Jan 14 2013
Dr. Stanislaw Burzynski’s antineoplastons versus patients
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30 Responses to “Dr. Stanislaw Burzynski’s antineoplastons versus patients”
Merola is a piece of work. His tweets as @burzynskimovie make it pretty plain that ad hominem is going to be the dominant theme of Burzynski II:Triumph des Antineoplastons. But there is a subtle change afoot: b
Burzynski now seems to be talking less about cures (which he doesn’t have) and more about confounding doctors’ estimates of life expectancy. I am sure that in Sean’s case the 6-24 months would have been presented as 6 and any survival beyond that presented as the Burzynski Miracle(TM). Of course we all know that survival prognoses are only estimates and are least accurate at first diagnosis.
This is truly sad. I agree and should be truly penalized. If you lie to a patient making him believe a tumor is regressing or has dissapeared you are fooling him into a position where it doesn’t take a real medicine to the problem. You are really putting its life into danger. Sometimes modern medicine can’t do much about it but in other cases…
Besides I agree that if I had very advanced cancer I would give a try to personalized medicine, but not neoplastcr$$p. Still, real personalized medicine if possible not just standard grouping.
I would like to remind everyone that we are raising money for St. Jude. I hate to think that we wouldn’t make our goal and hand this dude a reason to gloat. We just received a $2500 donation that was meant to inspire other skeptics to give. Go to crowdrise.com/fightchildhoodcancer/. I think if we make our goal and issue the entire $30K challenge, we have a better chance of getting sympathetic mainstream press!!! We need that desperately if we are going to make this better.
Bob
What is the Texas Medical Board waiting for? Can a group of skeptical doctors form some kind of association and get some answers?
I thought that the Irish TV station did a great job although they could have put the real doctor, who appeared close to the end, at the beginning and given him a bit more screen time. At no point, did they give any real credence to the clinic and instead focused on the family, which subtly conveyed that the clinic preys on peoples hopes.
A side note: What on earth was Sean drinking in the cup of horrible looking green stuff his father whipped up in the blender? I like kale as much as the next veggie fool, but I eat it as a food and can’t imagine slurping up quarts of the stuff in goo-form. Yuk. I can only imagine that the family are also (what’s the harm?) trying all sorts of “diet” interventions.
One other little thing: Is the mother American? She didn’t seem to speak Irish (who knew so many people still do?), and her accent sounded rather New York-ish. It’s also a shame that RN’s seem to be as woo-prone as anyone else, but then, she’s a mother first, perhaps. I’m not trying to be hard on parents who have to lose their children to horrible diseases, but wouldn’t realism and acceptance give the family more real quality time together than all the money and energy spent on chasing “miracles”?
OT, but I saw this article today and wasn’t surprised the offender was studying accupuncture and TCM:
http://www.wired.com/wiredscience/2013/01/worst-science-misdeeds-2012/?utm_source=dlvr.it&utm_medium=Wired+Top+Stories&utm_campaign=twitter&pid=5984
If the Texas Medical Board is motivated, they might be assembling a case against one or more of Burzynski’s employees. That might be all they can do after the court told them that Dr. Butthead can’t be charged if he didn’t perform these bs procedures with his own bloody hands.
Yeah, I’m shamelessly *shilling* for St. Jude Children’s Hospital…and for the fundraiser to raise $ 30,000 to *honor* Burzynski on his 70th birthday.
crowdrise.com/fightchildhoodcancer/
I’ve already made a donation, in memory of young Amelia Saunders, whose parents brought her to the Burzynski for antineoplastin treatment of a deadly brain stem astrocytoma. Amelia died on January 6th.
http://scienceblogs.com/insolence/2012/12/12/sad-news-about-a-burzynski-patient/
Thanks so much to Bob Blaskiewicz for giving us this opportunity to donate to this worthy cause.
I’ve been in contact with the medical board, and they are going by the book. They need someone, a former patient, to file a complaint against Dr. Burzynski. I’m not sure that former patients realize that they have that right, and when they do, they often die during litigation, like Lola Quinlan.
I raised the same question to the Board, Carl. And it is policy to not discuss any individual case, but the person said that it would seem reasonable that the board would consider such action, but they did not indicate to me either way whether they would or if it would be likely. So, we wait and we make some noise.
This is a way we can fight. I’m tired of hearing of bloggers bullied. I’m tired of the bodies piling up behind the damned clinic. I have seen over and over and over people at their lowest points being separated from their money, from their families, and from better care. 35 years is enough.
http://www.crowdrise.com/fightchildhoodcancer
I considered Dr. Burzynski’s clinic as an option and contacted them on several occasions. Ultimately, I decided against it, but it was not an easy decision. Here is why:
1) Over the year the clinic did help a number of patients who had no options left otherwise (or decided not to pursue them). The patients in the movie are real, the patients featured on the clinic web site are real. I personally spoke with two former patients who were saved by that doctor. Explain it as you wish, but this is undeniable.
2) The guy publishes regularly in peer-reviewed journals regularly. Again, critic as much as you desire, but he does have a vision or a direction that he tries to pursue and he’s done that for years if not decades.
3) Treatments are expensive, period. Yes, in their case it’s money first, talk later and the rates are astronomical. Well, recently I had to explore options outside of the US and guess what: I ended up paying ~$3,000 US for a blood test and a 1/2 hour consultation at an established, world renown university hospital.
And just a side question for you, dear science-rooted folk, why are you all so angry? If it helps, who the heck are you to decide for another person what to do? As a patient, I have met dozens and dozens of doctors who despite all their years of training and education knew so much less about the disease than I do. Sometimes you may want to consider some humility instead of your righteousness, especially when you are dealing with what is a statistical faceless patient to you, but someone’s life to that poor patient who ended up in your clinic.
Good luck to y’all.
@XSkeptic
I’m not so sure we are angry–not in the pejorative way you imply anyway. We are mostly heartbroken to see families get robbed by Dr. B. The people written about today and in previous posts are not “statistical faceless patient(s)” to us, quite the contrary. I think we show a great deal of humility and compassion toward the patients. Our anger and disdain is for the Burzynski Clinic and its personnel.
Who said the patients are not real–who doubts that for one minute.? If I did not think they were real, I would not be so angry and “righteous”.
You give no citations for your claims about “saved” patients or published papers, whereas Dr. Gorski has gone into great detail about Dr. B’s publications–and the lack thereof. He has written numerous times here and elsewhere in lengthy detail about all of Bursynski’s trials, publications (lack of), and many of his very real patients. Please try the search box at the top and read further.
Where is Burzynski’s humility when he takes tens of thousands of dollars from people whose children are known to be terminally ill? He preys on people’s refusal to accept the diagnosis; and yes, I have real life experience with this, so don’t tell me that people here are not coming from a place of compassion for people who have been given the worst outcome diagnosis. At least those doctors didn’t lie to them or give false hope.
@XSkeptic
“Dr.” B is in clinical trials, unless that has changed, so him demanding money is unethical to me. At most I would expect people to pay for travel, but never cost of care during a clinical trial. I too would like to see the source of these “saved” patients.
If he has actually cured anyone he would have published it in a heartbeat. But of course he is a maverick doctor that is being suppressed by big pharma, so they would never let his work see the light of day.
This Irish dokkie is just what is needed, a true counter-story to tell to the public a different tale from the stories of fake miracle-cures. A lot of folks don’t relate well to facts and stats … they need them wrapped up as a story, as Dr Hall rightly wrote not long ago.
Maybe the water is building up and the dam is at last about to break … if people in the UK start to ask their governments what the truth of such matters is, then the matter may be raised on a political level, between governments. Texas may be goosed into making some serious investigations, even taking action, in order to stop this scandal.
But first people have to see that it is a scandal … not giving hope to the hopeless, not “personalised” treatment, but human hyaenas cynically targeting the easy prey – the sick, the pregnant, the young, the old. For that we need stories, lots of stories, videos, Youtube and dokkies on TV, to get the message across in a palatable form. Great to hear that it is happening!
@All
With all due respect, he was a subject of Congressional hearings and has been under scrutiny for a long time. If he were a fraud, don’t you think it would have come out by now? Or, to rephrase this, why is he so powerful to be able to continue doing what he’s been doing while he is being accused of being such a quack?
Again, I don’t condone his clinic’s emphasis on money. The conversations that I had with them left a really bad taste. But I did personally spoke with two of his long-time patients (the referrals came from a common acquantance) and I am convinced that he is for real. His methods don’t work always (I don’t believe he ever claimed that), but it does work for some. Here is a link, the list of the patients is on the right, some with the contact information:
http://www.burzynskipatientgroup.org/
And one more time: critique as you wish, but those who go to see him are grown-ups and it is their choice to make.
It has.
Because the FDA and Texas Medical Board don’t have the resources to pursue the case properly.
Sure, but don’t you think consumers should be able to make informed choices? Don’t you think he has an ethical obligation to finish some of the trials he has apparently “started”? Economics has a concept known as assymetric information to describe situations where choices made by consumers are flawed by one party having more knowledge than the other. This seems like such a situation, Burzynski knows his treatments are unproven, yet still advertises and informs patients as if they were. Not to mention he alleges to be giving individualized treatments and whatnot – when he’s really just shotgunning high-dose chemotherapy at patients with no real rational, plus adding some piss extract dissolved in a solution of 30% sodium in the bargain.
Like so many SCAMsters, he seems to be promising false hope without any evidence, at a considerable mark-up and premium. Preying on the desperate with promises he can’t reasonably support does not seem like a valid choice, it seems like lying for profit. But perhaps that’s just me.
Also, are all his patients grown-ups? Are children prohibited from receiving treatment?
Finally, does your website include a section of patients who did not benefit from Burzynski’s treatments? Probably not – because they’re dead. This is known as selection bias, and is one of the main reasons anecdotes are not science.
So, why am I angry? Becuase large amounts of money is made off of false hope. Because patients deaths could have some meaning if they were involved in genuine clinical trial that answers a scientific question rather than being thrown away at considerable expense. Because Burzynski just seems like a greedy, unethical douchenozzle. I think those are pretty good reasons.
Xskeptic,
First of all, I hope you are in good health.
Keep in mind several of the names on the BPG website are dead. Burzynski doesn’t even give them the decency of a memorial.
The patients you spoke to have no idea what cured their cancer. Many of them had regular surgery. Look up the Jodi Fenton case for an example of Burzynski getting credit for something he probably had nothing to do with.
Yes, adults can make their own decisions. But many of Stan’s customers are children: the poor little kids who are being tortured in their final days of life.
Entire communities are being burdened by prospective Burzysnki customers begging for money.
For another side of the story, I’d suggest you read The OTHER Burzynski Patient Group website. Every case is the same: how many lies can Stan tell so many people before he’s stopped?
http://theotherburzynskipatientgroup.wordpress.com/about/
@Scott
1) It is your opinion. I respect it. Mine is that he is not a fraud.
2) Are you kidding? His case certainly attracted enough attention to be on everyone’s radar and then – not enough resources? This is a pretty weak statement.
@William
At his day and age only truly lazy can claim ignorance. Again, they may not be the most scrupulous clinic, but they do have a record of helping some patients who otherwise would have not had other options.
@Marc
Thank you, I am in OK health. You are making an assumption about who I spoke with. In one case, it was a person who was told no traditional options were left. Prior to that, all traditional treatments failed. The second patient was a child and his parents had to fight for a right to treat him. He received no traditional treatments.
Burzynski is long on rhetoric and extremely short on science. Further, he does not appear to be using a scientific approach, nor is he undertaking the rigorous kinds of trials required to test his hypotheses or treatments.
It is not merely laziness that makes Burzynski’s treatments appealing. Most patients lack the scientific background to understand what goes into cancer treatment. The general public for the most part doesn’t even realize that cancer isn’t a unitary diagnosis. Burzynski is portrayed as cutting edge science and treatments, and it is neither – it’s high dose chemo and some piss. Genuine cutting-edge scientists have not endorsed or even seen his results because Burzynski hasn’t published them. Burzynski’s clinic also wraps their expensive treatments in rhetoric of conspiracy, exagerrated claims, misleading anecdotes and a dearth of good science. They actively try to suppress dissenting voices, and they do not respond to criticisms of methods by improving their methods. You are equating all hope to be a good thing, but Burzynski is selling, at considerable profit, false hope with deceptive claims about the efficacy of their treatments.
Claiming they have a “record of helping some patients who otherwise would have not had other options” is extremely questionable. Because Burzynski does not engage in actual, rigorous study, you have no idea what their options were. Perhaps the patient would have gotten better untreated (making Burzynski’s expensive options a waste of money). Perhaps the patient would have gotten better getting the same care from a much less expensive conventional clinic. Perhaps they would have recieved a much lower dose of chemotherapy, and thus gotten better without unpleasant side effects. We don’t know, because that asshole doesn’t study anything.
I use “asshole” deliberately, because calling someone a liar is potentially libellious. According to Penn & Teller, “asshole” is legally just fine. And personally, I find it emotionally satisfying.
It’s not a matter of opinion. The FACTS are that there is no evidence that his treatments work, there IS abundant evidence that he is not abiding by the terms of his agreement with the medical board, and what he’s doing is grossly unethical on the most charitable interpretation.
There are only two possibilities. Either he actually has evidence – in which case he’s killing uncounted people by not publishing it and letting people benefit. Or, he doesn’t have evidence – in which case he’s taking all this money from patients under false pretenses. The latter is far more likely, and does make him a fraud.
Take a look at how long it takes for said bodies to deal with even more egregious cases. It’s the plain truth.
Oh yes, and
No they do not. They claim to, but have completely and utterly failed to support that contention with anything resembling evidence. Burzynski and his clinic have NO established record of doing anything for patients other than lightening their wallets.
He actually was convicted of insurance fraud, so that makes him a fraud.
I think the most sickening aspect of his false hope is the final indignity he offers to his customers: about a month before the inevitable, he provides a jolt of optimism with the “the tumour is breaking up” or “it’s turning into a cyst” and “that’s why you’re getting worse. It’s actually good news!” rote story he tells. I can’t think of anything more cruel to a patient and his family. He knows it’s all BS. Orac knew it was BS just by reading a patient’s blog.
WLU,
Could you imagine Penn & Teller taking on Burzynski?
[...] *Dr. David Gorski has a new Science-Based Medicine post out as of this past Monday on Burzynski’s antineoplastons treatment. Science-Based Medicine » Dr. Stanislaw Burzynski’s antineoplastons versus patients. [...]
[...] David Gorski already mentioned this on Monday, but Burzynski’s birthday is rapidly approaching (January 23rd) and I want to encourage our readers to donate to the Burzynski birthday campaign. [...]
Dr Gorski, do oncologists prescribe off-label?
The January 16 entry “Burzynski Patient Wayne Merritt’s Story” on the OTHER Burzynski Patient Group website quotes a patient, “[H]owever when the doctor came in to talk with us, she stated that she would not be able to give Wayne the Avastin infusion…. And that no other oncologist would be able to either. They are not allowed to administer drugs not approved for a particular diagnosis, this makes them liable.”
Would this be a legal thing? An insurance thing? Don’t insurance companies follow NCCN Guidelines in order to decide which off-label indications they’d cover (she typed naively)?
[...] He continues to offer unethical treatments to these desperate patients, who are being financially ruined in the pursuit of false hope and have been robbed of the opportunity for conventional palliative care and precious time with their families. For more information see the article Dr. Gorski wrote on the “Science-Based Medicine” website today at: http://www.sciencebasedmedicine.org/index.php/dr-stanislaw-burzynskis-antineoplastons/ [...]
I have to interject here on behalf of all of humanity.. Since you guys are dick-tectives, why don’t you check out the patents issued to the US Government and a researcher who had formally worked for Burzynski! These were filed years after Burzyski’s own patents! Some might even call it vindication for Burzynski science and research. Also, remember the people that are going to see him have exhausted all other means of survival! If 30% of them THEN recover when 0% should have, that’s a d@mn miracle!
http://www.freepatentsonline.com/5635532.pdf
http://www.freepatentsonline.com/6037376.pdf
http://www.freepatentsonline.com/5852056.pdf
Good thing the Government isn’t as skeptical as you all are…
Patents can be issued for any unique product or process. There is no test for effectiveness. Being patented is not evidence that a treatment is effective.
exhibit A: http://www.cracked.com/article_15693_the-10-most-ridiculous-inventions-ever-patented.html
exhibit B: http://www.cracked.com/blog/9-self-defense-gadgets-your-mugger-will-find-hilarious/
[...] last time I discussed Merola’s forthcoming movie, I mentioned that he had contacted me in December and asked me to appear as a Burzynski critic. [...]