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Tuesday, 13 May 2008

Canada: Denial and denialism conflated in Montreal Gazette story

A rather confused article that links individual denial with the denialist movement and criminal prosecutions for HIV exposure and transmission was recently published in The Montreal Gazette.

It is notable for highlighting the problem of AIDS denialism, which was unsuccessfully used as a defence by Andre Parenzee during an appeal for criminal HIV transmission in an Australian court last year.

However, I am not particularly happy with the choice of words used by Dr. Vinh-Kim Nguyen, an AIDS physician and anthropologist at the Université de Montréal. After explaining how personal denial is an understandable psychological response to an HIV diagnosis, he likens non-disclosure to "Russian Roulette."

"They say: 'I feel healthy and I'm not going to take drugs.' There's a lot of baggage that comes with an HIV diagnosis," he said.

People go into denial around fatal illnesses, Nguyen added.

"They're just not psychologically ready to take medication and be reminded twice a day that they have a potentially fatal illness. The psychological denial is completely understandable."

While failing to disclose HIV status to an unsuspecting partner isn't the same as saying HIV doesn't exist, "it's still playing Russian roulette," Nguyen said.

The complete article from The Montreal Gazette is below.

Deadly consequences of ignorance
Despite millions of deaths worldwide, some people claim HIV doesn't exist or that it has no link to AIDS
Montreal Gazette
Monday, May 05, 2008

Gabrielle Martineau flew into a rage when a blood test confirmed she had unknowingly infected her baby daughter with the virus that causes AIDS.

Trusting that she was in a monogamous relationship, Martineau didn't practise safe sex. She was planning to have a baby.

But her partner hadn't revealed a crucial health factor: his HIV positive status.

Twelve years later, the South Shore mother and child continue to live with the consequences: a daily regimen of pills, drug side effects, fatigue and illness.

"He just said he gave it to me in the same way he got it, (through sex)," Martineau, 31, said, recalling her partner's answer to the question: "Why did you do it?"

"I was floored," she continued, her voice shaking.

"I didn't know what to do."

AIDS denial comes in as many forms as the deniers themselves.

Some claim the human immunodeficiency virus doesn't exist or is harmless; some argue it's a medical conspiracy to sell drugs, and some, like Martineau's partner, behave as if in personal denial, witRating 2 olding the truth about their condition from their unsuspecting sexual partners.

But regardless of its guise, denial continues to confuse and kill, experts say.

"We have enough women die of HIV/AIDS to know it's true and not a hoax," said Daniella Boulay-Coppens, executive director of The Centre for AIDS Services of Montreal (Women).

"These are ordinary run-of-the-mill women, not drug users, not prostitutes, not homosexuals."

More than 68 per cent of the women seeking help at the centre were infected by partners who kept silent about their condition, Boulay-Coppens said, including a bank executive who believes she got infected during a 25th-wedding anniversary cruise with her husband.

"Nice gift," Boulay-Coppens said dryly.

- - -

David Crowe, president of the Alberta Reappraising AIDS Society, a group that questions the scientific connection between HIV and AIDS, says there's no need to wear condoms to ward off HIV infection because there's no proof the virus exists.

But the courts disagree.

Canada's highest-profile criminal case to date involving non-disclosure of HIV status saw former Canadian Football League linebacker Trevis Smith plead guilty to knowingly exposing two women to the virus that causes AIDS by having unprotected sex with them and not revealing his condition. Found guilty in February of aggravated sexual assault, he is serving a six-year prison sentence.

There's a similar court case in Australia and another pending in Canada.

Defence lawyers in the Australian case - the man was convicted of knowingly exposing women to HIV - are saying HIV is not a real virus and it cannot be transmitted sexually.

Those are classic denialist claims, said virologist Mark Wainberg, director of the McGill AIDS Centre at the Jewish General Hospital and past-president of the International AIDS Society. The lawyers argue HIV science is dubious, Wainberg said, contrary to the position adopted by the World Health Organization.

HIV attacks and weakens the immune system. The body is then unable to defend itself against common illness. The virus often leads to a chronic, progressive illness because it leaves infected people vulnerable to opportunistic infections and cancers, scientists say.

Those who say HIV is not definitively linked to AIDS are a part of small,

ill-informed fringe group but they have global impact that's lethal, Wainberg warned.

"This is a serious issue. The potential for harm includes persuading people they don't have to protect themselves against HIV," Wainberg said.

"For us, this is not an issue that has two sides."

Crowe counters the science is not clear cut.

"Why are people so anxious not to have scientific discussions?" he asked.

Crowe says he prefers to be called an AIDS "dissident" rather than "denialist," which he says is an unflattering, pejorative term.

With the global AIDS scourge killing 25 million people and the virus infecting another 40 million, HIV professionals say they are baffled that denial endures.

"It is a terribly destructive phenomenon and it has resulted directly in the death of people," said Joanne Csete, executive director of the Canadian HIV/

AIDS Legal Network, an advocacy organization working on the legal and human rights issues surrounding the illness.

"It's particularly sinister in developing countries, where people don't have access to medication and information."

You have only to look to South Africa, she said. Until recently, President Thabo Mbeki infamously denied the link between AIDS and HIV while his health minister advocated a vegetable therapy - beetroot, garlic and lemon juice - instead of life-saving anti-retroviral drugs. Without access to drugs, prevalence of HIV jumped to an estimated 20 per cent of the country's population.

"Many of our organizations have run into denialism along the way and we've fought against it as we can," Csete said.

"Some people clearly have a profit-based motive for denialism; others are in personal denial. But whatever the motivations, denialism has been extraordinarily dangerous."

Discredited German-born vitamin salesman Matthias Rath, now of South Africa, supports the denialist view that anti-HIV drugs are making people sick.

In advertisements in newspapers like the New York Times and on the Web, Rath has aggressively marketed his own concoction of micronutrients as the natural cure for AIDS, and has a strong following.

Rath could not be reached for comment.

Wainberg and other researchers on the front lines of the global AIDS crisis say there's an analogy with cigarette smoking. Sure, some smokers stay healthy, but to claim the link between smoking and lung cancer is a hoax perpetrated by personal injury lawyers or pharmaceutical companies is totally false.

"We are always concerned about people who are vulnerable listening to these (claims)," Wainberg said. "Any case of HIV transmission is a case too many.

"In 2007, we speak about HIV being one of the world's leading causes of death, and to have people challenging this is playing with the public's health."

- - -

When Sophie Brassard of Montreal refused to give her two HIV-infected sons anti-retroviral drugs, the case made newspaper headlines around the world because the boys were forcibly removed from her custody.

The children were seized at the airport when Brassard tried to flee the country; the family's pediatrician had reported the case to youth protection authorities.

Infected during pregnancy (mother-to-child transmission), the boys got sick while the mother was healthy, initially. She didn't believe HIV caused her children's illness.

In 2002, several years after dismissing the HIV/AIDS connection, Brassard died of AIDS-related complications.

About 10 per cent of HIV patients refuse to take medication, said Dr. Vinh-Kim Nguyen, an AIDS physician and anthropologist at the Université de Montréal.

"They say: 'I feel healthy and I'm not going to take drugs.' There's a lot of baggage that comes with an HIV diagnosis," he said.

People go into denial around fatal illnesses, Nguyen added.

"They're just not psychologically ready to take medication and be reminded twice a day that they have a potentially fatal illness. The psychological denial is completely understandable."

While failing to disclose HIV status to an unsuspecting partner isn't the same as saying HIV doesn't exist, "it's still playing Russian roulette," Nguyen said.

Various AIDS groups say confronting naysayers is a continuous struggle because the dissident position is readily available in cyberspace. But when two denialists showed up at recent Montreal AIDS conferences, organizers opted to let them speak.

A media storm around "free speech" would have provided them an even bigger platform, said Keith Monteith of AIDS Community Care Montreal and COCQ-Sida, a coalition of Quebec AIDS service groups.

"I'm not sure how much paying attention to them legitimizes their position," Monteith said.

"They don't need to be taken more seriously than anyone else with a kooky theory. We just have to make sure the counter-information is out there."

According to the 2006 Public Health Agency of Canada survey on AIDS awareness, 11 per cent of Canadians fall into a category called "Moderately Informed Deniers/Fearful" who tend to have the least knowledge about HIV/

AIDS and show the highest levels of discrimination toward people with the condition.

Fearing the stigma of AIDS, Martineau asked The Gazette to not publish her daughter's name.

"I've seen the ignorance and meanness. ... She will be judged and catalogued and dismissed."

Martineau and her daughter are on a daily regimen of several drugs to keep the virus at bay. Martineau temporarily stopped taking the pills, but her blood viral load jumped.

The treatment combines three anti-retroviral drugs used in treating HIV-infected patients to prevent the infection from progressing to AIDS.

It's been two years since Martineau revealed to her daughter, now 12, the reason she's taking medication: "She asked me about dying young. That hit me hard."

For Martineau, the alarming discovery that her partner was HIV positive came during a dinner conversation when guests, old drinking friends of his, brought it up casually.

"They knew, but I didn't. I waited till they left to confront him."

The next day, Martineau and her 9-month-old baby went for blood tests at the nearest HIV clinic.

"I was furious. I wanted to kill him. But then I would have ended up in jail," she said.

"This illness is already a prison and I don't need another."

But like many who come to the women's centre for support, Martineau did not attempt to get justice from the legal system. She doesn't believe she could win her case in court.

"It would have been my word against his that he deliberately infected me."

Also, she didn't leave her partner for six months. "I thought my life was over anyway, " she recalled. "I didn't think anyone would love me."

She left, she said, when her partner became violent, physically and emotionally.

Martineau doesn't have a job because of the illness. Instead, she does volunteer work helping other HIV-infected women, and lectures in schools about safe sex practices.

"The anger is still there, but I'm keeping my energy for me, for my child and for fighting against this kind of ignorance."

- - -

Dissidents Have Their Say

Denialists regularly reject the ideas that precautions against infection are required, HIV testing is appropriate, monitoring disease progression is necessary, treatment saves lives, and that AIDS is a real epidemic or even a real medical condition.

It's not the virus making people sick, but other factors, including anti-HIV drugs like AZT, they say.

Some of better-known names in the denialist camp include:

- Writer Celia Farber. She drew more coverage for her views last year when Harper's magazine ran her 15-page story, titled Out of Control: AIDS and the Corruption of Medical Science.

- Christine Maggiore, the HIV-positive founder of Alive & Well AIDS Alternatives. She continues to reject anti-retroviral medications and denies her 3-year-old daughter died of AIDS-related pneumonia, contrary to a coroner's autopsy report.

- Peter Duesberg, professor of molecular and cell biology at the University of California, Berkeley. The Duesberg hypothesis holds HIV is a harmless "passenger" virus unrelated to AIDS except by association.

These views, rejected by the medical and scientific communities as dangerous pseudoscience, can be found on the AidsTruth website:

© Montreal Gazette 2007



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