AIDS denial: A lethal delusion

ON 27 December 2008, a well-heeled 52-year-old woman died in a Los Angeles hospital. Her death certificate describes a body riddled with opportunistic infections typical of the late stages of AIDS. Christine Maggiore had tested HIV positive 16 years earlier, but she had shunned ART, the antiretroviral therapy that stops HIV replicating and prevents AIDS.

This was not the first time a death in Maggiore's family had made headlines: five years earlier her 3-year-old daughter Eliza Jane had died. The autopsy described a chronically ill little girl who was underweight, under-height, and had encephalitis and pneumonia - all AIDS-related. When pregnant, Maggiore had again rejected ART and she had breastfed Eliza Jane, another way of transmitting the virus.

Why, in 21st-century California, would a middle-class woman and her young daughter die like this when there is tried-and-tested treatment for their illness? The answer lies in a bizarre medical conspiracy theory that says AIDS is not caused by HIV infection (see Five myths about HIV and AIDS).
[UPDATE: further discussion of the New Scientist artcle is posted at GayNZ.com]
It is tempting to dismiss the so-called AIDS denialism movement out of hand, but it has a strong internet presence, with a plethora of websites and blogs that can mislead the unwary. While the movement has lately suffered some significant blows to its credibility, it has in the recent past wielded extraordinary influence, especially in southern Africa, the centre of the world's AIDS epidemic. "Denialism has been relegated to the fringes of the internet, but it isn't of no consequence," says John Moore, an immunologist at Weill Cornell Medical College, Ithaca, New York, and one of the world's foremost AIDS researchers. "It can still cost the lives of unsuspecting people."

The origins of the AIDS denialism movement can be traced back to 1987, four years after the discovery of HIV. Peter Duesberg was then a renowned researcher at the University of California, Berkeley, who had shown that some cancers were triggered by retroviruses. In March that year, Duesberg performed an about-face, publishing an article in which he questioned his original finding that retroviruses caused cancer, and also whether HIV (another retrovirus, although not one that he had studied) caused AIDS.

At the time, HIV science was in its infancy, and Duesberg was not the only mainstream scientist to speculate whether AIDS was actually caused by lifestyle factors such as taking drugs, for example. Indeed, New Scientist published Duesberg's manifesto of dissent in 1988.

"Duesberg did get laypeople's attention, and they, in turn, got him scientific attention," says University of California sociologist, Steven Epstein, author of Impure Science, a book on AIDS research. "Credibility was cycled back and forth."

As the clinical and epidemiological evidence linking HIV with AIDS accrued, however, support for denialism among mainstream scientists fell away. In the mid-1990s came the clincher. Cocktails of ART were found to halt the replication of HIV and reverse and prevent the development of AIDS. By the end of 1996, doctors in the west were witnessing the "Lazarus effect": AIDS patients who had been mortally ill were rising from their beds, putting on jackets and ties, and reporting for work.

By rights the denialism movement should have died out there and then. Yet it persisted. Not one of the denialists was a researcher studying AIDS or HIV - they simply critiqued the work of those who did. Much of the movement's output has been journalistic rather than scientific, spawning numerous articles, books, films (often self-published or self-produced), and lately websites. Tellingly, most of the studies they cite are quite old, reflecting the fact that mainstream support has long since died out.

Ask what the denialists do believe, however, and there is no consensus (see Five myths about HIV and AIDS). Some hark back to the early idea that AIDS in gay men is caused by amyl nitrite use; others say the cause is ART itself - although no one can explain why AIDS arose before ART was developed.

Some denialists accept that HIV may be present in those with AIDS, but claim it is just another opportunistic infection, rather than the cause. Others say, incredibly, that HIV has never been proven to exist at all.

Perhaps the most staggering of their beliefs, though, is that everyone else has got it so wrong. Denialists claim the scientific community cannot afford to admit their error because too many reputations and too many research grants are now at stake. Once ART was developed, the multibillion-dollar drugs industry had a vast investment at stake too.

It is certainly true that the scientific peer-review process can slow down the acceptance of new theories. And pharmaceutical companies hardly have a spotless record either. Yet the clinical and epidemiological evidence for the viral cause of AIDS is overwhelming, from virologists who see HIV under their microscopes, to doctors the world over who witness AIDS patients begin ART and make dramatic recoveries.

Denialism in the west continued to limp along, attracting a following of conspiracy theorists, attention seekers, peddlers of pseudoscience and HIV patients in denial. The movement's leaders vary in their credibility. Duesberg's most vocal supporter is David Rasnick, a former biochemist who makes much of his research background, as he once studied a group of enzymes called proteases. HIV possesses a protease enzyme, and protease inhibitors represent a key class of ART drugs. However Rasnick only worked on rat proteases, never on HIV's.

Then there is Henry Bauer, a retired chemistry and life sciences professor at Virginia State University in Petersburg, who edits the Journal of Scientific Exploration. This publishes research on such topics as alien abductions and telepathy. Before dabbling in virology, Bauer was a leading authority on the existence of the Loch Ness monster.

Leading AIDS denialist Henry Bauer is a former expert on the Loch Ness monster

Racism

The effects of AIDS denialism in Africa are no joke, however. In 2000, as the movement was rapidly losing all credibility, South African president Thabo Mbeki asked some of the leading denialists to sit on an advisory council to guide his response to the epidemic. On their advice he did everything in his power to resist ART use in his country.

Mbeki felt the mainstream western view that AIDS was caused by a sexually transmitted infection reflected racist beliefs that Africans were promiscuous. Western science, Mbeki believed, was blind to an obvious cause of immune deficiency in Africa: poverty.

It wouldn't be the first time. A century ago TB became endemic among black, but not white, South Africans, leaving western scientists flummoxed. Some pondered a genetic explanation, while overlooking the obvious - in white-ruled cities black people lived in the crowded conditions that encourage the spread of TB. In other words, blacks were falling ill as a result of white domination. Mbeki argued that the same thing was happening again. AIDS was simply a name for the diseases of poverty that had been legion in Africa since the days of colonial rule.

Mbeki was forced out last year - although not because of his denialism - and South Africa's new president, Jacob Zuma, supports ART. But immense damage has already been done. Last year, a study found that if Mbeki's government had provided HIV treatment, there would have been 365,000 fewer premature deaths in South Africa (Journal of Acquired Immune Deficiency Syndromes, vol 49, p 410). The legacy of Mbeki's denialism might still have an influence on the treatment decisions of many HIV-positive South Africans.

In Australia there is now the "Perth Group", led by Eleni Papadopulos-Eleopulos, whose science qualification is an undergraduate degree in nuclear physics. She appeared as an expert witness in 2006 for an Australian man appealing his conviction for failing to tell his sexual partners he was HIV-positive. Papadopulos-Eleopulos stood up in court and claimed that HIV does not exist. The man lost his case, however, with the judge noting that Papadopulos-Eleopulos had "no formal qualifications in medicine, virology, immunology, or any other medical disciplines... Her opinions lack any credibility."

Along with Christine Maggiore's death, you might think that these events would significantly weaken the denialists' case. Yet it would be premature to predict the movement's demise.

Consider that in the US, two small surveys have shown startlingly high numbers of people - around 1 in 4 - who question whether HIV causes AIDS. This probably reflects lack of education about the virus, rather than active denialism, since there is no evidence that people are seeking alternative AIDS treatment in large numbers. It does suggest, however, a troubling lack of communication between mainstream medicine and ordinary people. It is precisely such gaps in communication that internet quacks and conspiracy theorists can exploit.

Gaps in communication between mainstream medicine and ordinary people can be exploited by internet quacks and conspiracy theorists

Seth Kalichman, a psychologist at the University of Connecticut in Storrs, who carried out one of the surveys, has recently published Denying AIDS, a book about the movement. "My perception is that there is certainly a lot more mischief, like books and documentaries shown at film festivals," he says.

For some, no amount of evidence will overturn their entrenched beliefs. Maggiore blamed her daughter's death on an allergic reaction to antibiotics. For a long time she publicly cited her own good health as proof that HIV does not cause AIDS.

It is unpleasant to imagine what went through her mind last year as her own health worsened. She apparently continued to refuse the potentially lifesaving ART. Perhaps that is no surprise. To accept the drugs she had denied Eliza Jane would have been tantamount to accepting responsibility for her daughter's death.

To accept the drugs she had denied Eliza Jane would have meant taking responsibility for her child's death. And that's something that anyone would want to stay in denial about.

Note New Scientist article by Jonny Steinberg is the author of Three Letter Plague: A young man's journey through a great epidemic (Vintage), published in the US as Sizwe's Test

My year as an AIDS denialist

"For a year I had two lives," says Seth Kalichman, a psychologist at the University of Connecticut in Storrs and editor of the journal AIDS and Behavior. "It was pretty disturbing."

Kalichman was researching his book, Denying AIDS, which was published in the US earlier this year. The book charts the development of AIDS denialism into its current incarnation as a ragbag of eccentric scientists, crusading conspiracy theorists and HIV patients in denial.

Kalichman wanted to get close to the denialists - and that meant becoming one of them. "I knew that they would never talk to me as Seth Kalichman, the AIDS scientist," he says. So Kalichman became public health student "Joe" (a nickname he sometimes uses).

The denialist movement has a strong internet presence. As Joe, Kalichman started posting on websites and blogs. "I would pose questions, and they indoctrinated me into denialism," he recalls. "There were times when I felt I was being groomed."

His next step was to get Joe on an internet list of "AIDS dissidents". Denialists often cite this document, which currently has 2651 international signatories, as a list of scientists who dispute that HIV causes AIDS. In fact, only some of those listed are scientists, and even fewer are biologists - although alternative therapists often crop up.

As a budding denialist who was part of the medical establishment, Joe would no doubt have been seen as a great catch. Once he passed a brief email cross-examination, his name went up.

"That list is a roster of who can be trusted," Kalichman discovered. Joe now gained access to, and regularly chatted with, other prominent denialists, including the Canadian journalist David Crowe.

Kalichman began to find his double life surreal. "I was going to meetings at the National Institutes of Health during the day and in the evenings blogging with David Crowe," he recalls. But Kalichman wanted to meet denialists face to face. He heard that the movement's founder and star scientist Peter Duesberg was holding an invitation-only cancer conference.

SUSPICIOUS

Duesberg was once widely renowned for his discovery of the first cancer gene, but he is now derided for his eccentric views on HIV. He works in a small, privately funded laboratory where he researches his outlandish theories of cancer.

Joe's status as an AIDS dissident won him an invite. He felt nervous his subterfuge would be discovered, either by inadvertently using his real name or through his appearance. "I had been telling them I was a student, and I'm 48 years old," he says.

Still, Kalichman got through the door and talked to other attendees, including Duesberg's right-hand man David Rasnick. Rasnick seemed suspicious but did not get him thrown out.

Finally, Kalichman met Duesberg himself, and it made him revise some of his opinions about the man. Kalichman had previously wondered if Duesberg's stated views could be genuine. "He looked me dead in the eyes and said this is not an infectious disease," he says. "I have no question that he really believes this. He ignores the science to retain this belief."

Why? In Kalichman's opinion: "In that very small circle of AIDS denialism, he's a rock star. He was the focus of attention the whole time and he was very comfortable with that."

After the conference Kalichman abandoned his double life. He has no doubt that his time spent as Joe gave him unique insight into the denialists' world. "For Peter Duesberg, he's the big fish in the small pond. For people with HIV, denialism protects them from having to face that fact. Our beliefs are a substantial part of our psychological survival."

Note: Interview in New Scientist by Clare Wilson