 Anti-AIDS denialist sites respond to such attempts to obscure and downplay the deaths of living icons by publicizing them—see for example www.aidstruth.org/denialism/dead_denialists. Other at­tempts have been made to create new “living icons”—for example, the people profiled on a website called We Are Living Proof19—but none of them comes close to being able to replace Mag­giore’s symbolic and organizational power.

The symbolic importance of Mag­giore—and now of her death—is illustrated in this posting by a one-time AIDS denialist. He talks about how his “dissident” beliefs encouraged him to ignore his positive HIV test result, but that when he heard that Maggiore had died, alarm bells started ringing for him for the first time:

In 2008 I had bumped into the website aidstruth.org and, while reading it in a “yeah blah blah whatever” kind of attitude, I saw the “denialists who have died” and “who the denialists are” sections. Something clicked. And very soon after I paid one of my usual visits to the Alive and Well site and found the memorial text about Maggiore’s death. It didn’t mention the cause (of course) so I Googled away thinking “please, let it be a traffic accident or something,” and bam! Pneumonia. . . .

You know how denialists usually say it’s just a coincidence, like “why not? Anybody can have pneumonia,” but having recently read the list of dead denialists and wondering if those weren’t too many untimely coincidences, for me Maggiore’s death is where I drew the line. For me it was the “one too many” coincidence. That’s where I secretly started to wonder if I had been wrong.20

Medical science is more trustworthy than alternative medicine precisely because the former is built on randomized controlled trials, whereas the latter rests on anecdotes and individual testimonies. It is thus somewhat ironic that a single death—Maggiore’s—has possibly done more than scientific rebuttals to fight AIDS denialism. Precisely because this death was that of a living icon who rejected HIV science in favor of alternative therapies, it carried disproportionate weight for those tempted by AIDS denialism. It illustrates how the battle for science and reason is not always just about “the facts,” as some facts are symbolically more important than others.


Notes

1. For a recent readable summary of the evidence, see Volberding, P., and S. Deeks. 2010. “Antiretroviral Therapy and Management of HIV Infection.” The Lancet 376: 49–62.

2. Nattrass, N. 2008. “AIDS and the Scientific Governance of Medicine in Post-Apartheid South Africa.” African Affairs 107 (427): 157–76.

Chigwedere, P., G. Seage, S. Gruskin, T. Lee, M. Essex. 2008. “Estimating the Lost Benefits of Antiretroviral Drug Use in South Africa.” Journal of Acquired Immune Deficiency Syndrome 49: 410–15.

3. Nattrass, N. 2007. “AIDS Denialism versus Science.” Skeptical Inquirer 31 (September/October): 31–37.

4. http://www.info.gov.za/otherdocs/2001/aidspanelpdf.pdf

5. Nattrass, N. 2012. The AIDS Conspiracy: Science Fights Back (Columbia University Press, New York). Additional references and citations for this article can be found here.

6. www.whale.to/a/wainberg_h.html.

7. Farber. C. 2006. “Out of Control: AIDS and the Corruption of Medical Science.” Harper’s Magazine March: 37–52.

8. Farber, C. 1999. “Ignoring the Flames.” Impres­sion August. Available at www.virusmyth.com/aids/hiv/cfflames.htm.

9. http://www4.dr-rath-foundation.org/THE_FOUNDATION/the_truth_about_arvs/index.html.

10. www.ellner.info.

11. Maggiore, Christine. 2000. What If Everything You Thought You Knew about AIDS Was Wrong?, fourth edition revised. American Foundation for AIDS Alternatives, Studio City, CA.

12. http://www.toxi-health.com/consult.html.

13. Farber, C. 2006. “A Daughter’s death, a Mother’s survival.” LA City Beat (June 8). Available at http://justiceforej.com/Farber-CityBeat-EJ.pdf.

14. quoted in Law, S. 2009. “In Denial.” McGill Daily (November 16). Available at http://www.mcgilldaily.com/2009/11/in_denial/.

15. http://www.rethinkingaids.com/challenges/moore-maggiore-scovill.html.

16. Interview with Seth Kalichman: http://www.thebody.com/content/art52090.html.

17. http://www.pinknews.co.uk/?comments_popup=14994.

18. http://www.aliveandwell.org/html/top_bar_pages/aboutus.html.

19. http://wearelivingproof.org/.

20. http://denyingaids.blogspot.com/2010/07/how-aids-denialism-can-kill-you-part.html

Nicoli Nattrass

Nicoli Nattrass's photo

Nicoli Nattrass is director of the AIDS and Society Research Unit at the University of Cape Town and visiting professor at Yale University. Her earlier research helped change South African AIDS policy and her new book, The AIDS Conspiracy: Science Fights Back (Columbia University Press, 2012), considers the link between AIDS denialism, conspiracy theory, and the rejection of evidence-based medicine.