[Note: the opinions expressed below are those of the contributor alone and publication does not indicate that The Disinformation Company endorses those opinions. This post was submitted as a response to the earlier post Burzynski: Fighting the Big Pharma Cartel to Cure Cancer.]
Over 10 years ago, a friend of mine whose son had spent the better part of the past year fighting a brain tumor called me and said that her boy was too sick to be included in an experimental trial at St. Jude’s. She was truly disconsolate and desperate. She told me that she had heard of a doctor “out West” who was treating cancer patients with an extract of human urine and was reported to have cured all sorts of cancers. With a very heavy heart I had to destroy the last hope for a cure for her son; if he had really cured cancer, he would have multiple Nobel Prizes for curing one of man’s most universally feared scourges. She was devastated, but she saved her son the trial of a last long trip, and he died peacefully at home a few weeks later, which I guess is worth something.
I never forgave that doctor for putting me in that position, and only last year I found out who he was. His name is Stanislaw Burzynski. He works out of his clinic in Houston. He is the discoverer, manufacturer, prescriber, and dispenser of what he calls “antineoplastons” (ANP), which he first extracted from human urine in the 1970s but now produces synthetically. I learned his name because an occasional employee of his had sent legalistic threats to bloggers who questioned the validity of his treatments, which he has given for over 30 years under the guise of “clinical testing” with staggeringly unpromising results. What brought Burzynski back to the attention of the blogosphere was the way that Burzynski’s shill and occasional hired help, Marc Stephens, not only threatened teenageer Rhys Morgan’s family with legal action but also sent them a picture of their house, the unmistakable message “we know where you live.”
Despite the thuggery of some of his supporters (which included the creation of a website at the same IP as burzynskipatientgroup.org that defamed numerous skeptics, myself included, as pederasts), his decades-long failure to produce a single convincing study about ANP’s efficacy, and the fact that his medical license is under review for a host of alleged ethical violations, including “the failure to meet the standard of care, negligance, lack of informed consent, unprofessional conduct, and nontheraputic prescribing,” Burzynski continues to practice. The aggravating factors applied to the Texas Medical Board’s lawsuit include:
1 Harm to one or more patients;
2 Economic harm to any individual or entity and the severity of such harm;
3 Severity of patient harm;
4 One or more violations that involve more than one patient; increased potential harm to the public;
5 Intentional, premeditated, knowing, or grossly negligent act constituting a violation; and
6 Prior similar violations. (Source: casewatch.org)
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 completed exactly zero of them. Three independent investigations, published together in The Cancer Letter, concluded that his studies were “uninterpretable,” and that Burzynski defined successful treatment as “stable disease,” a lowered standard that no other oncologist or researcher accepts.
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 that I 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. She died last week. (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 Burzynksi’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.) I went back into my university’s databases to see if I could the patients who appeared in the press begging for money to see Burzynski. When I did, I found that with a single exception, every damned patient I could find in the LexisNexis Academic database who had appeared in the press begging for money to see Burzynski and whose outcome I 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.
It turns out that I’m not the only one who has tried to get a sense of Burzynski’s outcomes, since he is not forthcoming with it. In 1985, The Canadian Bureau of Prescription Drugs followed up with doctors whose patients had gone to Burzynski. Of the 36 cases they tracked down, only two remained alive at the time of the survey, and they had both had radiotherapy before going to Burzynski (they both were still fighting cancer). There was little indication that any of the other victims had responded to Burzynski’s treatment either. If he 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 I may anticipate a number of objections this essay is likely to spawn. The first will be a litany of examples of people who have gone to Burzynski and who are still alive. “Explain this then!” Burzynski’s supporters will say. They fail to realize, of course, that it is not my job to explain how this person survived an encounter with this doctor. The burden is on Burzynski to demonstrate that his treatment contributed to the patient’s survival. The only way to establish whether or not it is likely that a patient was cured by Burzynski is through a controlled drug trial designed to evaluate efficacy. Trying to shift the burden of proof onto the skeptic is does not magically give Burzynski a valid phase III clinical trial. Or a single phase II trial, for that matter.
The second objection that will be raised will sound something like, “Who’s paying you to write this?” Unfortunately, nobody. But let’s pretend that it’s true, that I am Big Pharma’s spokesperson and that I merely post under my name what is handed to me in an envelope by a shadowy figure in the FDA parking garage. Burzynski still hasn’t, in 30 years, bothered to produce a single study that convincingly suggests his drugs work. Find me one, and I will turn on my evil naughty paymasters and tell all!
The third objection will be, “Conventional therapy is expensive and barbaric and often ineffective.” This is sadly true. However, all other cancer researchers are expected to show their work, and there are gobs of independently verified evidence that show that while modern cancer treatment can be staggeringly unpleasant, traumatic, and uncertain, the best practices in the aggregate improve patient outcomes. This is what Burzynski has failed to demonstrate in spades and is why no competent oncologist would ever commend her patient into his care. We don’t expect him to produce anything more than the bare minimum amount of evidence that every respectable researcher produces.
In my opinion, Stanislaw Burzynski is a predator, a medical monster on the order of John Brinkley, the Depression era goat-gland doctor who made millions maiming countless patients. Most despicable of all is that he exclusively targets the most desperate and most vulnerable patients before leaving them to their fate. It baffles me that Houston, the local government, and the local press have tolerated his presence for decades. At the very least, it seems that the FDA and Texas Medical Board are trying to crack down on him, but they have had over three decades to do so. There are few things worse than cancer. I believe Stanislaw Burzynski is one of them.