(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)
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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.
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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 
Sebastianarmstrong, you at least admit that conventional treatment isn’t all that promising. My father died 12 years ago from throat cancer. He underwent extensive surgery and radiation therapy which probably delayed his death no more than 16 or 17 months at most. The pattern we’re seeing with Dr. Burzinski is that brain tumors are the main type that responds to his antineoplastons. By the way, Dr. Burzinski isn’t the only one doing this type of research. It’s also being done overseas and many establishments in the USA are just ignoring that research.
Clinical medical studies typically cost millions of dollars. This is why companies with deep pockets have so much power. Yes Dr. Burzinski was paid well for the medical treatment he provided, but in view of his constant legal battles, he has had to spend huge amounts of money on costly lawyers to save his hide. He really hasn’t been in a position to spend a lot on clinical studies. The FDA kept imposing severe restrictions on who could get antineoplastons. I don’t know that I want the government making or nixing medical decisions which is exactly what the FDA did with Dr. Burzinski’s patients.
We hear the story that the government purposely destroyed many of his medical records to sabotage his attempts to make antineoplastons an accepted medical treatment for cancer. I cannot discount this story out of hand. I just don’t trust the government to always tell us the truth. I believe that money talks. This refers not only to the bribery of our political leaders who pass laws but also the bribery of government regulators. I believe that those with deep pockets can corrupt the FDA, the CDC, and other agencies
just like they corrupt Congress, state legislators, the president and state governors with large campaign donations.
The USA Today investigation merely rehashed the talking points of Dr. Burzinski’s critics. They never proved that no one benefited from his treatments.
In some cases we are lied to cover up something politically embarrassing. For example there are reports of harm from tainted vaccines in the military being covered up. The agent orange controversy might be such a case.
Kelly
No we are not seeing that brain tumours respond at all, we are seeing responses to decadron, misreading of scans etc there is no evidence that the brain tumours are responding to the ANP whatsoever that has been presented, just claims that it has backed by anecdotes. WHERE IS THE TRIAL DATA?
As for ignoring the research, nonsense, no one has published anything other than a few back dated case studies, and in vitro studies, the research categorically does not provide any evidence that ANP’s effect cancer progression in vivo.
I really think the $8million mansion belies the point that he had to spend it all on legal fees, furthermore Dr Burzynski chose to start multiple trials to make sure he could sell the treatment to as many as possible rather than concentrating his expenditure on one or two forms of cancer, does that sound like someone who was trying to conduct legitimate research? Of course not. The only stopping Dr Burzynski from doing a proper trial is Dr Burzynski.
Yes the FDA limited who could receive the drugs, because there is no evidence that they have any positive effect, and there is a massive list of side effects. They have since stopped it because a child died, and still there is no evidence that it has a positive effect. On the risk benefit equation there are only proven risks, and zero proven benefits. As such the only medical decision that any Doctor not making money out of it could make would be not to use ANP.
As I said before if you have evidence that there is a positive causal effect from the use of ANP’s please present it. I doubt (unless you are Burzynski) that you have the data, and I doubt (if you are Burzynski) that you would choose now to publish it, when he could have done so at any point and no doubt would have done had it been positive. It seems overwhelmingly likely that the data shows that ANP’s are ineffective. If it shows that they are effective Burzynski is withholding the information and people are dying. So why do you think he won’t publish?
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