A Film Producer, A Cancer Doctor, And Their Critics

I just returned from the Cleveland Clinic, one of the world’s most respected medical centers. By a quick check on PubMed, the (young) doctor I met there has about 60 publications to his name, all in well-respected journals. He’s recognized as one of the best in his field, and people come from all over the world to visit him and his colleagues for surgery. I found out about him through my usual channels: I spoke to a half-dozen cardiologists and called a colleague at the Clinic whose opinion I trust.

Most people don’t have the advantage of picking up the phone to talk to experts; I did this for a patient because it’s unlikely he could have done it for himself. The Clinic certainly does some marketing, both by reaching out to doctors in various publications and presumably with the help of a good marketing and PR department. Still, patients will likely rely on referrals to get to specialty centers.

Contrast this to the controversial clinic run by Dr. Stanislaw Burzynski. His clinic claims to have a unique approach to cancer involving an experimental (and expensive) treatment he calls “anti-neoplastons”. The basis for these claims is controversial to say the least and I’ll leave it to others to go into detail.

Most of the country’s most important cancer centers are at large, multi-disciplinary institutions staffed by well-published researchers and clinicians with access to the latest research and patient care. Caring for cancer patients requires expertise at every level, from the training of the doctors and nurses, to the ancillary services that are more “behind-the-scenes”, such as infection control, radiology, and pathology. Important, successful cancer centers educate other doctors and publish their research to help keep smaller institutions as up-to-date as possible. Their mission is to explore, treat, and educate.

The Burzynski Clinic seems to be quite different. For one thing, it’s marketing seems to rely more on patient anecdotes than actual data (the front page of his website celebrates birthdays and other special events of his patients, and gives space to heart-warming stories). There are also a couple of fan movies circulating, produced by Eric Merola. I have seen no evidence of a formal connection between Merola and the Burzynski Clinic, but it sure is unusual for a medical center to generate fan films. It’s even more unusual for a film critic to be harassed (in my opinion) by a fan-film producer.

A well-known “vlogger” who goes by the handle “C0nc0rdance” reports receiving a DMCA take-down notice from Eric Merola after posting a video critical of Burzynski. According to C0nc0rdance:

He objected to my “Fair Use” of a small low-res image of his movie poster. He used the legal thuggery tactic of submitting a false DMCA in order to force me to give him my home address so that I can be the subject of legal harassment and intimidation by his lawyers and media thugs.

And later:

I’ve been in touch with Eric Merola by email, and he’s agreed to retract his copyright claim if I can get his email removed from all the mirrors. That seems a reasonable request to me. If you would check to see if you have his email disclosed and remove it, I would appreciate it. Thanks, -C.

Note that the remedy requested was not about removing specific copyrighted content. As a public figure issuing threats to another public figure, I don’t see how he should be entitled to hide his email, but I am not a lawyer.

I am, though, a doctor, one who has to evaluate the credentials of my colleagues daily so that I know if my patients are getting the best possible care. A search of the American Board of Medical Specialties shows that not only is Burzynski not an oncologist by the usual definitions (completing a relevant residency and fellowship in his area of practice), he’s not even a board-certified internist. This doesn’t mean he can’t be an effective clinician or researcher but becoming board-certified isn’t all that difficult (intellectually, that is. It is a bit of a bureaucratic hassle). I don’t refer my patients to doctors who aren’t board-certified.

His publications in the field of cancer are few, and when they are clinically-based  they usually rely on very small samples of patients, what I might call a “case-series” rather than a useful study.

Burzynski administers his experimental “antineoplaston” therapy under the aegis of clinical trials, but of sixty-one registered trials, he has completed only one and has not published the results of any of them. Rather than a traditional trial setup, his patients pay tens of thousands of dollars for the privilege of participating in the studies (not the most ethical or effective subject selection strategy).

Burzynski’s treatment statistics (survival rates, etc.) are not made publicly available; all we get are anecdotes, nothing to help us compare his clinic to others.

My experience with the Cleveland Clinic could not be more different from my exploration of the public face of the Burzynski Clinic. One is a world-class institution filled with talented researches and clinicians helping disseminate the latest research in many fields. The other is a personality-driven clinic with questionable ethical standards that, despite claims of effective new treatments, declines to publish results that can be used by the rest of the medical community.

Speech is best countered by more speech. It is my belief that critics of Burzynski, when expressing opinions and verifiable facts, play an important role in the medical and patient community. Attempts by supporters of Burzynski to shut up critics (by whatever reasoning) is antagonistic to the goals of medicine to collect, analyze, and disseminate information.

Article source: http://www.forbes.com/sites/peterlipson/2013/04/19/a-film-producer-a-cancer-doctor-and-their-critics/

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