I’ve been very, very critical of a self-proclaimed cancer doctor named Stanislaw Burzynski, who is not an oncologist but somehow has managed over the last 36 years to treat patients with unapproved cancer drugs, list dozens of phase 2 clinical trials in ClinicalTrials.gov but never publish a completed one (at least to this date), and have his patients pay up up to several hundred thousand dollars for the privilege of being treated on one of his clinical trials. Meanwhile, the Burzynski Clinic and Burzynski Research Institute flout the regulations protecting human subjects in research. Even more amazingly, despite having no training in genomics and no convincing research experience in genomic medicine, Burzynski has touted himself as a “pioneer” in what he calls “personalized gene-targeted cancer therapy.” It is a therapy that, when I looked closely into it a year and a half ago, turned out to be nothing more than the use of a commercial gene test by Caris as a basis for Burzynski to “tailor” poorly thought out “everything but the kitchen sink” cocktails of chemotherapy and expensive new targeted agents in combinations that have never been validated or even tested for synergistic toxicity, all topped off with either antineoplastons or what he calls his “antineoplaston prodrug,” namely the orphan drug sodium phenylbutyrate. He is nothing of the sort. It’s not for nothing that I’ve referred to his “personalized” therapy as “personalized gene-targeted therapy for dummies.” Maybe if I have time sometime, I’ll Photoshop a book cover for that. In the meantime, I really need to update that post on Burzynski’s “personalized” therapy.
None of that stops Burzynski, and his propagandist, Eric Merola, from claiming that Burzynski is a “pioneer” in the field who is only now being emulated by the big cancer centers like M.D. Anderson and Memorial Sloan-Kettering. Such risible hyperbole would induce fits of laughter in me if it weren’t such a complete lie. I’ve searched Burzynski’s publications, and there’s no evidence that he was doing anything resembling targeted therapy 20 years ago, but to hear him tell it, you’d think he invented the concept of oncogenes and targeted agents based on genomic analyses of tumors. Truly, Burzynski’s arrogance of ignorance is astounding.
One thing, however, I’ve tried very hard not to do when discussing Stanislaw Burzynski and his propagandist Eric Merola is not to attack his patients or their families, even though Merola cynically exploits patient stories to present Burzynski as some sort of genius in cancer therapy. The reason, of course, is that I’m a cancer surgeon and hence feel honor-bound not to do so. I do cancer research and take care of cancer patients for a living; I could never (intentionally) do anything to harm one or attack one. Another reason is that I realize that the patients whose stories are being exploited by Eric Merola and Stanislaw Burzynski genuinely believe that Stanislaw Burzynski is the man who saved their lives or the lives of their loved ones. Moreover they genuinely believe that Burzynski is the only person who could have saved them. It is honestly how they see skeptics: As evil people trying to keep the Great Man from doing his work and saving lives. Why? Does it matter? Either we’re in the pay of big pharma, we can’t stand having our paradigms “challenged” by Burzynski, or we just plain enjoy watching cancer patients die. At least, the first two are dominant reasons frequently cited, and the last one is only a slight exaggeration, if exaggeration it even is at all. I also note that this refusal to “fight fire with fire,” as I sometimes do with quacks, pseudoscientists, and cranks, has in essence tied one arm behind my back and left me at a huge disadvantage, as certain Burzynski patients can say anything they want about me (one on Twitter has called other skeptics and me “fascists” and “stormtroopers”), and they know I just have to take it.
However, I do not have to take their misinformation and let it go unanswered. That, I do answer, but not in a way that attacks patients. For example, on April 27, there was a screening of Eric Merola’s latest hagiography of a “documentary” about Burzynski, Burzynski II:Electric Boogaloo, or whatever he calls it, at the Newport Beach Film Festival, followed by a Q&A, as Merola had done in Toronto and San Luis Obispo before. As was the case before, Merola and a bunch of Burzynski patients fielded questions from the audience and in general attacked what Merola called The Skeptics™, an apparently shadowy, evil cabal of pharma drones who, if Merola and Burzynski’s patients are to be believed, delight in crushing the hope of patients and cackle as they try to prevent them from reaching the only man in all the world who can save their lives, Stanislaw Burzynski. As was not the case before, there was a special “surprise” celebrity guest, a man represented as a former spokesperson for the American Cancer Society.
I’m referring to bodice-ripper model and sometime actor, Fabio Lanzoni. We saw a preview last week, and the misinformation was bad enough. This week, we get the full serving, and, between Fabio, Merola, and the rest of the panel the misinformation was staggering in its sheer mass, a black hole of pure nonsense from whose event horizon no rationality could escape, just as light cannot escape a black hole. Check it out, but be forewarned. It will require a strong stomach:
But, wait, Orac, you say. Fabio is is the family member of a cancer patient. His sister has ovarian cancer and clearly was reaching the end of the road. Aren’t you attacking Fabio? Not at all. Parts of the video are actually moving. Fabio clearly loves his sister, who developed ovarian cancer three and a half years ago. Clearly, he would go to great lengths to save her—and already has, having brought her to the Burzynski Clinic. Yet, whatever sympathy I might feel for Fabio and his pain right now, the fact remains that his understanding of science is…substandard, bizarre, even. And that’s putting it mildly. It would be one thing if he kept his misinformed beliefs about cancer to himself, but he doesn’t. He has gone from being a spokesperson for evidence-based cancer care (the American Cancer Society) to actively promoting a man whose treatment is unproven, whose clinic and research institute play fast and loose with human subjects protections, and who charges patients exorbitant sums of money to be on clinical trials.
For instance, Fabio repeats his line from the preview about radiation causing cancer, which I discussed before, even repeating his particularly despicable line, “Just ask the Japanese about radiation and cancer if you don’t believe me.” He repeats his line about there only being “chemo, radiation, and surgery,” and adds to it his recounting of his telling his sister never to undergo radiation. He even uses the outright false fear mongering claim that “chemotherapy kills far more people than cancer” and that it will “kill you faster than cancer.” One trope that Fabio enlists is the claim that chemotherapy is a “70 year old technology,” in which he’s clearly trying to frame it as being as obsolete as a 70 year old computer or a 70 year old car (the latter of which he explicitly used as an example). The further implication is that Burzynski is the future, the latest technology. He’s the iPhone 5 or the Galaxy S4 compared to chemotherapy being one of the brick-like phones from the 1990s. I must admit, this is a new one on me, but the answer, however, to the question of why we continue to use a 70 year old technology is easy: We use it because it still works when used properly. After all, would Fabio question the use of aspirin, which is way more than 70 years old? Would he question the use of appendectomy to treat appendicitis, an operation that dates back to the 1700s and is still the standard of care? Until you invent something better, you use what works.
Fabio, sadly, is too blinded by false hope to see through Burzynski’s B.S. and realize that he has not invented anything better than chemotherapy, his claims otherwise notwithstanding. In fact, Burzynski’s just invented another one, because antineoplastons are chemotherapy. No, worse than that. He’s just happened to appropriate one. The key antineoplastons have been intermittently studied for their efficacy against cancer since the 1950s. That’s right. Burzynski’s antineoplastons are at least 55 year-old “technologies”! Moreover, the chemotherapies he uses in his cocktails of “personalized, gene-targeted cancer therapies” are also “70 year old technology.”
Featuring prominently is a horror story about Fabio’s sister, who was diagnosed with ovarian cancer. Briefly, she apparently had an ovarian cyst that was not identified preoperatively as cancer and underwent surgery to remove her ovaries and uterus. A while later, she developed a recurrence, leading to surgery to resect a “three foot piece of bowel.” Clearly, she had developed a bowel obstruction. At one point, Fabio recounts a story where his sister had started a special diet at his urging. Around the same time she underwent chemotherapy. Fabio contemptuously tells how a doctor told his sister that diet didn’t matter and that she should eat whatever she likes. When her tumor markers plummeted, a doctor told her that the “chemo’s working.” Fabio, of course, attributed the decline to the special diet. Then, when his sister started eating whatever she wanted and recurred, Fabio blamed it on that. Yes, Fabio confuses correlation and causation. He also goes on and on about how she got chemotherapy that is for “sarcoma.” I tried to figure out what he was talking about. (I’m not a gynecologic oncologist.) Now, cisplatin-based treatments are the standard of care for first line treatment of ovarian cancer, but there are drugs used for salvage therapy. One of them is ifosfamide, which is also used for sarcoma. So is gemcitabine sometimes (geez, that’s chemotherapy for pancreatic cancer).
One can’t help but mention that Burzynski himself uses chemotherapies all the time designed for other tumor types against brain cancer and other cancers for which they are not approved. He calls it “personalized, gene-targeted cancer therapy.”
Although Fabio dominated the Q&A, a lot of the usual suspects were there again, as before. There was Tori Moreno, who hardly said anything during the entire Q&A, although her father said many of the same sorts of things that he said last time, and multiple panelists pointed to her as proof that Burzynski cures cancer. So were the Siegels, Steve and Mary Jo (although Mary Jo didn’t say much of anything—in fact she said even less than she said last time). Predictably, Steve Siegel went through his now familiar routine of claiming that Burzynski has published two to three papers a year for many years. Maybe he has, but if he has they’re not in PubMed, at least not that many since 2006, and a lot of them are in crappy, bottom-feeding journals or, even worse, in alternative medicine journals. Nor, as I have pointed out time and time again, has Burzynski published complete results of any of his phase 2 clinical trials (of which there are over 60). In any case, as I’ve explained before in detail, it is not at all clear that Burzynski saved the lives of Mary Jo Siegel or Tori Moreno.
Then there was Sgt. Ric Schiff, whom we first met a year and a half ago in the first Burzynski movie, a police officer whose daughter was treated by Burzynski but died. One can’t help but feel sorrow for his loss, as no one should have to see the death of a child. However, in the years since his daughter died in the 1990s, Schiff has become a regular promoter of Burzynski and his clinic, because, although his daughter did not survive and, in all fairness, almost certainly no one could have saved her, he doesn’t blame her death on Burzynski. He blames it on chemotherapy and radiation. and repeatedly tells audiences how, as a cop, he can spot fraud a mile away, but finds no fraud in Burzynski. It’s a bizarre appeal to his authority as a police officer, and an irrelevant one. His skill at spotting run-of-the-mill frauds does not magically give him the ability to judge whether a medical intervention is safe and efficacious or not or to weigh the science on cancer chemotherapy. The other thing Sgt. Schiff likes to do is to insinuate that skeptics are afraid to engage with him by claiming that every time he sees his name mentioned in a skeptical post about Burzynski he e-mails the skeptic and then bragging that none of them have ever responded to him. Interestingly, I asked around among skeptics who blog about Burzynski and, to a person, they all said that Schiff had never e-mailed them. Maybe he’ll contact me. My e-mail address for this blog is firstname.lastname@example.org, and if he wants to e-mail me under my real name I’m sure he can easily find it.
Then there was Lt. Col. James Treadwell (ret.), who, it is claimed, was cured of glioblastoma multiforme by Burzynski. Oddly enough, he said very little (or what he did say was edited out); so I won’t discuss him. At some point I might have to examine his case, because it’s one I haven’t looked at in detail before and he pops up from time to time promoting Burzynski.
Last of all, there was another newcomer besides Fabio Lanzoni, a patient named Sheila Herron. She is a woman who attributes her survival from metastatic triple negative breast cancer to Burzynski and recently has taken up engaging skeptics on Twitter. Unfortunately, she also has a penchant for insulting them and even pulling a Godwin gambit. Indeed, on one occasion, she even called skeptics (myself included) “stormtroopers” and “fascists,” all the while equating criticism of Burzynski with attacking patients. None of this is surprising. As I’ve said before, it’s really how a lot of Burzynski patients see us. It’s also, as I’ve noted before, how antivaccinationists see us as well. In any case, I don’t find her story as much of a slam-dunk piece of evidence that Burzynski can cure triple negative breast cancer, but that might be fodder for another post. Suffice to say, I think that surgery probably cured her, but that’s all I’ll say for now.
Finally, running throughout the entire panel was an intense hatred for skeptics. The hostility in the room must have been palpable for one skeptic, Bruce Gleason, who entered the lions’ den. Unfortunately, he screwed up. Big time. He got up (see around 16:10) and said how he had been convinced and that he would now recommend Merola’s film to the 1,000 members of his Orange County skeptic organization. He also tried to distance himself from “those” skeptics apparently portrayed in the film. It was, I hate to say, a rather nauseating performance. Fortunately for Gleason and greatly to his credit, he soon realized his error and three days later wrote a post admitting his mistake, thus mostly redeeming himself. As soon as a couple of skeptics calmly explained things to Gleason, he realized his error, something I suspect that Merola will never do. Merola, not surprisingly, was completely intellectually dishonest and never mentioned this “recantation” of his “conversion” in the video. Instead, he left Gleason’s appearance in the video uncommented upon.
The last 15 minutes of the film had a lot more hostility towards skeptics, beginning with Fabio saying this:
You know, if you are still skeptical, in my book you are ignorant, because, I’m telling you, what’s count is action.
Why? Well, in what is perhaps the most amusing exaggeration, a talking point no doubt fed straight from Stanislaw Burzynski to Eric Merola to Fabio Lanzoni, Fabio declares that Burzynski submitted “two and a half million pages” of clinical trials to the FDA and demands, “What more do they want of him?” Well, some real science indicating that antineoplastons have significant anti-tumor activity against the cancers tested, as well as full reports of the results of actual clinical trials showing outcomes data would be nice.
Later, Fabio lambastes skeptics some more:
If the FDA couldn’t find this much on this guy, you think just a regular skeptic’s going to find something? And plus, all the skeptics out there. Who they are? Probably people —I tell you, it doesn’t take a genius to figure out—or they’re people being paid by the pharmaceutical industry. Or they are people with no life. So my advice to them: Get a life. You know. Get a life. Dr. Burzynski is busy saving lives. Don’t. Waste. Any. More. Of. His. Time.
Yes, he really said that and really did emphasize the last sentence. Go to 38:20 if you don’t believe me and see it for yourself. Seeing Fabio’s demeanor and hearing his intonations will make you appreciate that what he said was far more insulting and offensive than mere words typed on a blog can adequately convey. So, in one brief paragraph, we have Fabio using the pharma shill gambit, a blatant use of the logical fallacy known as poisoning the well, along with just plain insults, in which he portrays skeptics not-so-subtly as basement dwelling young adults who aren’t married, don’t have any children, and are basically, unlike the apparent magnificence that is Fabio, geeks, nerds, dorks, pointy-headed science types. In brief, Fabio played a stereotypical jock dismissing intellectuals as losers who don’t understand the real world. Well, guess what? Even if all of that were true, it wouldn’t invalidate the arguments against Burzynski. I suppose I should be grateful to some extent, though, that Fabio restrained himself from likening Burzynski patients and families to rape victims being told they have to rally for stronger laws against rape, an analogy that Steve Siegel used (at around 45:45). Oh, sure, he apologizes for the poor analogy, but then he goes and uses the rape analogy analogy anyway. That analogy isn’t just a poor analogy; it’s highly offensive. A few minutes later (48:45), Siegel says:
We have been under such pressure from the skeptics, and patients are literally losing time, not going to see Burzynski, wasting time. Children are not getting to see him. You can join us on Twitter @BurzynskiSaves, where a number of us are speaking back to the skeptics, because there’s a lot of negativity up there.
That’s right. According to Steve Siegel, skeptics are killing cancer patients and babies! So, I guess that means we must be a double evil: Wasting The Great Man’s time and forcing him to swat at fleas and at the same time killing patients. Yes, this is the message that Merola is promoting through these Burzynski patients. It’s utterly despicable, of course, a tactic compared (quite appropriately, I think) to using cancer patients as human shields against criticism. As for the @BurzynskiSaves Twitter handle, that appears to be a “Hail Mary” pass to draw attention away from skeptic suspicions, based on some rather intemperate and ill-considered Tweets, that @BurzynskiSaves was in the past run by a rather high-placed employee of the Burzynski Clinic.
The Q&A ends with a lot of grandiose fantasies: That the movement is going to be so huge that it will be on the scale of what Gandhi and Martin Luther King achieved; that it will be bigger than the civil rights movement of the 1960s, the HIV/AIDS cure movement of the 1980s, and the like. Meanwhile, standing against this brave maverick doctor is the FDA, which is compared unfavorably with the mafia. Again, I suppose I should be grateful that Merola and crew didn’t explicitly pull a Godwin, but the implication was definitely there when he talked about the FDA showing up at the Burzynski Clinic in January for its most recent inspection. As I said, all grandiose, and not particularly rooted in reality. Ric Schiff tells a tale of a parent being told by Nancy Pelosi’s office that Burzynski was a charlatan. He claimed to have intervened and persuaded Nancy Pelosi about how great Burzynski supposedly is to the point that, according to Schiff, Pelosi is now asking how she can help. Whether the story is as advertised or not, I don’t know. It could be like Merola’s telling a story about David Axelrod having seen his first movie and speculated that it could destroy the pharmaceutical industry (one notes that he either didn’t tell this story again in this Q&A or edited it out), or it could be true. Maybe a letter or call to Nancy Pelosi’s office would tell us what her position on Stanislaw Burzynski is now, particularly if it came from a constituent.
All of this tells us skeptics: Our job is not done. As was discussed in the first Q&A session, Burzynski followers plan on trying to make their influence known at the federal level to try to “rein in” the FDA and get antineoplastons approved by fast track. It’s an effort that will probably fail, largely because Burzynski’s followers are relatively few and made up of mostly cranks. Indeed, consistent with the crank nature of the movement, Fabio even repeatedly issued challenges for a debate on live television with him and Burzynski on one side and a skeptics or skeptics on the other side, a favored crank ploy that I wrote about just a couple of weeks ago, when antivaccinationist Andrew Wakefield used it. Let me tell you that it was a challenge that almost made me think about violating my general personal rule that I don’t debate cranks. In any case, pro-science advocates and patient protection advocates can’t be too complacent, because the sorts of stories used and spun so cynically by a propagandist like Eric Merola are stories that lawmakers, not informed of the background and lack fo science, can find compelling. Lawmakers also don’t know that getting fast track approval for antineoplastons is part of an explicit plan by Burzynski to get approval and then intentionally market antineoplastons off label, something most lawmakers would not look favorably upon if a drug company did it.
In the end, Merola makes it clear that the propaganda war will continue. Fortunately, it’s also clear from the Q&A that the Burzynski Clinic is hurting as well. Investigated by the FDA, its antineoplaston profit center on hold, one notes a rather desperate air about the entire affair, up to and including Eric Merola’s and Greg Burzynski’s (or, as I like to call the latter of the two, Mini-B) trotting out Fabio as the celebrity story that’s going to change everything. Meanwhile, the Burzynski Clinic continues to use cancer patients as human shields.