Nov 28 2011

The Burzynski Clinic – Another Crank Tries to Intimidate a Blogger

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.

_______________

Some interesting follow up from Orac.

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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9 responses so far

9 Responses to “The Burzynski Clinic – Another Crank Tries to Intimidate a Blogger”

  1. lippardon 28 Nov 2011 at 9:11 am

    In the case you referenced, Burzynski was charged with 75 charges, 34 of which were mail fraud and most of the rest of which were transporting drugs illegally across state lines. After the hung jury, all of the mail fraud counts were tossed out and he faced trial with a single charge of contempt and was acquitted. This history is reported in an article in the Houston Press: http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-burzynski-sees-himself-as-a-crusading-researcher-not-a-quack/

    In an earlier case, the 5th Circuit Court of Appeals affirmed the decision of the federal district court in Texas decision that Burzynski had defrauded the Northwest Laundry and Dry Cleaners Health and Welfare Trust Fund by receiving payments for a treatment that was not FDA approved (and failing to disclose that fact): ftp://www.ca5.uscourts.gov/pub/93/93-02071.CV0.wpd.pdf

    The Burzynski Research Institute’s Institutional Review Board has also received warnings from the FDA: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm192711.htm

    The Burzynski Research Institute is a publicly traded over-the-counter stock (BZYR.OB), which means the behavior of Marc Stephens is potentially something that the SEC as well as the FDA would be interested in.

  2. dcsavakon 28 Nov 2011 at 9:35 am

    In several of the emails from Marc Stephens that have been posted by their recipients, he mentions that they have been approved by the FDA for Phase III clinical trials. Can anyone speak to this point, for a skeptic who lacks proper understanding of the clinical trial process? He seems to think that this approval legitimizes their “treatment,” but I’d like to know what this really means.

  3. Dawnon 28 Nov 2011 at 10:11 am

    @dcsavak: check out the excellent post by Dr David Gorski on Science-Based Medicine

    http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-bad-medicine-a-bad-movie/

    where he discusses the trials.

  4. Short and Spikyon 28 Nov 2011 at 10:58 am

    Do Burzynski and dodgy behaviour go hand in hand?…

    This whole thing just gets more insane by the minute. It’s bad enough supposedly reputable newspapers like The Observer giving uncritical coverage to praiseworthy, if misguided, attempts by beloved celebs to raise money for a little girl dying of…

  5. locutusbrgon 28 Nov 2011 at 11:49 am

    I have read through the posted letter in response to the “libel” letter, and “Marc Stephens” responses to the response letters. Marc does not respond appropriately as an attorney either in demands or responses. A little research shows that he is not a member of the Texas Bar, nice try PR man. I wonder if there is any penalty in Texas for attempting to impersonate an attorney. Better yet get the Texas attorney Mark Stephens involved for defaming his name.
    The problem with this type of tactic is that it works, that’s why they keep trying it.

  6. Oracon 28 Nov 2011 at 1:03 pm

    One of the bloggers who has been “graced” with a comment from Marc Stephens tells me that the IP address resolves to California, not Texas. Curiouser and curiouser.

  7. SARAon 29 Nov 2011 at 12:05 am

    I find it odd that people will not use basic logic when considering this kind of treatment. I get that the average person might not realize that 30 years is too long for preliminary tests. That a patient wouldn’t know the difference between preliminary, case or blinded studies. They might not consider that state wouldn’t have put him on trial without some fairly serious concerns about his clinic – because why would someone know that unless they looked it up, and most people don’t look up their doctor before doing to see him.

    But anyone who reads his lit sees that he’s the only one doing this treatment. For 30 years, he’s the only one. 30 years of apparent success and YET, No drug companies are knocking on his door to help him further his research. That is incongruity that anyone with basic common sense can ascertain for themselves.

  8. lizditzon 29 Nov 2011 at 1:14 pm

    Martin Robbins (science writer in the UK)

    https://plus.google.com/111513818314552647564/posts/U5c2jEmjD5p:

    I’ve just received a response from Rick Jaffe, the real attorney for the Burzynski clinic. Here’s a part of it relating to Marc Stephens, the person claiming to represent the clinic who has threatened Rhys Morgan and Andy Lewis, among others:

    “On the Marc Stephens thing, that’s what I need to look into and see what happened. What I can tell you now is that I believe that he is not a clinic employee but is an independent contractor doing web marketing, the exact scope of which I’m not sure of right now.” [...] “I can also tell you that based on my limited current information, no one at the clinic approved of or had advance knowledge that he would be sending a google map picture of a high school kid’s house to him.”

    Follow Robbins on Google+ for more, or http://www.guardian.co.uk/science/the-lay-scientist

  9. Badly Shaved Monkeyon 29 Nov 2011 at 5:08 pm

    Rick Jaffe’s response makes no sense to me. I thought they might try this tactic but I don’t think it flies.

    See here;

    http://rhysmorgan.co/2011/11/threats-from-the-burzynski-clinic/#comment-3339

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