What to do about science denialists

This week's column from the Kingston Whig-Standard.

One of the privileges that comes with being an academic is that one is comparably mobile, the world really is one’s job oyster.
I chose to work between 2000 and 2005 in a medical school in Johannesburg, South Africa. Sub-saharan Africa at the time was the world’s region worst hit by HIV and AIDS. At a time when HIV infected people in the West got used to the idea of living to old age, people around me literally were dropping like flies. Talk about culture shock! In the condo-complex where I lived, several of our staff members died preventable AIDS-related deaths. One of my staff member’s life-partner died from AIDS, too. He had just matriculated from college.

Many of our students were infected and discussions began in the university whether we had a responsibility to sponsor medical insurance to ensure their survival while they were enrolled with us. To the outsider this might look like an issue best understood as people in the developing world being unable to afford access to life-preserving medication. And, to be fair, the price tags of essential medicines in many developing countries remain unacceptably high. However, this is not what actually caused in excess of 360,000 entirely preventable HIV-related deaths in South Africa.
The country’s president at the time, Thabo Mbeki, and his health minister, Manto Tshabalala-Msimang subscribed to wild conspiracy theories involving Western agencies wanting to crush African people’s aspirations. In their paranoid world AIDS medicines were a means to poison Africans. HIV was not the cause of AIDS, and AIDS didn’t quite exist as a new disease. They duly found a high-profile, ironically white, United States academic and a few of his, ironically white, allies to confirm their worst fears. Being the country’s president, Mbeki quickly set up a presidential expert panel involving mainstream scientists and a bunch of denialists. A funny idea to create a sparring match between discredited academics and mainstream academics and encourage them to entertain your paranoia. Mbeki clearly thought that a scientific consensus is reached not by evidence but by discussion and some kind of compromise (as if HIV could cause AIDS just a little bit, depending on the compromise reached).

Well, Mbeki and his side-kick Tshabalala-Msimang enforced policies aimed at keeping as many impoverished South African AIDS patients away from life-preserving medicines as was possible. HIV infected pregnant women were not given access to medicines proven to drastically reduce the risk for their newborns to be HIV infected. Thousands and thousands of HIV infected newborns came into this world as a result of these crazy policies. A Harvard University study estimated that in excess of 360,000 South Africans died preventable AIDS deaths during Mbeki’s reign. Some of the medical doctors in public sector hospitals who prescribed and provided AIDS drugs to their infected patients were disciplined by hospital managers carrying out the health minister’s orders.
Ask yourself how the world would have responded if such genocidal policies had been implemented by the apartheid regime preceding the ANC government that’s running the country today. No doubt international bodies would have busily prepared genocide charges. No doubt international campaigns would have got off the ground blaming the racist government for the preventable deaths of such a large number of South Africans. A black politician with liberation credentials presiding over what could demonstrably be described as genocide barely led to people batting their eyelids. Human lives clearly remain cheaper even today in that part of the world than elsewhere. Another, even crazier, head of state, Gambia’s president Yahya Jammeh insists that a herbal concoction he invented cures AIDS. Foreign aid workers disbelieving the story end up being kicked out of the country, and any Gambian criticizing his take on this medical problem end up in jail. Meanwhile Jammeh instructed HIV infected people to stop taking AIDS drugs.

What bothers me greatly is that government policies leading demonstrably to large numbers of preventable deaths remain unpunished. It is one thing if Mbeki had said that his government decided not to provide AIDS drugs due to their high cost. If you don’t have the resources to treat everyone it is fair game to allocate resources. But denying access to life-preserving medicine to large numbers of impoverished South African public sector patients because of truly crazy ideas about Western conspiracies is surely something else. Yet Mbeki walked away, enjoying today his generous retirement pay-out. His alcohol guzzling health ministerial side-kick died eventually of liver cirrhosis. Even there she remained true to her unethical form by jumping the queue toward a donor liver.

Well, enough on AIDS. This week United States talk show host Katie Couric used her show on national TV to peddle nonsense about the HPV vaccine. In Mbeki style she juxtaposed scientific mainstream views with anecdotes supplied by vaccine critics. The impression created was that there is a genuine debate, that there are genuinely two sides to this vaccine, when patently there are no two sides. While some of the stories presented were genuine human interest stories, they showed nothing relevant at all with regard to the safety and efficacy of this vaccine. It was clearly irresponsible of Couric to give a high-profile stage to quacks promoting their anti-science agendas. Almost certainly as a result of her action people who would clinically benefit from getting vaccinated won’t get vaccinated. Some of these women will eventually go on to develop cervical cancer. Is it acceptable, for the sake of ratings to promote quacks’ views on national television? I doubt it.

To be fair, Couric’s case is different to Mbeki’s actions. Women choosing not to get vaccinated did it on bad information they received through her TV show. Arguably women making such important health care choices would do better than to listen to anecdotes on a talk show when making important health care related choices affecting themselves. Let the buyer beware, as the old Romans said. On the other hand, the impoverished HIV infected South Africans depended on the national health care system to deliver life-preserving medicines. They did not have the luxury of choice to begin with. So, while the blame for bad choices in Couric’s cases arguably should be shared between those who act on anecdotes heard on her talk show and those who produced the show, the blame in South Africa falls squarely on Mr. Mbeki’s shoulders. Remarkably until today he was neither prosecuted nor did he ever utter an apology for the genocidal policies he presided over.

Udo Schuklenk teaches bioethics at Queen’s University, he tweets @schuklenk.

Sorting out HIV/AIDS denialists

For those of you who have never heard of a small but all the louder band of scientists and activists who deny that HIV is the cause of AIDS, you might find this paper\ interesting that I published in the Journal of medical ethics a few years ago. I was surprised to read today in Toronto's Globe and Mail a piece by Mark Wainberg who is director of McGill university's AIDS Centre and John Moore, a medical professor at Cornell University's medical school. They argue essentially that we should prohibit HIV dissidents from campaigning among the lay public for their warped views on HIV/AIDS. They argue that these dissidents' views are akin to scientists telling teenagers in school cafeterias that smoking is healthy. Very much in line with the arguments I advanced years ago in the Journal of medical ethics. Check it out!

Here's their commentary:

AIDS and the dangers of denial

MARK WAINBERG AND JOHN MOORE

July 4, 2007 at 12:46 AM EDT

Imagine the scenario: The cafeteria at your child's high school is frequented by a few individuals telling your children that it's fine to smoke. They make passionate exhortations that statistics linking cigarettes to cancer, stroke and heart disease are flawed, because many people have smoked regularly without ever suffering ill effects. They say lung cancer is twice as common in women as it was two generations ago because of other causes, such as exposure to jet fuel fumes, a super-poison unleashed by rogue former KGB agents or a shadowy oil-driven cabal. They tell your child that the link between cigarette smoking and cancer is a hoax perpetrated by personal injury lawyers.

What would you do? Would you contact the school board or the police department and ask that these crackpots be removed from the premises? Or would you defend freedom of speech as an important right that must be preserved under all circumstances, even if it might provoke reckless behaviour and even death?

We live in an time when information is available and disseminated to society, including our children, in myriad ways. In the absence of an effective filter to protect the vulnerable, disinformation can kill. And while we spend billions of dollars worldwide in public service announcements educating our children about the perils of drug use and unsafe sex, we do little or nothing to counter the bewildering chorus of voices arguing that HIV, a virus that has killed more than 25 million people around the world in the course of a single generation, is utterly harmless.

People who argue that HIV does not cause AIDS have formed clubs, published newsletters and freely disseminated terribly harmful information on this subject through the Internet and other widely available channels. Attempts to shut down these sites or to prevent the dissemination of denialist literature are routinely dismissed on the grounds that dissenters have a right to express their views and that the public interest is better served by the defence of freedom of expression.

The latter sentiment appears in a letter to us — researchers on the front lines of the global AIDS crisis — from the provost and vice-president of a well-known U.S. university, after we complained that one of his faculty members had written a book based on an HIV-AIDS denialist position. The university should have shown leadership on the issue and dismissed the faculty member from her position, rather than hiding under the cloak of academic freedom.

We submit that the same standards of public health enforcement should apply to HIV-AIDS as to cigarette smoking and to other organisms, such as tuberculosis, that cause epidemic infectious disease.

We have long accepted that free societies do have an obligation to impose restrictions on freedom of speech in the interest of public safety. Among other jurisprudence, Supreme Court Justice Oliver Wendell Holmes famously opined in Schenck v. United States (1919) that the right to free speech does not permit one to falsely yell "fire" in a crowded movie theatre because of the injuries and deaths that would ensue as people stampeded toward the exits.

HIV denialism is lethal. It is responsible for the infections of at least several hundreds of thousands more people around the world than would have otherwise been infected and died. South African President Thabo Mbeki and his health minister, HIV denialists until last year, were among those in Africa whose refusal to be content with mere ostrich-like obliviousness, whose insistence on propagating flagrant disinformation about the disease, amounted to an arguably criminal abrogation of leadership.

Last summer, when political pressure generated by the International AIDS Conference in Toronto caused them to finally reverse their position, a scientific presentation there estimated that the number of HIV-infected people in South Africa was approximately 25 per cent higher than otherwise because of that country's policies.

The reasons for AIDS denial are probably as varied as the deniers themselves, but they're clearly not all motivated by political expediency. In the United States, the daughter of an HIV-infected woman named Christine Maggiore died of AIDS two years ago because she was not treated with anti-HIV drugs. The mother's reasoning was that the drugs could not possibly have done any good, since they act against a virus that has nothing to do with AIDS. In Canada, a similar case resulted in the custody of two HIV-infected children being transferred to foster parents who ensured that proper care was received. Those children have thrived.

In a recent case in Australia, a man was charged with transmitting HIV to several sexual contacts. He had been fully aware of his HIV-positive status, but argued that it had not been conclusively proven that HIV was the cause of AIDS. The defence based its case in part on information found on the websites of members of HIV denialist movements. The man was convicted, but is now appealing, and a spate of similar cases are pending in North America and elsewhere.

Our lawmakers need to enact legislation to put appropriate limits on such irresponsible expression and to counter the ongoing damage perpetrated by denialists. The scientific evidence that HIV causes AIDS is no less incontrovertible than the evidence that cigarette smoking causes cancer and heart disease. At a time when progress in HIV-AIDS drug treatments and life expectancy is informing an alarming new complacency in our children, policy-makers should defer to proven scientific fact and stop the transmission of deadly lies.

Dr. Mark Wainberg is director of the McGill University AIDS Centre at the Jewish General Hospital in Montreal. He was co-chairman of the International AIDS Conference in Toronto in August, 2006. Dr. John Moore is a professor of microbiology and immunology at Cornell University's Weill Medical College in New York.

HIV dissidents - continuing crackpottery causes untold harm in Africa

I have written before about the unprofessional conduct of a small group of scientists insisting that HIV isn't the cause of AIDS, that AIDS isn't an infectious illness and importantly that medication proven to keep people with AIDS alive actually causes AIDS.

Well, these folks pretty much lost their battle for the professional and public opinion in the developed world, so they shifted their lunatic campaign to the developing world. You can find a pretty detailed analysis of their activities in Southern Africa here. South Africa in particular carries one of the highest HIV disease burdens in the world. I don't want to spend too much time dwelling on the reasons for that, except to say that this is caused by a mix of poverty, education and importantly a government propagating these minority views until very recently. The ANC government as a trusted source of information spent years sending out misleading, confusing and outright false information on HIV/AIDS.

A few days ago I received this message from an outfit in Kwazulu Natal:

The subject heading of the email ... 'HIV not a real problem its [sic!] the sugar'

The spam-type email continues:

'Dear friends,

You believe in HIV because you did not know the real facts.

We make a juice (UMLINGO WAMANGCOLOSI) that lets any one start their life again, strong and healthy.

All you have to do is stop the following food, drinks and stress:

1. SUGAR

2. Chemicals

3. FACTORY FARMED MEAT

4. MILK

5. CHEMICAL MEDICATION

6. PROCESSED FOOD

7. ALCOHOL

8. STRESS

Visit us every monday and thursday between 9 and 16.00pm at the KwaNgcolosi Court House and you will be healthy with in weeks.

KwaNgcolosi is under Hillcrest/Waterfall by the Inanda Dam just 40Km from Durban.'

I wonder how many, mostly Black, South Africans will fall for this nonsense and die a preventable death from AIDS due to this quackery!