(EDIT Please refer to my Master List of Burzynski blogs for more up to date information on the Burzynski clinic controversy.)
Last Sunday’s Observer featured a moving article about Billie Bainbridge, a four-year-old girl with an inoperable brain tumour. On the surface, it’s an upsetting but heartwarming tale of hope in the face of adversity, of everyone rallying round to raise money for a potentially life-saving ‘pioneering’ cancer therapy not available in this country.
Tragically, the treatment, at Stanislaw Burzynski’s clinic in Texas, is likely to be a waste of time and money and the optimism seems to be misplaced.
I’m hoping that at least some good can come from this. Billie’s fundraising campaign, (which has had celebrity backing from Radiohead and Peter Kay, among others) could provide some support to the family at this difficult time. I also expect that critical responses from higher-profile bloggers and hopefully, ultimately, newspapers like the Observer itself, will have the effect of informing people about Burzynski and his methods.
(EDIT 26/11/11 It has only just been brought to my attention that the Houston Press published this article on Burzynski on 31st December 2008.)
Similar campaigns
It is an all too familiar scenario… The following recent news reports are in support of various similar campaigns to raise money for treatment at the Burzynski Clinic:
Family’s US trip to save girl, 6, battling tumour, cambridge-news.co.uk, 23rd November 2011
Walkers go the extra mile for brave Chiane, Barnet and Whetstone Press, 2nd November 2011
Real life: I’ll do anything I can to stay alive for my baby, Daily Mirror, 27th May 2011
False hope?
Is it all in vain? This is such an awkward topic that I haven’t felt able to write about it until now, over six months after I first heard of Burzynski. I am also aware that, however much I wring my hands in my attempts to express myself sensitively, to do so is likely to lead to a great deal of criticism (for example, as happened here and here).
I do think it’s truly heartwarming that celebrities and the general public are trying to do all they can to support families like Billie’s – who find themselves in such a desperate situation. But they need to know where the money is going. People ought to know about the controversy surrounding Burzynski.
I don’t wish to shatter anyone’s hopes and dreams, nor am I in a position to comment in detail on individual cases. However, I strongly feel that any time, money, effort or hope invested in Burzynski will ultimately be futile and would be better spent on something else.
There is also the danger that, through misplaced faith in alternative therapies like this, people may decide not to put themselves or their children through conventional treatment. It appears that this indeed could have happened in this tragic case, of an Irish toddler who died of cancer after having treatment at Burzynski’s clinic instead of chemotherapy – which at her age would have been high risk.
Extracting the urine
People are spending hundreds of thousands of pounds, far more than they can afford, on Burzynski’s so-called ‘pioneering’ therapy. So what is it exactly..?
The treatment is based on ‘antineoplastons’, a term coined by Burzynski himself. Apparently, he used to extract these from urine (but now makes them in his laboratory).
These are not licensed as drugs but are instead sold and administered by Burzynski as part of clinical trials that he runs at his own establishments. These trials have gone on for over thirty years with no clear evidence of efficacy.
(EDIT 17/12/11 ‘Antineoplastons’ are the by-products of the body’s metabolism of the orphan drug sodium phenylbutyrate. David Gorski’s 12th December article discusses this in more detail and includes information on trials that have been carried out on sodium phenylbutyrate and cancer.)
Cancer Research UK make some of these points here, where they also state that according to the American Cancer Society, a year’s course of treatment at the Burzynski Clinic costs between 30 and 60 thousand dollars.
There also seems to be some doubt over Burzynski’s credentials, with the Quackwatch article stating ‘Burzynski’s claim to a Ph.D. is questionable‘.
According to this Wikipedia page, which links to this document, Stanislaw Burzynski was ‘found guilty of fraud’ in 1994 (for claiming reimbursement from a health insurer for an illegally administered cancer treatment).
There is a damning account here from a couple who feel they were ‘scammed’ and ‘would like to save others from experiencing the same’.
Reputation Management
Presumably because of the very real problems outlined above, Burzynski and his associates go to a lot of effort to keep their reputation under control.
There has even been a film, Burzynski, the Movie – Cancer Is Serious Business.
According to Amazon, this deals with his victorious battles with the United States government. It also states that various cancer survivors are presented in the film who chose his treatment instead of surgery, chemotherapy or radiation – with full disclosure of medical records to support their diagnosis and recovery.
The film has been watched and dissected exhaustively on this blog – which concluded:
There is no evidence that the cancer of any of the patients presented in the movie was cured or even improved with antineoplaston therapy, and based on Burzynski’s “evidence” it seems only fair that some are trying to put him out of business.
The book, The Burzynski Breakthrough: Century’s Most Promising Cancer Treatment and the Government’s Campaign to Squelch it seems to cover similar ground. Amazon’s information is scant, but these reviews give a clue to the content, for example stating, worryingly:
Conventional cancer treatments often don’t work, and consistently place added strain on the patient, but use of these drugs is bringing millions of dollars into the coffers of those same large companies that have brought pressure to bear on the government to eliminate Dr. Burzynski. Dr. Burzynski’s treatments are non-toxic, therefore eliminating the horrendous side-effects of conventional therapies, and it has been proven OVER and OVER that they DO work.
These people don’t take kindly to criticism. A typical reaction to a post like this one could be a series of condescending comments (for example as ‘Roger’ here), a request that the post be deleted* or even a legal threat.
An example of such a threat (notably, using a Gmail address and not from a lawyer but from Marc Stephens, who apparently works in Marketing) appears here, stating:
Every comment you made in your article is highly incorrect. I suggest you remove the article in its entirety or I will file suit against you immediately. I find it surprising for you to make careless statements without researching. You are highly aware of what you are doing, and I have court documents to prove this.
UPDATE 28/11/11
Threatening and intimidating emails were also sent to the prominent UK bloggers, Andy Lewis and Rhys Morgan. Andy published the original round of emails here. A further email can be seen in full here (complete with pictures).
The emails to Rhys Morgan, (who is seventeen and had pointed out to Stephens that he is still at school) were sent along with photographs of his house. He has now gone public over this and republished his original post. Andy Lewis has written a more detailed account here.
What can be done?
I intend to write to the Observer readers’ editor to outline my concerns. It is my hope that they will eventually publish a follow-up piece, highlighting the problems with Burzynski’s clinic. I will also write to Sense about Science and Cancer Research UK. I think it would be helpful if they were to publish an informative and balanced press release.
(EDIT 25/11/11 Cancer Research UK have now published this.)
(EDIT 29/11/11 Sense about Science have published this.)
I also plan to make some complaints about charities promoting Burzynski’s clinic (examples of these are here and here).
I regret that, much as I would love to support individuals and families who are affected by cancer in this way, I feel unable to donate money that will only go to line the pockets of Burzynski and his colleagues. I therefore intend to make a donation to a reputable cancer charity – and urge you to do the same.
Further Reading
I am aware that in writing this post, I am going over well trodden ground. The following posts are all recommended reading:
Stanislaw Burzynski and “Antineoplastons” Saul Green PhD, Quackwatch (revised Nov 2006)
Cancer Doctor Stanislaw Burzynski Sees Himself as a Crusading Researcher, Not a Quack Craig Malisow, Houston Press (31st Dec 2008)
Harnessing the generosity of kind-hearted strangers to pay for woo Orac, Respectful Insolence (5th May 2010)
False hope? Keir Liddle, The Twenty-First Floor (20th May 2011)
How much does hope cost? Buffy, And another thing.. (23rd May 2011)
The Burzynski Clinic Rhys Morgan (28th August 2011)
Doctor Burzynski’s miracle cure? Keir Liddle, The Twenty-First Floor (30th August 2011)
BBC promoting funding for Quackery? Keir Liddle, The Twenty-First Floor (31st August 2011)
Burzynski in Ireland; arguing with believers Buffy, And another thing… (4th November 2011)
Skeptic News: Guitars for Quackery? Keir Liddle, The Twenty-First Floor (6th November 2011)
Stanislaw Burzynski: Cancer fundraising for quack treatments Galway Skeptics (6th November 2011)
A Physician Shares Her Thoughts About Dr Burzynski’s Work Steve, That Crazy Pharmacist (7th November 2011)
The False Hope of the Burzynski Clinic Le Canard Noir, The Quackometer, 21st November 2011 (21st November 2011)
Burzynski The Movie: Does It Prove The Efficacy of Antineoplastons Against Cancer? jli, Anaximperator (22nd November 2011)
Burzynski: piss-poor cancer therapy at a hefty price anarchic teapot, Short and Spiky (22nd November 2011)
___________________________________________________
UPDATE 25/11/11
New Posts
Many new posts have appeared over the last day or so – in response to Andy Lewis (of the Quackometer) publishing an email exchange between himself and Marc Stephens (claiming to represent the Burzynski Clinic), who asked Andy to remove a critical post.
There are lists of new posts here and here.
___________________________________________________
UPDATE 26/11/11
Although they haven’t replied to me yet, The Observer have been in touch with another correspondent, indicating that they are carrying out research into the story and the clinic and that they may print his letter. The reply is here in full
UPDATE 27/11/11
The Observer have now published the letter mentioned above in an edited form. Details of the editing (and of the emails they have not yet answered) are here.
*UPDATE 27/11/11
The Tales of the Genomic Repairman post, which had been taken down following a ‘cease and desist’ request from a ‘representative’ of the Burzynski clinic is now back online.
Josephine Jones 
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I have now written to The Observer, Sense about Science and Cancer Research.
My email to The Observer said:
“I write to express concern at the recent article concerning the Billie Butterfly Fund and the Burzynski clinic.
I think the article itself was very honest, moving and well written. My heart goes out to Billie, Luke and all the family who have found themselves in such a desperate situation. I think it’s wonderful that Luke has had so much support from his media contacts and celebrities and wish them all well.
However, I have some strong concerns about Burzynski’s clinic. While I don’t believe the article was inaccurate as such, I do feel it was misleading in that it did not report the controversy surrounding this clinic. For example, Burzynski has been carrying out clinical trials on ‘antineoplastons’ for over thirty years and there is still no clear evidence of efficacy. Antineoplastons are not approved by the US FDA. There have been no randomised controlled trials demonstrating their effectiveness ever published in the peer reviewed scientific literature.
These issues have been written about widely online (including on my own blog: https://josephinejones.wordpress.com/2011/11/23/controversy-surrounding-burzynskis-pioneering-cancer-therapy-should-be-reported-in-newspapers/) but as far as I am aware, have never been discussed in the mainstream media. I believe this needs to change.
I think The Observer should publish a balanced and informative follow-up article, pointing out some of the problems with the Burzynski Clinic. To this end, I have also been in touch with Sense about Science and Cancer Research. I hope that perhaps they will be able to help, for example by writing an objective and informed press release.”
I’ve been doing a little sleuthing as well. Firstly, I find it odd that the Faculty of Medicine at Lublin University makes no mention whatsoever of such a brilliant student http://www.umlub.pl/index.php?ln=pl&i=3759 I mean, a PhD 1 year after getting his MD? They would be shouting it from the rooftops if thay had such a brilliant old boy doing such groundbreaking work.
Here’s Burzynski’s 43-page (!) “CV” http://www.burzynskiclinic.com/images/stories/CV_DrB-2010-CURRENT.pdf It basically contains a list of organisations and publications, which may or may not be a typical quack attempt to bewilder and drown in excess, useless information. I notice (it was the first thing I checked, after Lublin) that he claims membership of The Royal Society of Medicine (U.K.). Who have a certain Baronness Greenfield speaking at an upcoming “do”. Not reassuring http://www.rsm.ac.uk/academ/well2012.php
I’m afraid anything I may have to say on the subject of Burzynski’s PhD would be pure speculation…
I note that Peter Bowditch (who as mentioned above, has already had threatening emails http://www.ratbags.com/rsoles/comment/burzynski.htm) has been tweeting the Burzynski clinic to ask for details of where the PhD came from.
Notable tweets include this: https://twitter.com/#!/ratbagsdotcom/status/139491159004291072 and this: https://twitter.com/#!/ratbagsdotcom/status/139501013521530880.
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If you do find something interesting about his PhD, let me know and I’ll cross post it here:
http://doctoredcv.blogspot.com
@anarchic teapot Anyone who mentions membership/fellowship of Royal Society of Medicine on their CV is deeply dodgy. It’s a club that you pay to join, with fairly minimal entry requirement, but it’s used to give a totally spurious impression of distinction. See: http://tinyurl.com/3on8qu7
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Dr*T – According to @RatbagsDotCom on Twitter, the Medical University of Lublin does not have a doctoral programme. Perhaps Peter is the person to speak to on this.
I’m going off topic a bit here but if you’re looking for new entrants for http://doctoredcv.blogspot.com/, may I suggest ‘Dr’ Robert O Young? His PhD came from the same place as that of Ms McKeith (my most recent post on Young: https://josephinejones.wordpress.com/2011/10/15/dr-robert-o-young-shamefully-continues-to-imply-he-can-reverse-metastatic-breast-cancer/).
Other dodgy so-called ‘Drs’ I’ve written about include San Gogana (https://josephinejones.wordpress.com/2011/10/19/asa-adjudicate-against-dr-san-goganas-optimum-health-uk/) and Stephen Ferguson, who has THREE PhDs (https://josephinejones.wordpress.com/2011/05/19/i-wish-i-could-be-like-dr-steve/ and https://josephinejones.wordpress.com/2011/10/12/another-bloody-disgrace-from-groupon/)
And here is my email, just sent to the Observer:
to: reader@observer.co.uk
Mr Stephen Pritchard,
Reader’s Editor,
The Observer.
Dear Mr Pritchard,
I am writing about a story that featured in the Observer magazine last week (Luke Bainbridge, The worst year of my life: cancer has my family in its grip), concerning attempts to raise £200,000 so that a child with cancer could be sent to the USA for treatment. On the surface, this looked like a positive story about the willingness of celebrities to donate their time and efforts in an attempt to overcome a tragic situation.
The implication that many readers might draw is that it is necessary to go to the USA because the NHS lacks the funds for such an advanced treatment. In fact, the treatment is not recommended by any cancer experts in either the UK or the USA. The background is fully explained in this blogpost from Cancer Research UK: http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/. The reason the treatment is available in the USA appears to be because ethical regulation is far laxer there than in the UK. Any person who wishes to sell an unproven treatment to patients can do so by describing it as a ‘clinical trial’. I find it tragic that this loophole in US regulation allows unscrupulous practitioners to exploit highly vulnerable individuals, and am dismayed to find the Observer endorsing this practice.
Yours sincerely,
(Professor) Dorothy Bishop
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There is an old Quackwatch page here which suggests, on various lines of evidence, that Burzynski actually got the equivalent of a taught (i.e. not independent research) MSc in Medical Biochemistry (in one yr) at the Lublin Medical Academy where he had done his medical degree. The Quackwatch page (and Dr B’s published CV) suggest that the PhD is supposed to come from Lublin.
The most interesting question is why someone would feel the need to ‘upgrade’ a (mostly taught) MSc into a proper research PhD on their CV. I find it hard to think of that many innocent explanations.
I have updated the post above to say that another correspondent has had a reply from The Observer indicating that they are now researching the story and the clinic:
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There has been at least one good piece of newspaper reporting on Burzynski, in the weekly Houston Press in 2009: http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-burzynski-sees-himself-as-a-crusading-researcher-not-a-quack/
Jim,
Thanks for the link – I hadn’t seen that.
Guys, he’s passed the litmus test with the Supreme court.
Credential compatibility from Poland to the USA have no relevance to whether or not people are beating cancer.
Peter Bowditch’s attempts to find evidence of Burzynski’s elusive PhD are detailed here, under the post titled ‘Burzynski bastardry continues’: http://www.ratbags.com/rsoles/history/2011/11november.htm#26burzynski3
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@mrgamma
Claiming to have an advanced degree that you never actually got, perhaps in order to convince people you are a more eminent doctor/scientist than you actually are, is clearly directly relevant to someone’s credibility.
When there is no actual evidence that people are being cured, which is almost invariably the case with ‘alternative’ therapies, then ‘selling’ your cure becomes all about how much confidence you can convince people to put in you. Fancy-sounding letters after your name are part of that. Hence why lots of quacks buy a membership of the ‘Royal Society of Medicine” so they can put “Fellow of the Royal Society of Medicine” on their letter-head.
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Thanks for helping to bring this situation to the general public.
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Wow you are hell bent on cussing this treatment! I’m feeling a LOT of hate and anger towards it. I tell you what…. do some basic analysis and say some simple math on the success of the millions of patients undergoing or who have undergone conventional treatment versus the success of the small minority of patients paying for Burzynski’s treatment. You might just find your negative energy better off chanelled somewhere else, if you know what I mean! LMAO!
My son was 10 when he was diagnosed with an in-operable, untreatable brain tumor, without any other treatment he was given an exception by the FDA and began Dr. Burzynski’s clinical trials in 1998. Yes it was expensive and we had to raise money to get there, but when we walked away cancer free a few years later I stilled owed them $100,000+ that they never pursued me for because I was a single mother of 3 boys who barely made ends meet. My son is 25 today and would not be alive today if not for Dr. Burzynski. Would I raise money again and do the same thing all over again…you bet I would. Just a loving and grateful mother sharing the facts of an Antineoplaston success story!!!
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Many people make the mistake of assuming that everything must all be black and white. If people would look carefully at the facts they would realize that some of Dr. Burzinski’s patients benefited from his protocol, others were harmed, and some just wasted money for a treatment that made no difference.
The FDA did a huge disservice to the public by first restricting antineoplaston therapy to only those who had undergone unsuccessful conventional treatment and now by trying to ban it outright. These actions clearly are not justified. Antineoplastons should be made widely available with the understanding that some cancer patients will benefit and others won’t. Sadly the FDA is in the pockets of powerful special interests and will never do what is right.
Kelly, the stats so far released by Burzynski are cherry picked and do not demonstrate that the ANP’s had any effect on the illness. There is simply no statistical basis to say that the ANP itself made ANY positive effect on the cancer of any patient, but plenty of evidence of toxic harm (it is not normal to have to drink gallons of water simply to survive). The only disservice to the public is Burzynski charging $100.000s whilst making no attempt to show that it has any positive effect by publishing the trials that the patients have signed up to. It is a betrayal of the pact doctors make when asking people to take part in trials, and completely unethical. There is no way that the treatment can be made available on the basis that some cancer patients will benfit from it, as it has simply not been shown that anyone has benefited form the ANP’s ever. Zero evidence has been presented that discounts confounding factors, and the (by Burzynski’s own comments in press releases) 8000+ patients treated do not seem to have resulted in large numbers of patients cured, so it would seem unlikely that the treatment itself does anything based upon what has been released so far. On that basis, no established benefit whatsoever, but definite harm from it, I cannto agree with your analysis that he FDA have commited a disservice. Certianly Burzynski by not completing trials and publishing full data has done so.
Sebastianarmstrong, I have a very hard time believing that almost all the testimonials could be wrong. Actually both sides are wrong. Some patients did indeed benefit from antineoplastons, regardless of what powerful special interests or the so-called experts want to believe. Some patients were indeed harmed regardless of what Dr. Burzinski wants to believe. I do not believe the FDA, the CDC, or any of the other government agencies can be trusted to act as impartial umpires of the facts.
The government never allowed Dr. Burzinski to perform an honest clinical trial. They restricted the study to patients who had already been sickened with risky surgeries, radiation, and/or chemotherapy. Many people traveled to Houston seeking antineoplastons and could not get them because of FDA dictates on who could get the treatment.
The problem is hardly confined to cancer treatment. Every year we are told by our government to get a flu shot. The threat of a particular strain of flu is often hyped up and exaggerated. These vaccines are usually not double blind tested for effectiveness and they often contain toxic mercury (thimerosal). The government isn’t telling us the truth when they say there is nothing to fear from thimerosal. The government doesn’t want to upset the vaccine manufacturing company gravy train. The government has purposely covered up cases where someone was paralyzed or suffered other serious harm after getting a shot.
ALL the testimonials? There are very few which are from people with 5 year plus survival, indeed most of the stories on the Other Burzynski Patient Group seem to be where they are told to speak to people who are currently undergoing treatment, and therefore don’t even have 1 year survival to talk about. With over 8,000 cases you would expect some survivors, with the existence of slow growing tumours, you would expect some 5 year plus survivors where there is actually no effect at all, then there is diagnosis. So many ways, and so few testimonials from survivors who outlived the median prognosis or 5 years. So the question is, what effect did ANP’s have, well the only way to tell is to publish all of the trials, so the effect can be measured against the existing treatments. But he won’t do that.
You can pretend that he was not given the chance to do fair trials, but that is simply untrue. It is as if you believe that Burzynski has been made subject to a condition that only applies to him. He hasn’t, yet in 30+ years and 60+ registered trials he has come up with nothing to establish any causal link and so start a trial with these conditions removed. It would be irresponsible of any regulator to sanction trials which replaced treatment of terminal patients with a proven (if somewhat slim in some cases) chance of success due to a proven effect, with something with no proven effect .
There is no evidence that anyone has benefited from ANP’s, it has never been shown that eh ANP’s themselves had any effect whatsoever. If you can point me to the research you are relying on for the claim that the ANP’s themselves did something for a patient please do.