Believe it or not, I’m about to say the one and only good thing I will say about Stanislaw Burzynski in this post. After all, I was always taught to find the good in my opponents, no matter how vile I find them. Burzynski, for instance, has been peddling a cure for brain cancer (and other cancers) that he claims to have discovered in the blood and urine in the 1970s. Despite there being no convincing evidence of antitumor activity due to these peptides, which he dubbed antineoplastons, he has managed to win battle after battle with the FDA and the Texas Medical Board and to continue to prey upon desperate families of patients dying of brain cancer. So here’s my one and only node to Stanislaw Burzynski. In the interview that I’m about to discuss, the host, Patrick Timpone, asked Burzynski about Tullio Simoncini and whether he thought there was anything to his cancer treatment. If you recall, Simoncini claims that cancer is a fungus and that sodium bicarbonate is the cure for cancer. I’ve dissected his idiotic claims before. Burzynski rejected it with that characteristic contempt he is so good at demonstrating, with a “No, no, no, I don’t think that would have a chance.”
Very good. That much, at least, Burzynski and I agree on about cancer. Simoncini is too loony even for Stanislaw Burzynski. Will small miracles never cease? Unfortunately, credulous stories about Burzynski patients definitely seem never to cease, for example Saving McKenzie Lowe: How You Can Help by Carol Robidoux and Grandfather goes to Washington
to try and save ill Hudson granddaughter by April Guilmet. Both of these credulous journalists need to listen to an interview by Burzynski and his minions to see just how conspiratorial and full of hate they are.
So what is this interview I’m talking about? Well, the Burzynski propaganda machine, even as diminished and battered as it is in the wake of the USA TODAY report by Liz Szabo in November, still exists and has been on the road. To fire it up for the new year, Burzynski appeared on an Internet radio show hosted by the perfect host to interview him, a man so credulous, so gullible (or perhaps clever, depending on how you view his promotion of all manner of quackery on his website), so full of magical thinking that during the interview his nose was planted so far up Burzynski’s rectum that even pushing a colonoscope up to Burzynski’s ileum might not have located it. Patrick Timpone was just that credulous in his January 28 interview with Burzynski and minions.
Joining Burzynski were some of the usual suspects: Eric Merola, Burzynski’s propagandist, the man who made two hagiographies of Stanislaw Burzynski (part 1 and part 2) painting him as a brave maverick doctor and the only doctor who can cure certain types of brain tumors; Ric Schiff, a San Francisco police officer who believes that Burzynski saved his little girl Crystin from a brain tumor but that conventional radiation therapy and chemotherapy killed her; Mary Jo Siegel, whom we’ve met before, a woman who thinks that Burzynski saved her from non-Hodgkin’s lymphoma; and Donna Navarro, a woman whose son with a brain tumor died from apparently treatment-related causes back in 2001, the result of which was her participation in a movie known as Cut, Poison, Burn. I haven’t really encountered her, but I’ve been meaning to watch the movie, which has been available online for a long time now. Maybe this will finally tweak me to do it.
In the meantime, I was curious what the Burzynski machine was up to. So I listened to the interviews, which encompassed nearly two and a half hours, so that you don’t have to. Or you might want to. I don’t know. As I sat in my office working on a grant earlier today, in the background I heard Burzynski’s soothing Dracula-like voice and then the voices of his acolytes, all of whose voices have become unfortunately familiar. A lot of it I’ve heard before. Some of it I haven’t. I’ll try to hit the high points.
The first thing that became apparent to me listening to this radio interview is just how much Burzynski hates skeptics. He started out all pleasant and smarmy, telling Timpone to “ask me questions,” and rapidly let his contempt become painfully obvious. Before the eight minute mark arrived, he had started a tirade where he refers to an “army of hooligans” who are “funded by big pharma” to orchestrate a “smear campaign” and who are “smearing us mercilessly everywhere.” Yes, that’s us skeptics. It actually rather warms the cockles of my heart to know that Stash cares about us enough to call us “the army of crooks called skeptics.” It tells me we’ve been effective. I got a particularly warm, fuzzy feeling inside when Burzynski went all Godwin on us and said:
They learned form Nazis. They learned from Mr. Goebbels before World War II and are using the same tactics. They smear us at every step. They lie.
Then, typical of Stash, he makes the grandiose claim that by the end of the year we will all be gone. Why? It’s not clear, but he implies that something will happen this year that will vindicate him. I can hardly wait. I won’t bore you (too much, anyway) with the rest of the interview, because there’s very little there that I haven’t heard before. He tells a highly biased story of how he discovered antineoplastons. Then there’s the same nonsense about the “Japanese trials” that I dissected when I reviewed the second Burzynski movie by Eric Merola. Interestingly, he lets it be known that these trials were funded by an unnamed wealthy donor, not by any sort of competitive grant funding. Then there’s the same claim that he has been permitted to undertake phase III clinical trials of antineoplastons. Actually, as has been explained so many times in so many places that phase III trial never opened. It never accrued a single patient, despite being opened in December 2010. If you look for it on the ClinicalTrials.gov website, you’ll see that its status is now listed as “This study has been withdrawn prior to enrollment,” which means the study was halted prematurely, prior to enrollment of first participant. The study was last updated September 16, 2013, which is presumably when it was withdrawn. Basically, here Burzynski is either deluded or lying. Take your pick.
Other tunes on the Burzynski greatest hits album came fast and furious. The phase II trials are finished. (Then why haven’t the final results of any of them been published?) According to Burzynski, hundreds of patients with inoperable brain tumors have been saved by antineoplastons. (If true, then that should be easy to prove. So why hasn’t Burzynski proven it?) Antineoplastons are available in Japan and Australia, where all a doctor has to do is to call up the Japanese or Australian equivalent of the FDA and ask for a compassionate use exemption and you’ll get it. (I’m going to have to look into this one sometime.) Burzynski rants about the FDA requiring that patients undergo the standard of care for brain tumors and failing it before they can be enrolled on antineoplastons. This, of course, is standard practice because it would be unethical to go straight to an experimental treatment without first having tried effective medication, even if its effectiveness leaves something to be desired. Burzynski claims that his results show that patients who get antineoplastons first do much better than those who receive them after chemotherapy, a claim that, again, if it were so obviously true as Burzynski claims should be easy to demonstrate from his data. He hasn’t, which is why I wonder if Burzynski even knows what the term “selection bias” means. Of course patients who have tumors that haven’t responded to chemotherapy will appear to do worse.
Most amusing of all (to me), Burzynski also claims that brain tumors “shrink away” within weeks. Little does he know that that claim looks more than ever to me like pseudoprogression, where inflammation from previous treatment, particularly radiation therapy, mimics tumor progression, which then naturally regresses over the course of—you guessed it!—four to eight weeks. More than ever, I’m convinced that many of Burzynski’s “success stories” are him mistaking the regression of pseudoprogression for a real antitumor effect due to antineoplastons.
But, hey, according to Burzynski, we have “totalitarian medicine” and the system in the United States is “like the Nazi system of medicine,” with everybody treated the same same way “to the glory of pharmaceutical industry and to the glory of the government, which tells them what to do.”
Stash sure does like his Nazi analogies. I will give him credit, though, for an insufferable sense of how to tell everyone that they are peons and he is an Important Man. At the end of his segment, he says he has to leave because he has important people waiting for him who flew halfway around the world to see him. Nice.
Eric Merola showed up next, and I don’t really have a lot of stomach for going through his nonsense except briefly. I’ve heard it all before and probably related most of it to you before. The only difference is that his “Zeitgeist” self came out more, and he was more explicitly conspiratorial than I’ve heard him before. To him, the assault on Burzynski is like the IRS investigating Tea Party-affiliated groups. Meanwhile, all the old tropes keep coming, with Burzynski mentioning Nicholas Patronas, a high ranking radiologist at the NIH who wrote a letter of support for Burzynski 20 years ago. Too bad Burzynski seems unaware that Liz Szabo tried to contact Dr. Patronas and described their interaction thusly:
As I looked at Burzynski’s endorsements, they fell through, either because they couldn’t be verified or because people apparently now don’t want to publicly be associated with Burzynski’s claims. His supporters like to quote some early supporters at NIH. For example, Dr. Dieter Schellinger. He is now elderly and said he has no memory of Burzynski. Dr. Nicholas Patronas is still at NIH, but did everything he could to avoid being quoted about Burzynski, and basically said any of his earlier comments were about preliminary work from the 1990s, and not meant to assess efficacy.
None of this stopped a Merola greatest hit parade, including claims that Burzynski is “unfair competition” and “they” had to eliminate them. (Given that Burzynski has been doing what he’s doing for 37 years, “they” sure have done a crappy job. He did, however, try out a new excuse, mainly that the reason that the phase III trial was withdrawn was that Burzynski hadn’t started it, despite having approached 300 children’s hospitals and been told “no,” the implication being that “they” closed ranks and refused to work with Burzynski. Of course, it’s not implausible that Burzynski had to close the trial because he had failed to enroll a single patient in nearly three years, and it’s certainly plausible that no reputable pediatric oncologist wanted to get within a mile of Burzynski, but none of it was a conspiracy. It does amuse me, however, Merola can’t even be bothered to keep his story consistent with what Burzynski says. Remember, Burzynski mentioned nothing about the phase III trial having been closed and implied that it would happen if only he could get the money.
Up next was Ric Schiff, who told his story yet again. I do feel obligated to mention here that what Schiff is doing is a massive conflict of interest that was undisclosed. Nowhere was it mentioned in the interview that in July 2013 Schiff was elected to the board of directors of the Burzynski Research Institute. So not only is there an undisclosed conflict of interest here, but one wonders how legal his involvement with the lobbying organization he appears to be heading up, the ANP Coalition, which I discussed last week.
I’ve always found his story a bit confusing. His daughter Crystin, diagnosed with a very rare malignant rhabdoid received chemotherapy and radiation, responded, recurred, and was treated with antineoplastons. Tragically, Crystin ultimately died. Schiff keeps saying that she was cancer-free when she died and that the chemotherapy and radiation killed her, but interestingly, unlike so many other patients featured in Merola’s movie, no medical records were included, nor was the autopsy report. Also interestingly, Ric Schiff states that the doctor who treated Crystin had testified in a deposition for one of Burzynski’s trials that he had cured two of his patients. This appears to be in marked contrast to what a legal record shows, namely that the doctor had testified against Burzynski in a previous trial. I’m sure there’s an explanation, just as there’s an explanation for Ric Schiff’s claim that he’s met “hundreds” of patients saved by Burzynski. Again, if that’s true, where are these patients, and why can’t Burzynski demonstrate this in clinical trials?
In any case, Schiff and later Mary Jo Siegel (whose case I’ve discussed before) spent a lot of time talking about the ANP Coalition, the group whose mission is to promote antineoplastons and lobby Congress to pressure the FDA to allow clinical trials to begin again. In that, they really are trying to recreate the 1990s playbook, and why not? It worked so spectacularly last time, when Congressional pressure led the FDA to fold and allow Burzynski to open 72 phase II clinical trials, about which Burzynski’s lawyer Richard Jaffe so famously (now) wrote:
So we decided to hit the FDA with everything at the same time. All of his current patients would be covered in a single clinical trial which Burzynski called “CAN-1.” As far as clinical trials go, it was a joke. Clinical trials are supposed to be designed to test the safety or efficacy of a drug for a disease. It is almost always the case that clinical trials treat one disease.
The CAN-1 protocol had almost two hundred patients in it and there were at least a dozen different types of cancers being treated. And since all the patients were already on treatment, there could not be any possibility of meaningful data coming out of the so-called clinical trial. It was all an artifice, a vehicle we and the FDA created to legally give the patients Burzynski’s treatment. The FDA wanted all of Burzynski’s patients to be on an IND, so that’s what we did.
CAN-1 allowed Burzynski to treat all his existing patients. That solved the patients’ problems, but not the clinic’s. A cancer clinic cannot survive on existing patients. It needs a constant flow of new patients. So in addition to getting the CAN-1 trial approved, we had to make sure Burzynski could treat new patients. Mindful that he would likely only get one chance to get them approved, Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future…Miracle of miracles, all of Burzynski’s patients were now on FDA-approved clinical trials, and he would be able to treat almost any patient he would want to treat!
I know I’ve quoted that passage before, but it can’t be repeated too many times, as far as I’m concerned, particularly in the context of reporting on what Burzynski minions, sycophants, toadies, and lackeys are saying. Also, every time Ric Schiff shows up, I’ll point out that he is on the Burzynski Research Institute board of directors, because he never appears to see fit to mention this little bit of information when he’s out shilling for Burzynski. I do wonder, however, if he’s happy that Mary Jo Siegel mentioned that the lobbyist the ANP Coalition hired, Antonio C. Martinez II, costs $10,000 a month. One wonders where the money for that is coming from, one does, because it doesn’t sound as though the ANP Coalition itself is bringing in much money.
Fed up with unreturned calls to the FDA, Frank LaFountain drove himself to Washington, D.C., on Tuesday in a last-ditch attempt to save the life of his 12-year-old granddaughter, McKenzie Lowe.
Diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG), the Hudson sixth-grader has already outlived the average life expectancy for children suffering from the rare condition.
This past November, about a year after McKenzie’s diagnosis, her family began the process of seeking federal permission to pursue a controversial and experimental treatment for the little girl’s rapidly growing brain tumor after several unsuccessful rounds of chemotherapy and radiation.
The Lowe family is still holding out hope that McKenzie can obtain antineoplaston treatment at a Texas clinic.
The correspondent, April Guilmet, goes on to write about how New Hampshire senators, moved by McKenzie’s plight, have written letters to the FDA on her behalf. Again, I understand the human impulse to help children like McKenzie Lowe. Only a heartless bastard could fail to be moved by her story. But stories like Guilmet’s do not help McKenzie or any other patient with brain cancer, just as the stories being written about Elisha Cohen do not help him. She also credulously swallows Ric Schiff’s version of events regarding his daughter and, worse, appears to completely buy into the narrative being promoted by Burzynski’s propagandists that Burzynski is McKenzie’s only hope—and the only hope for another child with a brain tumor named Braiden Norton. In fact, the latter case is even more disturbing, given this:
Doctors at Boston Children’s Hospital performed surgery to remove most of the tumor, but gave the boy a 50 percent chance of survival after the mass, located on Braiden’s brain stem, began to grow again.
Specialists at Dana Farber Cancer Center recommended a yearlong course of chemotherapy but after further research the Nortons knew they wanted to find a gentler alternative.
“What they were going to give to my kid was a poisonous joke,” Phil Norton said.
Three days before Braiden’s first scheduled chemotherapy treatment, the Nortons discovered the Burzynski Clinic. Though doctors at Dana Farber advised against it, the family was soon on a plane bound for Texas.
So this case is more akin to that of Sarah Hershberger, in that the parents appear to be throwing away a 50% chance of long term survival for woo. As we have seen so many times, Burzynski claims that there is “no trace” of the tumor, but given his record interpreting brain imaging scans (not good). Also not mentioned is that pylocytic astrocytoma, the tumor type that Braiden has, is generally considered a benign tumor and tends to be slow growing. According to the parents’ website, Braiden’s tumor was a “low grade, benign, Pylocyic Astrocytoma.” It also shows that Braiden suffered at least one catheter related infection due to the Portacath used to administer the antineoplastons.
I may have to look into this anecdote in more detail.
Meanwhile, people like Carol Robidoux are writing similarly credulous articles like Saving McKenzie Lowe: How You Can Help, promoting the Burzynski line. Once again, as I’ve described it, Burzynski is using patients as a weapon and a shield against the FDA. Unfortunately for him, he can’t see to keep himself and his minions from letting the conspiratorial crazy flow when the audience is for alt-med “health freedom” activists, perhaps thinking that the mainstream outlets that he depends on for stories like those written by Robidoux and Guilmet to promote his cause and use those same patients to tug at the heartstrings of readers and legislators like the two senators from New Hampshire. I suggest that everyone, particularly Robidoux and Guilmet, listen to Burzynski’s interview and the interviews with his minions done by Timpone and read Liz Szabo’s excellent story on Burzynski. Then resolve to show a little skepticism before writing another story on McKenzie Lowe or other Burzynski patients. You are not helping them, as much as you think you are. I understand the impulse to help a suffering child, but your energies will not help any of these children but will help Burzynski in his war against the FDA.