Stanislaw Burzynski’s counteroffensive against the FDA and Texas Medical Board continues, part 2

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.

Oops.

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.

Clearly, in the wake of the USA TODAY story, the level of paranoia is escalating. In fact, I recommend publicizing these interviews to the people who write stories like this one:

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.

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I forgot if I ever mentioned that I have an article out in the current episode of Skeptical Inquirer about Stanislaw Burzynski. I call it a "primer for skeptics," because that's what it is. So, if you subscribe to SI (Skeptical Inquirer, not Sports Illustrated), read. If not, get thee to a…
R.I.P., McKenzie Lowe. Unfortunately, Stanislaw Burzynski was no more able to save you than anyone else, his claims of great success treating pediatric brain tumors notwithstanding: HUDSON — Thirteen-year-old Hudson resident McKenzie Lowe died Friday evening after a 2-year-battle against an…
Three weeks ago, USA TODAY published an expose of the Burzynski Clinic by Liz Szabo that was devastating in its scope and detail. Early on, Stanislaw Burzynski and his minions tried to do some damage control, with hilarious results given how inept and unconvincing his excuses were for all the…
Here we go again. Two months ago, I noted that Dr. Stanislaw Burzynski, the Polish expatriate physician who started out as a legitimate medical researcher and then in the late 1970s took a turn away from science-based medicine and towards being a "brave maverick doctor" through his discovery in…

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.

Orac is generous in thinking that Burzynski is "mistaken".

@JD - interesting that the two main points in the anti-vax section contradict each other....1) that parents can't sue vaccine manufacturers for damages & 2) that over $2Billion dollars have been awarded as compensation

Another example of how the anti-vax brigade can't keep their stories straight.

Orac said:
"After all, I was always taught to find the good in my opponents, no matter how vile I find them".

Oh, I wasn't.

OT- but are pseudo-scientific posturings of self-centred, money-hungry wankers in TEXAS ever TRULY OT @ RI?

Today Mikey reveals his master plan in a long-ish video at Natural News:
- he has discovered that 'healthy' foods contain ((shudder)) heavy metals
- these contaminants cause many health issues- esp those that affect cognition, emotions and mental health
- this is what "dumbed down" modern society
- if you get 'clear' like he did, you will begin to comprehend the dire straits in which the world finds itself.
- there is massive debt
- we should make drugs legal so gangs don't take over
- clean foods will save the world

Follow Mikey and you too can triumph over brain fog

By Denice Walter (not verified) on 30 Jan 2014 #permalink

@DW

Is Mikey an AGW denialist?

Do you think any of the journalists* that have written these credulous articles can be turned around by evidence of the crazy conspiracy statements emanating from the Burzinski camp and the evidence that his "treatment" is ineffective? Or are they too heavily invested and the cost of admitted they were fooled is too high?

*I am beginning to think that the number of actual journalists (as opposed to credulous copy-paste churnalists) in North America is in the low double digits.

By Militant Agnostic (not verified) on 30 Jan 2014 #permalink

@ Militant Agnostic:

Mike doesn't buy AGW but hopes that you'll buy his fearmongering about other subjects:
contaminated food, evil doctors, gang warfare, a police state and economic Ragnarok- coming soon to a location near YOU..

About journalists:
I don't know but I think that our constant re-iteration of the truly unfettered madness that exists in woo might be a way to get the brighter ones to walk away.

As I always say:
woo needs conspiracy theories to explain why it is not accepted as the status quo since it is SO advanced and effective.
So we can hit them with both sides of crazy.

By Denice Walter (not verified) on 30 Jan 2014 #permalink

The fact that "we will all be gone by the end of the year" because "something will happen this year that will vindicate [Burzynski]", causes one to reminisce about Mikey's big announcement on Jan. 6 (or was it 7) that--ahem--changed the way we think about science.

Burzynski seems to have a 37 year fantasy that indeed, oncology as we know it will by supplanted by him, soon.

Just prior to his Big News, Mikey wrote this for Natural News and Info Wars:

Historical deep freeze across North America proves global warming is getting worse, right?

By Denice Walter (not verified) on 30 Jan 2014 #permalink

@Denice,

I'd be tempted to reply if he has heard of the word homeostasis? It work for mother nature too.

Alain

Mr Woo thinks that reading about this man is making me too stressed. Sadly, I've also wandered into reading about other woo that is equally damaging/deadly and its results, so I don't think it is just Dr Burzynski.

I think reading the two articles trying to get help and support for the children depressed me even more? As long as he keeps doing the "maverick doctor" bit, there is a subset of the population that will be willing to believe that it's "the Man keeping the good guy down," rather than some man selling snake oil to some of the most desperate and frightened patients you can find.

I wonder if Dr Burzynski was originally inspired to look at urine because of the woo of urine therapy?

To him, the assault on Burzynski is like the IRS investigating Tea Party-affiliated groups.

Is Merola claiming that Burzynski's critics are, as alleged of the IRS auditors, attacking him for improper reasons, or is he claiming that the accusations against Burzynski are as truthful as the allegations that the IRS was specifically targeting Tea Party groups? In the IRS case, it turned out that people in the Cincinnati office were investigating groups on both ends of the political spectrum, progressive as well as Tea Party, to see whether they were engaging in political activities not allowed under the section of the Internal Revenue Code they were using to claim tax-exempt status. So it's a strange analogy for Merola to make to an audience that gets their news from sources other than Fox News.

By Eric Lund (not verified) on 30 Jan 2014 #permalink

1. Burzuynski is not being nice or even rational about science when he says that Simoncini's fungus-cancer idea doesn't have a chance of being true. He's just trying to discredit a competitor for the desperate woo dollar.

2. It's not a smear campaign when people are telling the truth about Burzynski's bad actions. It doesn't take a conspiracy for real medical doctors to tell their patients to avoid someone who was once and is being currently investigated by the FDA for fraud and killing patients.

3. Burzynski and his defenders do project their mistakes onto others, however, in that it takes a conspiracy (in the legal sense) to hide Burzynski's medical malpractice by altering records and submissions to the FDA.

they learned from Mr. Goebbels before World War II
That's Dr Goebbels to you, sonny.

brain tumors “shrink away” within weeks.
Burzynski sounds like he's promoting a new weight-loss drug. See those pounds melt away!

By herr doktor bimler (not verified) on 30 Jan 2014 #permalink

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.

She's also gotten in on the Hershberger action.

I'll go ahead and say it: Dr. Burzynski is a sociopath. So of COURSE he gets nasty when challenged--he's being thwarted. Be prepared for the wheels to come flying off this woo machine if the FDA and the Texas Medical Association shut him down.

Denice Walter @5:
So Mikey is now 'clear' by detoxing or whatever it is he has done - I always thought that to get 'clear'(TM) you had to go through round after expensive round of Scientology auditing.

@ Derek:

Aha! SOMEBODY understood my choice of words!

By Denice Walter (not verified) on 31 Jan 2014 #permalink

I'm one of the reporters that you referred to in this post, and I invite you to contact me, at your convenience. My email address is AGuilmet@newstote.com.
Kind regards,
April Guilmet

By April Guilmet (not verified) on 01 Feb 2014 #permalink

This fight with Dr. Burzinski is all about money. Surgeons, radiologists, and the makers of standard chemotherapy drugs want the public to believe that Dr. Burzinski is a quack selling a completely bogus treatment. There is a very good reason why attempts to shut Dr. Burzinski down have encountered so many thorny problems. The courts and others asked to shut him down don't want to deny life-saving treatment to anyone. It's true that antineoplastons have risks and some patients don't benefit at all. But others have indeed benefited regardless of what the so-called experts and powerful special interests want to believe.

By Kelly Clover (not verified) on 01 Feb 2014 #permalink

Kelly, let's say that you had $1million and you wanted to invest it. You look around and find a new product with an awful lot of publicity and personal recommendations. It seems too good to be true. How hasn't some big multinational taken this over by now? Then you find a lot of conspiracy theories around why this might not have happened. Would you then invest your money with no further investigation or would you dig a little deeper, look for evidence that this new product really does what it says? Real evidence?

By NumberWang (not verified) on 01 Feb 2014 #permalink

Hi Kelly,
I'm not a surgeon, radiologist, or in any way connected with Big Pharma (other than having benefitted from chemotherapy myself), and I'm certainly no expert or powerful special interest. I'm *just* a cancer patient, but I also want the public to understand that Burzynski is a NONcologist selling a completely bogus treatment.

Where, exactly, can we see evidence of these patients that Burzynski's treatment has supposedly helped? Of course I mean other than the few patients uses for advertising purposes and whose cases have been discussed previously.

What is your stake in all this? Why do you promote someone who has been shown to take vast amounts of money from lots of desperate cancer patients with absolute zero evidence of any effective/safe treatment for their illness?

Hi Kelly,
I'm not a surgeon, radiologist, or in any way connected with Big Pharma (other than having benefitted from chemotherapy myself), and I'm certainly no expert or powerful special interest. I'm *just* a cancer patient, but I also want the public to understand that Burzynski is a NONcologist selling a completely bogus treatment.

Where, exactly, can we see evidence of these patients that Burzynski's treatment has supposedly helped? Of course I mean other than the few patients uses for advertising purposes and whose cases have been discussed previously.

What is your stake in all this? Why do you promote someone who has been shown to take vast amounts of money from lots of desperate cancer patients with absolute zero evidence of any effective/safe treatment for their illness?

Hi Kelly,
I'm not a surgeon, radiologist, or in any way connected with Big Pharma (other than having benefitted from chemotherapy myself), and I'm certainly no expert or powerful special interest. I'm *just* a cancer patient, but I also want the public to understand that Burzynski is a NONcologist selling a completely bogus treatment.

Where, exactly, can we see evidence of these patients that Burzynski's treatment has supposedly helped? Of course I mean other than the few patients uses for advertising purposes and whose cases have been discussed previously.

What is your stake in all this? Why do you promote someone who has been shown to take vast amounts of money from lots of desperate cancer patients with absolute zero evidence of any effective/safe treatment for their illness?

Oops - apparently the DNS error I keep getting didn't prevent my posts from appearing - sorry for duplicates!

@Kelly Clover - if you have good, peer reveiewed, replicated evidence that Dr. Burzynski's treatments have better clinical outcomes than the current standard of care for any particular disease, please share. Thanks!

By Mephistopheles… (not verified) on 02 Feb 2014 #permalink

@MoB - I agree, if these Dr. B supporters have access to "super-secret" clinical trial information showing efficacy of his treatments, they should be sharing them with the world....I wonder why they aren't?

This fight with Dr. Burzinski is all about money. Surgeons, radiologists, and the makers of standard chemotherapy drugs want the public to believe that Dr. Burzinski is a quack selling a completely bogus treatment.

ORLY? Where are they? The only people I see "fighting" with Burzynski are a handful of folks who increasingly started to take notice of him around the time of the Marc A. Stephens debacle. The FDA, you may recall, has facilitated the operation of his money factory all these years. Do you think the TMB is in the pocket of "makers of standard chemotherapy drugs"? If so, why don't they provide the TMB with some competent lawyers?

On the other hand, Burzynski has long been a darling of the penny-stock pump 'n' dump crowd. Who's paying Merola's bills? It is well known who pays Burzynski's. "All about money," indeed. The mansion itself is a third of an acre.

For Dr. B, it is all about the money - always has been. He's set up his clinic so that all the profits are funneled to him by "charging" the clinic just enough for rent and expenses (and licensing his process) to make it look like the clinic either operates at a net-neutral or a small loss (for tax purposes).

All you need to do is read the clinic's SEC filings to see exactly how Dr. B operates....

All you need to do is read the clinic’s SEC filings to see exactly how Dr. B operates….

These are rather opaque unless one has an accountant to hand.

BTW, the Richert case against Burzynski and BC/BS is going to trial. The latter party is probably fine; Count Scamislaw, not so much. Does anyone know whether Quinlan was settled after the nonsuiting?

I just noticed this following disclaimer was recently added to Merola's film website. I wonder if there was any legal impetus, in light of all the recent events surrounding Burzynski, that prompted Merola to add this paragraph:

Disclaimer: This documentary film series is not affiliated with Dr. Stanislaw Burzynski MD, PhD, The Burzynski Clinic, or the Burzynski Research Institute, Inc. It is an independent film series produced by Eric Merola, and should not be misunderstood as an advertisement for the Burzynski Clinic. This film series and this web site is not intended to replace professional medical advice.

Not to be misunderstood as an advertisement?!! I almost spit my tea all over my keyboard and screen!

By Woo Fighter (not verified) on 04 Feb 2014 #permalink

I think while we are in the subject of discussing "scams", it's time to look at all those so-called "successes" in conventional treatment of most kinds of cancer. The fact is that virtually no real progress has been made in conventional treatment of most cancers in the past several decades, despite billions of dollars going to "research", and billions that have gone to pay for chemotherapy, surgery, radiation, all to put people through misery for the last months of their lives. Yes, there are a few cancers that can be successfully treated today -- non-hodgkins lymphoma, prostate, and arguably (though I believe questionably), breast cancer. But for most others, drastic and very expensive treatment yields rather poor responses. E.g. why is chemotherapy still considered "the best" way to treat pancreatic cancer, when the best outcome seems to be a 5% survival. That isn't an answer. It is reminiscent of a radio program I heard as a child, discussing bacteria transmitted in surgery: "The surgery was a success, but the patient died". It still rings in my ears today, but now I hear "The chemotherapy and radiation were a success, but the patient died"

It is enough to make me believe (like so many others), that many, if not most of those involved in providing conventional cancer treatments don't want to find out that there is, in fact, a better way of doing things. Maybe not simpler (as so many alternative scams are), but better. It's just going to take "thinking outside the box". And while we are at it, why isn't anyone looking at what is causing what appears to be an increase in some kinds of cancer in recent years? -- Particularly what appears to be an increase in "untreatable" cancers? Perhaps if we could figure that out, we could do more real prevention.

In short -- I believe there has to be a better way. Perhaps if there were not so much animosity towards considering any kind of "alternative" and all that energy going to suppress them, it might be possible to find some approaches that would really be effective. There are answers out there, but we don't seem to be capable of opening our minds to find them.

As the other "credulous" reporter referenced here, I just want to reinforce that the story I wrote was one of several written about a family taking desperate measures to save a child with cancer who had run out of "conventional" treatment options. They were well aware of the quackery charges against Dr. Burzynski, yet were willing to take a calculated risk. It is not my duty as a journalist to tell them they are making a mistake - although I did discuss with the grandfather what I had learned about Burzynski in researching it on background for the story. He knew it all, and had visited the clinic himself. For the poster of this blog to persist in calling me a "credulous" reporter in the context of this blog reinforces to me that he is unable to comprehend that sometimes the elements of a story are not what the story is actually about. I cannot and will not investigate Dr. Burzynski – it was out of my realm of expertise and resources, and has already been done by other investigative health and regional reporters; I will report why a New Hampshire family is feeling so desperate that they are willing to petition the FDA for an unproven and controversial treatment. There was nothing about what I wrote that added credulity to Dr. Burzynski or his method.

By Carol Robidoux (not verified) on 28 Apr 2014 #permalink

How can a choice be both desperate and calculated? I think desperate is more accurate. Further, conventional treatment includes supportive and palliative care. No, conventional treatments had not been exhausted. By no means is it a controversial treatment either. It is an ineffective treatment, and if, god forbid, you need to spend 10 minutes "investigating" Burzynski to realize that, it will be time well spent. Outside of your expertise? That's why reporters call experts. And maybe you don't have the resources to make a phone call, but then again, newsroom budgets are being squeezed, eh? You were sitting on a much more important, revealing, and sinister story and completely missed it. And you gave B free press. And how can you run things like "How you can help" and think that you aren't adding credibility to Burzynski? Is it helping to send someone into a quack's clutches? Take this:

"McKenzie's grandfather, Frank LaFountain, said the FDA has proof the controversial treatment, available through a clinic in Texas, has a 33 percent cure rate, versus that of conventional cancer treatment, which has a 0 percent cure rate for the kind of cancer McKenzie is up against."

Aaaand did you check this? A claim about a new treatment about an incurable cancer needs to be checked. Or did you just allow unsubstantiated conspiratorial bullshit to constitute the bulk of your article? Oh, wait, you just passed it on. How can you not be painted justly as a quack's dupe when you say:

"Watch the YouTube video, uploaded here, in which McKenzie and her grandfather tell their story. Then, go to change.org and sign the petition.

"Then, pass it on."

No, not misleading at all. I mean, other than your readers and, apparently, yourself.

I know. I'm shocked that Ms. Robidoux would think that readers who know something about Stanislaw Burzynski and antineoplastons should reasonably interpret her story as anything more than an advertorial for Burzynski, given how sympathetic it was for the family and how the "controversy" over his therapy was treated in such an obligatorily rote fashion, a mere afterthought tacked on because of the required "tell both sides" narrative in journalism. Sorry, I don't buy it. Ms. Robidoux basically transcribed Burzynski propaganda without checking any of it and blithely whisked over the issues with Burzynski as a "controversy" that the parents are "aware of." I mean, seriously. Her article was entitled "Saving McKenzie Lowe: How you can help," fed cryin' out loud.

I stand by my characterization of Ms. Robidoux as a credulous reporter.

@Orac - agreed. This wasn't even about offering a "balanced" view....which we know there are times when there is no balance (because one side is incredibly wrong, wrong, wrong), but in this case, we have a reporter who didn't even attempt to portray the real facts or present the idea that this isn't a "controversial" treatment, so much as it is a treatment that never been shown to be effective, ever!

Speaking as a former journalist, I want to defend Ms. Robidoux against the allegation that she's a credulous reporter.

Robidoux: " I cannot and will not investigate Dr. Burzynski – it was out of my realm of expertise and resources, and has already been done by other investigative health and regional reporters; I will report why a New Hampshire family is feeling so desperate that they are willing to petition the FDA for an unproven and controversial treatment."

There's nothing in her comments or story to prove that she's credulous and willing to take Burzynski entirely at face value. It is entirely possible that Ms. Robidoux is just lazy and irresponsible, which is a different matter entirely. It takes a certain amount of effort to do justice to a story, and perhaps Ms. Robidoux just didn't care to do her job properly.

Either way, of course, her story is a disservice to her readers.

By Dangerous Bacon (not verified) on 28 Apr 2014 #permalink

"There was nothing about what I wrote that added credulity to Dr. Burzynski or his method."

If you don't know the difference between credulity and credibility, you shouldn't be a reporter.

Speaking from more than 20 years' experience as a reporter, editor and journalism enabler, I can say with no heistation that Robidoux's self-serving prattle simply reinforces the massive journalism fail she and her editors committed. She sacrifices the family's financial resources for the sake of more eyeballs and click-throughs. Pathetic.

By Scottynuke (not verified) on 28 Apr 2014 #permalink

The charge that Ms Robidoux was credulous seems entirely fair to me. Her article showed no sign of wanting to get at the truth: she merely took Burzynski's PR at face value.

It's a shame that she seems to want to try to defend her mistake, rather than learning from it.

By Adam Jacobs (not verified) on 28 Apr 2014 #permalink

I think it makes it even worse that Ms. Robidoux acknowledges that she knew that Burzynski has been exposed as a charlatan and snake oil salesman and yet still wrote her credulous article, even encouraging people to sign that misleading petition and committed all the other journalistic sins that have been enumerated.

When the many issues in her article were brought to her attention, the only change (if I remember correctly) was to add a hyperlink to the USA Today article.over the existing text.

I do give her credit for actually responding to the criticism, however.

This is "churnalism", recycling press releases under the guise of reportage. It happens everywhere, but it is particularly dangerous in the health arena (and of course this is how the Daily Mail gets most of its health content).

It's not just lazy reporting, it's dangerously irresponsible and a dereliction of duty. If you're going to shill for a quack at least be aware that's what you are doing!

By Guy Chapman (not verified) on 29 Apr 2014 #permalink