In denial

Christina Maggiore died of an AIDS-related illness on December 27, 2008. She was a successful businesswoman who started a multimillion-dollar import/export clothing company, and a freelance consultant for U.S. government export programs. Maggiore is most notorious for her role as an HIV-positive activist who promoted the idea that HIV is not the real cause of AIDS. She was an HIV-denialist.

Maggiore was diagnosed with HIV in 1992. In 1994, she met Peter Duesberg, a molecular biology professor at the University of California at Berkley. Duesberg convinced Maggiore that HIV does not lead to AIDS. A year later, Maggiore started one of the largest networks of HIV-denialists and skeptics, called Alive & Well AIDS Alternatives.

Maggiore refused antiretroviral treatment for HIV because she did not think HIV would lead to AIDS and AIDS-related illnesses. She did not take the recommended treatment for pregnant HIV-positive women to prevent mother-to-child transmission. Her child died at the age of three from Pneumocystis jirovecii pneumonia. The Los Angeles County coroner and various other independent pathology experts concluded that the death was a direct result of her untreated HIV that had progressed into AIDS.

W hen asked about Maggiore, Mark Wainberg, director of the McGill University AIDS Centre, becomes enraged: “Christina Maggiore and her daughter died because they didn’t get treated…. Their story is tragic, but the reality is, Christina 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.”

Maggiore and her daughter’s deaths are only two of many that result from denying the causal link between HIV and AIDS.

There is overwhelming scientific consensus that HIV, human immunodefiency virus, attacks the body’s immune system and leaves it vulnerable to opportunistic infections like tuberculosis, pneumonias, and the common cold. Left untreated, the immune system becomes severely compromised (often eight to 12 years after first exposure to the virus). When the CD4+ cells – those involved in a normal immune response – drop below 200 per µL of blood, or when there are AIDS-related diseases present (chronic dementia and certain cancers for example), the condition is known as Acquired Immunodeficiency Syndrome (AIDS).

T his past June, an article titled “The X Factor” by Bruce Livesey appeared as the cover story in Maisonneuve, a well-established Montreal-based magazine. It profiled a 61-year-old Torontonian named John Scythes, and his arguments for why HIV might not be the only cause of AIDS.

Most people working in HIV and AIDS research and with HIV-affected communities have heard it all before. In fact, everything published in the article has already been said elsewhere, usually in less mainstream media, and each pseudo-scientific argument is easily deconstructed.

According to Jason Szabo, a medical doctor and historian involved in HIV care and clinical research at the Montreal General Hospital, the most concrete evidence that HIV is the sole cause of AIDS came in the nineties when an effective HIV treatment, using protease inhibitors (drugs that inhibit viral replication), became available and dramatically reduced AIDS-related deaths. As an example, Szabo cites a 1998 study published in the New England Journal of Medicine, which has been referenced over 4,000 times.

“It demonstrates the indisputable link between the introduction of protease inhibitors in late 1994 and the inverse correlation with death,” Szabo said.

Ken Monteith, director of the Quebec Coalition against AIDS (COCQ-SIDA), witnessed firsthand the effectiveness of these treatments both as a person living with HIV and through his roles in both COCQ-SIDA and the AIDS Community Care Montreal (ACCM).

“I don’t understand closing your eyes to that proof. It must be that people have not seen anyone come back from the brink of death due to treatment for HIV and not due to treatment for something else,” Monteith said. “Now tell me that HIV has nothing to do with the illnesses that they had before?”

Szabo also pointed to South Africa’s denialism disaster wherein former president Thabo Mbeki and his minister of health, Mantombazana Tshabalala-Msimang urged citizens to eat garlic rather than provide them with antiretroviral treatment. According to numerous studies, including one recently published by the Harvard School of Public Health, the Mbeki administration’s neglectful policies led to over 300,000 needless adult deaths due to AIDS and 30,000 infant HIV infections.

Scythes uses pseudo-scientific arguments to confuse readers. For example, he points to the excess of money and effort dedicated to HIV research and the failure of the scientific community thus far to find a cure for AIDS or a vaccine for HIV. In the article, Scythes is quoted saying, “If HIV were panning out the way you and I think it should, these vaccines should be working a little bit.”

Szabo explained, however, that HIV is an extremely versatile and fast-mutating virus.

“Within a population or a given individual, the virus is characterized by a stunning degree of diversity,” Szabo said. “And so it’s been proven to be, despite incredible investment of time, money, effort, and will, incredibly difficult to develop a vaccine – not because HIV isn’t the cause of AIDS, just that some problems are incredibly complicated.”

Another argument brought forward in the article was that some people infected with HIV can live very long and healthy lives, and do not develop AIDS. Ironically, HIV-positive basketball star Magic Johnson, who is currently following a strict antiretroviral regimen and has also advertised GlaxoSmithKline’s HIV medications, was cited in the article as an example of such a healthy individual. Nonetheless, it is true that some people with HIV do live long and healthy lives without treatment. Szabo explained how this could be.

“Some people’s immune function deteriorates very quickly and they die quickly, some average eight to 12 years, and at the other extreme, there are those…who [do] not progress clinically long-term. We are not designed [as a] species to all succumb to the same biopathogen,” Szabo said.

The article in Maisonneuve focused on whether syphilis could be another cause of AIDS. Scythes cited evidence that syphilis was very similar to AIDS, especially in the later stages of the infection. He found that those with untreated syphilis often died from illnesses similar to those who die from AIDS, like various pneumonias, tuberculosis, and cancers. He also explained how some research has shown that syphilis infections are often missed and left undiagnosed. He wonders if syphilis is in fact present in more AIDS cases than is known, and if it can it be a cause of AIDS.

Szabo highlighted the non-logic of this argument: syphilis rates are currently rising, yet AIDS death rates are falling.

“Over the last 10 years, even though the death rates for AIDS have remained well below levels seen in the late eighties and early nineties in North America, the rates of other diseases like syphilis have gone up considerably. To say that there’s absolutely no evidence on one side, and overwhelming evidence on the other side is an understatement,” Szabo said.

Szabo also stressed that one must make the distinction between a virus leading to AIDS and a cofactor. He warned that although it is accepted that HIV is the only cause of AIDS, the presence of cofactors, like syphilis or other sexually transmitted infections, not only increases the likelihood of transmission of HIV (due to irritated mucosal membranes) but also has an effect on disease progression.

Many researchers and members of the HIV community-based organizations are fed up with the persistent and incessant sensationalism over whether HIV is the only cause of AIDS.

Wainberg notes that some HIV-denialists may have unethical and misguided motives.

“HIV causes AIDS. There is nothing to discuss…. One side has scientific credibility and the other side is completely full of shit,” Wainberg said. “These people, some of them are neo-Nazis. I mean that seriously…. Some of them want people to die because they’re black, or they’re gay, or they’re disadvantaged. Some of these people are motivated by the worst considerations that you can imagine.”

Monteith cited his experiences at ACCM wherein an HIV-denialist persistently contacted the organization to refute the causal link between HIV and AIDS.

“Community organizations [like ours] don’t treat people, but our staff and resources help build networks and make it possible for [people living with HIV to] rebuild social circles and societal lives,” Monteith said. “When those resources are being preoccupied with having to respond to things that are not proven, [resources are wasted].”

On a more fundamental note, one has to question whether it is at all useful or meaningful to publish an article that has the potential to mislead so many people. To be sure, Maisonneuve’s article attracted attention and may have earned them a few more advertising dollars, but what was achieved in giving a legitimate forum to an argument that has repeatedly been scientifically deconstructed?

For one thing, it misleads the general public into thinking this is a serious debate. In fact, when the idea of an anti-HIV-denialism piece was pitched to The Daily Features editor, Whitney Mallett immediately quoted the Maisonneuve article saying that she had been swayed to believe there may be other causes for AIDS.

It is undeniably difficult for readers to differentiate pseudo-science from legitimate scientific debate, and for editors without science backgrounds to represent this issue accurately. While the Maisonneuve article arguably presents “both sides,” it leaves readers with the overwhelming impression that further research into alternative causes of AIDS is warranted. The subtext, of course, is that if HIV is not the sole cause of AIDS, perhaps collusion exists between Big Pharma and greedy scientists and that treatment may be unnecessary. True, Scythes does not deny that HIV is one of the causes of AIDS, but nowhere in the article is he quoted saying that HIV-positive individuals should continue to take treatment.

What responsibility does a publication have to represent accurately a subject that could cost lives both through the diversion of money into unnecessary research and through refusal of treatment? In particular, to what extent did Maisonneuve represent the rigorous process of peer review that the science of HIV has been subjected to, and what amount of space was dedicated to propping up Scythes “scientific credentials?” (According to the article, he is on a first-name basis with “leading disease researchers” and has travelled extensively to present papers.)

André Picard, the Globe and Mail’s public health reporter, said that while journalists often have to try to present varying opinions, it is also important to figure out how much attention a debate should be given.

“We have to try to report responsibly, and the reality is that there are going to be varying opinions. [The article] took a certain approach that gave this [debate] more attention than I would have given it…. A lot of [these tough questions are] scientifically appropriate…but it’s not always useful to have it in the public forum…. It probably misleads people more than it informs them,” Picard said.

Carmine Starnino, editor-in-chief of Maisonneuve, defended the decision to publish the article.

“We shouldn’t shy away from educating the readers on a subgroup that exists. Their existence might be inconvenient and a lot of what they have to say might be crazy, but it shouldn’t stop us from publishing a well-written piece just because we might upset some of the public or our readers,” Starnino said. “[We’re] doing what I think magazines should be doing – not shying away from topics that may get us into trouble.”

“Trouble” seems like the inappropriate word to use for an article that could cost people their lives. If someone chooses to deny that HIV is the sole cause of AIDS and chooses not to take treatment, they have made a personal choice. But spending energy to convince others to follow can have harmful – even lethal – effects.

Wainberg is more direct: “One [side] is absolutely correct; that is my side. The other side is unfortunately completely misguided and ill-informed. One can rightly argue that their side is responsible for the additional deaths of at least hundreds of thousands of people.”