No list of Cruel and Unusual pseudoscience could ever be complete without giving special mention to Stanislaw Burzynski. While no single act or part of his operation is either cruel or unusual, the combination of many factors, makes him and his clinic near, if not at, the top of the list.
From patients being lied to about costs, being lied to about treatments, patients dying from sodium overdoses, medical records being destroyed, bankrupting treatment price tags, lack of meaningful data after near 40 years in practice, families (even after their loved ones have die at his hands) becoming advocates for the treatments offered, to name some of the more noteworthy elements, Stanislaw Burzynski is a worthy recipient of a Cruel and Unusual Pseudoscience post.
Last year alone, 27 former patients were confirmed and verified to have sadly passed away. That’s just the verified deaths, from one quiet year for the clinic. That this has gone on for so long is cruel and unusual all on its own.
Yes, that’s Stan and his wife with Pope John Paul II – More on that here.
The below text is reproduced with the permission of The Other Burzynski Patient Group and the Skeptics for the Protection of Cancer Patients. Please consider taking some time to look around TOBPG site and read some of the patient stories. There’s only 50 there so far, but there are 100’s waiting to be written. Each one a painful account of a family ripped apart by cancer and then deceived at their most vulnerable, by arguably the best snake oil salesman in the business.
Stanislaw Burzynski is a physician based out of Houston who administers a chemotherapy called “antineoplastons.” They have never, in 36 years, demonstrated efficacy or safety. Nonetheless, Burzynski charges patients hundreds of thousands of dollars for this unproven treatment. The way that it is framed is that they are entering “clinical trials,” but the man has never, ever published the final results of a single clinical trial. Instead, what we see is a string of abandoned trials–more than 60 at this point, none of them even at the stage that they might demonstrate efficacy. His only phase III trial, the type that would demonstrate efficacy, is not accepting patients as of this writing despite being approved for over 2 years. (Even though many recent patients seem to think that they are entering phase III trials.)
Of the thousands of patients who have gone to him and emptied their bank accounts at his feet, a very, very few have survived. This does not mean that he has cured them; in fact, when you look at the cases closely, you find reasons to doubt that he has cured anyone at all. Of course, the few patients who have survived this shonky treatment have become full-time advocates of Burzynski, and he has acquired something of a cult-leader status.
From the position of an informed patient advocate, everything about the Burzynski Clinic reeks of medical charlatanry. He is not a trained oncologist, but he is treating cancer. He posits a novel mechanism for cancer (a patient’s lack of antineoplastons) that is unrecognized in the medical literature as a cause. His ANP is marketed as an alternative to chemotherapy, but he gives patients chemo cocktails mixed with “terrifying” doses of sodium phenylbutyrate, mixtures that have not been adequately tested for safety and which causes hypernatremia in his patients. He has sold ANP not only as a cancer treatment, but also as an HIV treatment, an unjustified action for which he was severely disciplined by the Texas Medical Board. Checks for donations that are meant to go “toward the continuation of the Clinical Trials and Research” are to be made out directly to “S.R. Burzynski, M.D., Ph.D.” He has initiated over 60 phase II studies over the decades and seems to have published exactly zero of them. Three independent investigations, published together in The Cancer Letter, concluded that his studies were “uninterpretable.”
An important sign of quackery is the depiction of the doctor as a lone genius fighting against special interests trying to suppress crusading work. This is, of course, bunk. What is routinely cited as evidence of a vast conspiracy against Burzynski is the routine prosecution of a run of the mill repeat offender. Nonetheless saying that he has sinister forces arrayed against him gives Burzynski an excuse to never produce evidence of efficacy that could be tested by an outside group.
There is something distinctly aberrant about Burzynksi’s supporter base, and a cult of personality surrounds the man unlike anything we have seen in other medical schemes. At the root of cults is a psychological dependence on the leader, and Burzynski’s cult nurtures his patients’ dependence on him by making them fear and distrust modern medicine, stripping away desperately ill patients’ hope in legitimate, tested therapies and substituting them with his “treatment”. Abominable.
Instead of evidence garnered from clinical trials published in peer-reviewed journals, Burzynski relies heavily on patient testimonies to peddle his wares. Testimonials are no substitute for controlled clinical trials. No matter how many testimonials Burzynski and his patients put forward, no matter how passionate and moving those stories are, no matter how grateful and indebted his patients feel toward him, the fact remains that no amount of bad evidence is equal to a single piece of good evidence. He has had over 35 years to produce that single piece of good evidence and has utterly failed to do so. This, however, has not stopped him from charging $30,000 for an initial visit to his clinic and $7,000 per month for treatment thereafter. At least that’s the quote that one of his most recent victims was given. (A curious side note to this case: the above cited article reports, “The [Burzynski clinic] has currently been approved for Phase III Clinical Trial for Antineoplastons treatment and Mackey’s brain tumor met the criteria to be accepted as a patient in the trial.” When you look at the entry for the clinic’s only Phase III trial at clinicaltrials.gov, the current status of that study is “Not Yet Recruiting.” What was this family told, I want to know?)
As you might expect, many people cannot afford the cost of Burzynski’s treatment, which routinely reaches more than $100,000, and when that happens, they often make desperate appeals to the public so that they can make the trip to Houston. A year ago, when Marc Stephens started going after critics of the clinic, after seeing the testimonials of patients who appeared in ad man Eric Merola’s infomercial Burzynski (reviewed here by a horrified surgical oncologist and patient advocate), and after looking at the collection testimonials on the Burzynski patient group website, I wanted to see an unbiased sample of Burzynski’s patients. When you select your sample group by outcome, you are going to produce a very skewed view of the treatment. (This is the Texas sharpshooter fallacy, essentially drawing a bullseye around a bullet hole.) We went to archival databases to see if we could the patients who appeared in the press begging for money to see Burzynski. When we did, we found that with a single exception, every damned patient we could find in the LexisNexis Academic database who had appeared in the press begging for money to see Burzynski and whose outcome we could find had died. When his supporters don’t select the cases you get to see, a very, very disturbing picture of his practice emerges.
If Burzynski has a cure–or even a viable treatment–it is a moral imperative that he completes a phase III clinical trial that can be reproduced by other researchers, otherwise all of the other deaths his treatment would have prevented are on his hands. If he is being honest about his treatment, he is apparently OK accepting responsibility for those deaths.
If you want to help protect patients, the best thing that you can do right now is WRITE about Burzynski, putting as many relevant search terms into your title and text as you meaningfully can. You can also make a point of linking to sites that have reliable information about what really goes on at Burzynski’s clinic. Don’t link directly to the man, his site, or his patients’ sites. We need to clog the channels that people usually use to reach this clown with reliable information.
More Cruel and Unusual Pseudoscience to come! Visit our Cruel and Unusual Pseudoscience Facebook page here.