Nov 28 2011
Here we go again. Over the past few years there have been a number of cases in which a crank, quack, or charlatan has attempted to silence legitimate criticism of their claims and behavior by threatening legal action, either shutting down their site through the ISP or suing for libel. I guess they feel that a lone blogger would be easy to intimidate. They are not part of a large media outlet with lawyers on the payroll to defend them. Defending against even a frivolous suit can be ruinous to a lone blogger.
The goal, however, is not to really sue but to threaten the blogger into silence. It is intellectual thuggery, meant to defend a charlatan who cannot defend themselves with science and evidence.
However, it is not accurate to describe bloggers who expose charlatans as “lone” – they are part of an informal web of science and skeptical bloggers who are all trying to expose fraud and pseudoscience. When one of us is threatened we have banded together to create what is knows as the Streisand effect – try to silence one blogger and a hundred voices will rise up, having the exact opposite effect that you intend.
Recently a person calling himself Marc Stephens wrote a very threatening letter to Andy Lewis who wrote a critical post about the cancer clinic of Stanislaw Burzynski called The False Hope of the Burzynki Clinic. Stephens tried to make the letter sound legal and official, even though he does not appear to be a lawyer. The letter says, in part:
Please be advised that my clients consider the content of your posting to be legally actionable under numerous legal causes of action, including but not limited to: defamation Libel, defamation per se, and tortious interference with business contracts and business relationships. The information you assert in your article is factually incorrect, and posted with either actual knowledge, or reckless disregard for its falsity.
In other words – the blog post is libel and we will sue if you don’t take it down immediately. Lewis essentially responded the way General Anthony Clement McAuliff responded when asked to surrender by the Germans in World War II – “Nuts.” The post is still up, and now there are dozens of other blog posts up also criticizing the Burzynski clinic and their attempt at silencing criticism.
Legitimate medical clinics use validated and accepted treatment methods. It is therefore always a huge red flag when a clinic offers a “unique” treatment. If the treatment works, why isn’t everyone using it? If it is experimental, then they should be following proper experimental protocol, and the treatment should be entirely free.
Dubious quack clinics, however, make clinical claims for treatments that are not based upon rigorous published double-blind placebo controlled trials that demonstrate safety and efficacy. They often just invent their treatments out of whole cloth, and make implausible hand-waving explanations for how and why they work. They typically offer anecdotal evidence only to substantiate their claims. Sometimes they may try to justify their treatments by cherry picking some basic science studies that superficially may seem to support some aspect of their claims, but they extrapolate and speculate wildly from this preliminary evidence. Some even try to claim that they have studied their treatments, but at best they offer uncontrolled case series, which are of little more value than anecdotes.
Such clinics are allowed to practice because of lax or ineffective regulations. Sometimes they hide in low-regulation zones, such as across the border in Mexico. The Burzynki clinic, however, has been able to continue to practice their dubious medicine in Texas. Often such clinics do run afoul of the law, but this is often just a nuisance; the cost of doing business. The Burzynski clinic was put on trial for cancer fraud, but the result was a hung jury.
Lewis tells this story, as well as the fact that the state of Texas is putting Burzynski on trial to take away his medical license. In response those patients who believe in him are engaged in a letter writing campaign to governor Rick Perry. This is also a common ploy. Quack cancer clinics often have those patients who believe fervently in them. If you treat enough people, some will survive and credit the guru for their survival (even though they may have also received standard therapy). Of course, those who die are not heard from. Heartfelt testimony from true-believing patients is the shield that charlatans use to defend themselves from legitimate regulatory action.
What about the treatment itself? Burzynski claims that he has discovered “antineoplastons,” which can be extracted from a patient’s own urine. These molecules then target cancer cells while leaving healthy cells alone. There is, however, no credible science behind these claims. Burzynski has published studies of his therapy, but they are small uncontrolled case series. He has been promoting his therapy for more than three decades – why is he still doing preliminary research (the last of which was published in 2006)?
Well, that is how he skirts regulation. He offers his antineoplaston therapy as an experimental protocol. However, he still charges huge sums of money for the privilege of being a subject in his “research.” Lewis tells the story of young Billie Bainbridge, who has brain cancer, and whose family is trying to raise £200,000 to send Billie to the Burzynski clinic for “experimental” treatment. I honestly don’t know how he gets away with such flagrantly unethical behavior.
Burzynski’s results have not been replicated by other researchers, and the cancer research community does not seem interested in his work. This is not because of any conspiracy – they just recognize crap when they see it. It is also extremely unusual (for legitimate research) that three decades on he is still fooling around with preliminary studies. It’s almost as if he is just going through the motions of research so that he can continue to charge large amounts of money to desperate patients so that they can get his “experimental” treatment.
Burzynski’s claims are not credible. His behavior is very atypical, and in my opinion is unethical, with all the red flags for cancer quackery. Potential patients and their families should be aware of these facts and be very suspicious of the Burzynski clinic. Meanwhile we will wait to see how the state of Texas responds to this controversy.
As for the threats against Quackometer – well, Burzynski is about to learn that the science blogosphere is a many-headed hydra, and he has just been bitten.
Also, Burzynski likes to tout that his research is FDA approved. But – here is a 2009 warning letter from the FDA citing serious deficiencies in the IRB approval of Burzynski’s research.
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