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The Social and Symbolic Power of AIDS

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.

NICOLI NATTRASS

he discovery of antiretroviral therapy (ART) trans- a recent “documentary” funded in part by Rethinking AIDS. formed HIV infection from a death sentence into a Duesberg does more than merely 1 Tmanageable chronic disease. Yet a small group of question or rethink HIV science: he ac- “AIDS denialists” rejects the science underlying ART, be- tively publicizes his unfounded claims. Mark Wainberg, a microbiologist and lieving it rests on rotten foundations and that the therapy is past president of the Inter national toxic. These ideas have had deadly consequences. Most in- AIDS Society, called him “probably the famously, South African president Mbeki set up a panel of closest thing we have in this world to a scientific psychopath.”6 Duesberg’s sup- AIDS denialists and HIV scientists to debate the issue while porters, however, interpret such criti- delaying the use of ART in the public sector. Over 330,000 cism as evidence of his unfair oppres- South Africans died unnecessarily as a result.2 sion by a corrupt “AIDS establishment.” Accord ing to Celia Far ber, Duesberg’s In an earlier article3 for the SKEPTICAL powerful community-building effects. leading praise-singer, “As AIDS grew in INQUIRER I described the different vari- AIDS denialism gains social traction the 1980s into a global, multibillion- eties of AIDS denialism, highlighting the through four symbolically and organiza- dollar juggernaut of diagnostics, drugs, views of Berkeley virologist Peter Dues- tionally important roles: the “hero scien- and activist organizations, whose sole berg, who believes—despite never having tists” (notably Duesberg) who provide a target in the fight against AIDS was done any clinical research on HIV—that patina of scientific legitimacy for the HIV, condemning Duesberg became it is a harmless “passenger virus” and that movement; the “cultropreneurs” who part of the moral crusade.”7 AIDS is caused by recreational drugs, offer fake cures in the place of ART; the David Rasnick, who writes with malnutrition, and even antiretroviral HIV-positive “living icons” who seem to Duesberg, is also a hero scientist of therapy itself. He and the other AIDS provide proof of concept by appearing to sorts. He assisted the Rath Health denialists on Mbeki’s panel recom- live healthily without ART; and the Foundation with its illegal South mended that HIV testing be halted and “praise singers,” sympathetic journalists African trial (which resulted in several that immune deficiency be treated and filmmakers who publicize the move- unnecessary deaths) in which AIDS pa- through “massage therapy, music therapy, ment. tients were taken off antiretroviral ther- yoga, spiritual care, , Indian Figure 1 shows the organizational apy and put onto high-dose vitamin Ayurvedic medicine, light therapy and connections between the key AIDS de- products in stead. The Alive and Well many other methods.”4 nialists. Duesberg is particularly in - website claims he is the creator of pro- This article draws on my recent work fluential. He sits on the boards of Re- tease inhibitors, but his name does not revisiting the problem of AIDS denial- thinking AIDS (an organization that ap pear on any of the relevant patents. ism, this time focusing on its organized promotes his views about HIV) and More important is , an ec- character.5 I argue that the symbiotic Alive and Well (founded by HIV-posi- centric chemist who won the Nobel connection between AIDS denialism tive “living icon” Christine Mag giore to Prize for inventing the polymerase and alternative healing modalities is fa- promote alternative therapies). He also chain reaction. Mullis, who openly dis- cilitated by a shared conspiratorial stance served on Mbeki’s Panel and received cusses his experimentation with hallu- toward HIV science, which has had extensive coverage in House of Numbers, cinatory drugs and alleged encounters

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with extraterrestrials, has never worked new medical protocols and alternative A common notion promoted by cul- on HIV; however, precisely because he therapies, many of which are AIDS re- tropreneurs is that AIDS symptoms are won a Nobel Prize, he is a symbolically lated.” caused by stress and harmful mental important hero scientist. The link between AIDS denialism states. For example, Michael Ellner, the Robert Leppo, a venture capitalist and is embodied by president of HEAL (Health Education who sits on the board of Rethinking what I term “cultropreneurs.” Cul tro - AIDS Liaison), runs a “medical hypno- AIDS, funds Duesberg’s laboratory as preneurs use AIDS denialism and re- sis” service and claims10 that it is the well as Rethinking AIDS. Farber de- lated conspiracy theories to undermine shock of an HIV diagnosis that kills scribes Leppo as the “reluctant hero of the credibility of antiretroviral ther- people because such a diagnosis creates the underground” who “saved Dues berg apy—a convenient marketing device for “very toxic emotional states,” which from utter dissolution” after his federal their alternative therapies. For example, supposedly “knock out and undermine” funding was supposedly cut off “as pun- the Rath Health Founda tion describes the body’s natural defenses. Repairing ishment for advancing a scientific hy- antiretroviral therapy as a form of geno- the victim’s mental state is thus his so- pothesis that differed from that of the cide inflicted on society by the “pharma- lution to AIDS—a convenient prescrip- 8 9 establishment.” Leppo was also the ex- ceutical drug cartel.” , who tion given Ellner’s line of work. ecutive producer of an AIDS denialist sells a variety of books and alternative Roberto Giraldo, another member of film, The Other Side of AIDS, the pro- healing products, makes similar con- HEAL who sits on the boards of organ- motional material of which describes spiratorial suggestions and often fea- izations such as Rethinking AIDS and him as “deeply involved in researching tures AIDS denialists on his radio show. 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 alterna- On Mbeki’s Panel tives to ART, Giraldo subsequently went Board of Rethinking AIDS on to promote organized AIDS denial- ism in Latin America.

Robert Leppo Cultropreneurs, and indeed all alter- David Crowe native therapists, rely on anecdotal evi- Andrew Herxheimer Gordon Stewart Christian Fiala Manu Kothari dence and testimonies of people who Claus Koehnlein Sam Mhlongu* were pleased with their treatments. The (deceased) David Rasnick* “living icon,” the person who through Etienne de Harven his or her very existence “proves” that Charles Gesheckter HIV disease can be fought with alterna- Roberto Giraldo tive remedies, thus plays a crucial role in the cultropreneur’s success. The most Celia Farber important of these icons for the AIDS Liam Schef Harvey Bialy denialist movement was Christine Mag- Brent Leung Eleni Papadopulos-Eleopulos giore, who not only actively promoted Christine Maggiore Valender Turner, the cause of AIDS denialism but tragi- (deceased) Kary Mullis# Neville Hodgkinson cally also put her own health and that of her family on the line. Mohammed Al Bayati, In the preface to her widely distrib- Juan Jose Flores uted book, What if Everything You Thought You Knew about AIDS Was Featured in House of Numbers Wrong?, Maggiore says she lost faith in Board of Alive and Well HIV science after a series of inconsistent HIV tests. This prompted her to con- duct her own investigation “outside the confines of the AIDS establishment” Figure 1. AIDS denialist networks. Names marked by an asterisk (*) are also linked to Mattias and to start her own organization, Alive Rath (The Rath Health Foundation); name marked with a pound sign (#) was invited onto and Well, to “share vital facts about HIV Mbecki's panel but did not attend; names in italics are journalists/filmmakers. and AIDS that are unavailable from

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mainstream venues.” Writing in 2000, predictions” and to conduct further tests. prove for people on ART because they she observed that her HIV status had These were apparently indeterminate, are “surrogate markers” of the presence been “decidedly positive” for five years, positive, negative, and positive. Evidence of HIV. but that she was enjoying good health for the negative test result is unclear, When she was pregnant in 2002 with and was living “without pharmaceutical however, as the clip shown in House of her second child, Maggiore was featured treatments or fear of AIDS.”11 Numbers focuses on a fragment of the on the cover of Mothering (a now-de- The saga of Maggiore’s test results is test result that shows nothing demon- funct pro-alternative healing and anti- a crucial foundational narrative for her as strative of a negative result. But when vaccination magazine) with a red circle an AIDS denialist and features promi- the film shows the final test result, it is slash symbol over the letters “AZT” (an nently in House of Numbers. Indeed a cen- clear that all bands on the Western blot antiretroviral drug used to reduce the tral AIDS denialist claim is that because are positive for HIV antigens—an un- chances of transmitting HIV from different HIV tests can deliver different equivocally positive result. mother to child) emblazoned across her results, the entire edifice of AIDS science Maggiore concludes from her expe- abdo men. After the baby, a daughter is flawed. Mag goire’s test results are pre- rience that HIV tests are “unreliable and called Eliza Jane, was born, Maggiore sented as a case in point. inaccurate.” Yet the progression of her in creased the risk of transmitting HIV The laboratory report shown in HIV tests from indeterminate to posi- to the baby yet further by her. Tragically, Eliza Jane died at age three of what the coroner ruled to be AIDS-related . Seven weeks earlier, Maggiore had stated on a radio show that her children had “excellent records of health,” yet the After her daughter Eliza Jane was born, AIDS denier coroner reported that Eliza Jane was Maggiore in creased the risk of transmitting HIV to the under-weight, under-height, and had baby yet further by breastfeeding her. Tragically, Eliza pronounced atrophy of her thymus and other lymphatic organs. He found Pneu- Jane died at age three of what the Los Angeles coroner mocystis jirovecii, a common AIDS-re- ruled to be AIDS-related pneumonia. lated opportunistic infection that is the leading cause of pediatric AIDS deaths, in the baby’s lungs and protein compo- nents of HIV (p24) in her brain. Maggiore and her supporters, how- ever, denied that HIV had anything to do with the death, relying instead on a House of Numbers purporting to be tive is consistent with her first test hav- rival report by Alive and Well advisory Mag giore’s first HIV test result is a pos- ing been conducted soon after she be- board member Mohammed Al Bayati, itive Elisa test (for the presence of HIV came infected with HIV and sub sequent an animal toxicologist who is neither a antibodies) and a positive Western blot tests being performed in line with clin- medical doctor nor board-certified in test (for HIV antigens) showing reactive ical practice and culminating in an un- human pathology and who consults on bands for the p24 and gp120/160 anti- ambiguously positive test result. “health issues related to AIDS, adverse gens but not for p31. The absence of Maggiore’s book, endorsed by Dues - reactions to vaccines and medications” p31 suggests either a relatively new berg, Rasnick, and Mullis, is a good il- for $100 per hour.12 According to him, HIV infection or a 4.8 percent chance lustration of AIDS denialist tactics. The Eliza Jane died because of an allergic of a false positive test—thus the correct first tactic is to deny the evidence. Thus, reaction to an antibiotic. procedure in such a scenario is to coun- in her section on ART, Maggiore makes Maggiore also raised questions about sel patients that the result is inconclu- the baldly false statement that four years the autopsy tests and dismissed the sive and further testing is necessary. into the era of highly active antiretroviral presence of p24 capsid protein in Eliza Maggiore states that the second test treatment “there are still no reports in Jane’s brain (a clear indication of HIV came back “indisputably positive” and scientific journals that provide evidence infection) as being the result of a med- she was told that she had “five to seven” for health improvement in patients tak- ical “scavenger hunt” designed to make years to live and that her only treatment ing these powerful drugs.” The second an HIV diagnosis. Farber agreed, writ- options were the eventual use of ART. tactic is to dismiss the evidence that does ing that the coroner had gone out of his Maggiore’s response was to find another not suit the case; for example, to reject way to make the death look like it was doctor who “didn’t routinely fill people studies showing that CD4 counts (an AIDS-related simply because she was with toxic pharmaceuticals and lethal indicator of immune functioning) im- Maggiore’s child. Farber attributed pub-

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lic anger against Maggiore for Eliza spreading “dangerous views” by claim- negative children without taking Jane’s death—manifested in angry ing she was simply raising “unanswered anti-HIV meds. The common fac- tors among them are natural good emails, web postings, and even printed questions” in the hope of being pro- health prior to testing positive, excel- flyers—to “the impossibly censorious vided with “answers and references.” lent nutrition, regular use of vitamin and even brutal treatment one can ex- I subsequently provided her with supplements, regular exercise, no use pect if one is branded an ‘AIDS denial- references showing high death rates of AIDS meds, prescription drugs or ist.’” She observed: among untreated HIV-infected chil- street drugs, no smoking or drinking. dren and pointing to the benefits of Why are their experiences not “cause I started to see the story as one that for celebration and hope” for a was less and less medical, more and ART in extending life (and she pre- healthy, low cost alternative to toxic more psycho-social—a story of an al- dictably responded by raising problems drugs whose long-term effects on most crushing kind of mob rule, with the design of the trials, including mother or child remain unknown? where the victims have no rights. Few their reliance on “surrogate markers” In other words, our exchange was could resist the delicious temptation and denying that there had been any to condemn a “denialist” mother, or to clearly fruitless. It illustrates how peo- appropriate EJ as their own tragic lit- scientific advance showing how HIV causes AIDS). When I argued that not ple in denial can, as psychologist Seth tle girl. It was all done in the pitch- Kalichman observes, construct a reality perfect tones of the AIDS morality all children born to HIV-positive 16 play some of us know so well.13 mothers test negative, and hence that that is “impenetrable by facts.” When her son Charlie was one of the “lucky Eliza Jane died, Maggiore told re - Farber’s argument is remarkable for ones,” she responded by asking for a porters: “I have been brought to my its failure to consider that Eliza Jane “more cogent explanation.” emotional knees, but not in regard to was the victim in this instance, and that I also expressed the wish that the science of this topic.... I am not the “AIDS morality play” she sneers at second-guessing or questioning my un- is rooted in genuine social concern When you reach the stage when derstanding of the issue.” Maggiore re- about the wellbeing of children. As HIV has undermined your immune system sufficiently to start causing mained in denial to the end, dying in Wain berg put it, “Maggiore was so mis- you serious health problems, I sin- 2009 at the age of fifty-two of bilateral guided in believing this concoction of cerely hope that you start taking an- bronchial pneumonia and disseminated bullshit, that it cost not only her life, tiretroviral therapy. By all ac counts, herpes viral infection, each of which is which is her business, but also the life you are a good mother to Charlie, a common AIDS-related opportunistic and it would be sad for him to lose of her three-year old kid, and that is infection. That she was prepared to en- 14 you unnecessarily early. Three of the everybody’s business.” survey fieldworkers who work in my danger her own life, and that of her John Moore (a virologist) and I research centre started antiretroviral family, speaks volumes about the pas- made a similar point, arguing in a New treatment in the past two years and sion and sincerity with which AIDS York Times op-ed (“Deadly ,” they are all doing very well—and one of them even gave birth to a (HIV- denialist beliefs can be embraced and to June 4, 2006) that those who stand in negative) child. This is all great cause the powerful psychological forces at positions of authority, be it president of for celebration and hope in this hor- work within those beliefs. a country (Mbeki) or a parent, should rible epidemic. A professional independent pathol- not indulge their own intellectual ques- She responded by pointing out that ogist conducted an autopsy on Mag - tionings and rejection of the scientific she was in her fourteenth year of living giore, but the report was never released consensus when it is others who pay the with HIV “with no medications and no by the family. Instead, Al Bayati offered price. This prompted a subsequent health problems” and asking rhetori- a predictable “interpretation” of it— email exchange with Maggiore—later cally, “How long do you suppose I namely that despite the presence of posted by Rethinking AIDS on the In- AIDS-defining conditions, Maggiore, 15 might expect to continue in this way?” ternet —which is illuminating for the (Although Maggiore lived longer like her daughter, had died of antibiotic way in which scientific evidence is im- than average, she eventually progressed poisoning. Clark Baker, a retired traffic mediately deflected by AIDS denialists to AIDS and died three years later. cop and active AIDS denialist, came up with further questions as if the ques- Most people progress from HIV infec- with a variation on the typical AIDS tions themselves are sufficient to dis- tion to AIDS within ten years, but 5 to conspiracy theory, stating that “it is miss the evidence. Maggiore ques- 15 percent are able to fight off the in- clear that corrupt officials from within tioned our conclusion (based on the fection for much longer—a feat scien- the LA County Department of Health coroner’s report) that Eliza Jane had tists believe is genetic.) With regard to have pressured officials into making died of AIDS and asked me to explain my fieldworkers, she said: false claims that Maggiore and her “how does Eliza Jane’s eight-year-old daughter died of HIV so that pharma- How do you measure “doing well”— brother, raised in the same manner as clinical health, lab markers? I know a ceutical marketers could induce useful his sister, test HIV negative?” She also great number of HIV positive media idiots to perpetuate the myth on disputed our observation that she was women who have given birth to HIV their behalf.”17

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The death of this important living and found the memorial text about HIV Infection.” The Lancet 376: 49–62. icon was obviously a hard blow for or- Maggiore’s death. It didn’t mention 2. Nattrass, N. 2008. “AIDS and the Scientific the cause (of course) so I Googled Governance of Medicine in Post-Apartheid ganized AIDS denialism. Maggiore’s or- away thinking “please, let it be a traf- South Africa.” African Affairs 107 (427): 157–76. ganization Alive and Well posted a me- fic accident or something,” and bam! Chigwedere, P., G. Seage, S. Gruskin, T. Lee, morial notice when she died, but visitors Pneumonia.... M. Essex. 2008. “Estimating the Lost Benefits of You know how denialists usually Antiretroviral Drug Use in South Africa.” Journal to the website today are still greeted with of Acquired Immune Deficiency Syndrome 49: 410– say it’s just a coincidence, like “why a “message” from Christine Maggiore on 15. not? Anybody can have pneumonia,” 3. Nattrass, N. 2007. “AIDS Denialism versus the “about us” page that gives no indica- but having recently read the list of Science.” SKEPTICAL INQUIRER 31 (September/ 18 tion that she is dead. Anti-AIDS de- dead denialists and wondering if October): 31–37. nialist sites respond to such attempts to those weren’t too many untimely co- 4. http://www.info.gov.za/otherdocs/2001/ incidences, for me Maggiore’s death aidspanelpdf.pdf obscure and downplay the deaths of liv- is where I drew the line. For me it 5. Nattrass, N. 2012. The AIDS Conspiracy: ing icons by publicizing them—see for was the “one too many” coincidence. Science Fights Back ( Press, example www.aidstruth.org/denialism/ That’s where I secretly started to New York). Additional references and citations wonder if I had been wrong.20 for this article can be found here. dead_denialists. Other at tempts have 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.” Impres sion August. Available at www.virusmyth .com/aids/hiv/cfflames.htm. 9. http://www4.dr-rath-foundation.org/ That [Maggiore] was prepared to endanger her own life, THE_FOUNDATION/the_truth_about_arvs/ index.html. and that of her family, speaks volumes about the 10. www.ellner.info. 11. Maggiore, Christine. 2000. What If Every- passion and sincerity with which AIDS denialist beliefs thing You Thought You Knew about AIDS Was can be embraced and to the powerful psychological Wrong?, fourth edition revised. American Foun- dation for AIDS Alternatives, Studio City, CA. forces at work within those beliefs. 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). Avail- able 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. been made to create new “living icons”— Medical science is more trustworthy 16. Interview with : http:// for example, the people profiled on a than alternative medicine precisely be- www.thebody.com/content/art52090.html. 19 cause the former is built on randomized 17. http://www.pinknews.co.uk/?comments_ website called We Are Living Proof — popup=14994. but none of them comes close to being controlled trials, whereas the latter rests 18. http://www.aliveandwell.org/html/top_ able to replace Mag giore’s symbolic and on anecdotes and individual testi- bar_pages/aboutus.html. monies. It is thus somewhat ironic that 19. http://wearelivingproof.org/. organizational power. 20. http://denyingaids.blogspot.com/2010/07/ The symbolic importance of Mag- a single death—Maggiore’s—has pos- how-aids-denialism-can-kill-you-part.html giore—and now of her death—is illus- sibly done more than scientific rebuttals trated in this posting by a one-time to fight AIDS denialism. Precisely be- AIDS denialist. He talks about how his cause this death was that of a living icon who rejected HIV science in favor “dissident” beliefs encouraged him to Nicoli Nattrass is director of of alternative therapies, it carried dis- ignore his positive HIV test result, but the AIDS and Society Re- that when he heard that Maggiore had proportionate weight for those tempted search Unit at the University died, alarm bells started ringing for him by AIDS denialism. It illustrates how of Cape Town and visiting for the first time: the battle for science and reason is not professor at Yale University. always just about “the facts,” as some In 2008 I had bumped into the web- Her earlier research helped facts are symbolically more important change South African AIDS site aidstruth.org and, while reading n it in a “yeah blah blah whatever” kind than others. policy and her new book, The AIDS Conspiracy: of attitude, I saw the “denialists who Notes Science Fights Back (Columbia University have died” and “who the denialists Press, 2012), considers the link between AIDS are” sections. Something clicked. 1. For a recent readable summary of the evi- denialism, conspiracy theory, and the rejection And very soon after I paid one of my dence, see Volberding, P., and S. Deeks. 2010. of evidence-based medicine. usual visits to the Alive and Well site “Antiretroviral Therapy and Management of

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