By Keir Liddle
Supporters of Burzynski like to take skeptics for task for all manner of imagined slights. I’d like to take the opportunity to address some of these and explain why I have written and keep writing about the Burzynski clinic and Antineoplastons.
I first encountered the Burzynski clinic following a high profile patient funding campaign that had been promoted by a UK celebrity. Ironically it was the high volume of RT’s from skeptics that drew my attention to it and encouraged me to look into what was going on more. Simply because there were a couple of red flags that the tweets threw up mainly pointing out that this highly expensive “life saving” therapy was not available on the NHS.
Now despite the more ridiculous “death panel” views of the NHS and patient advocacy groups pushing for politicians to interfere in purchasing and procurement strategies for cancer drugs I know that the regulatory bodies NICE and the MHRA exist to evaluate the available evidence for new drugs and treatments and recommend whether our publicly funded, free at point of delivery, health service should offer them. Unlike many of our more conspiratorially minded America friends I don’t believe regulation in healthcare is a bad thing or a conspiracy tied to the pharmaceutical industry. Rather I think they are a highly important line of defence between health professionals, patients and Big Pharma ensuring that the medical treatments recommended are done so on the basis of evidence and not the marketing muscle and hype of the Pharmaceutical industry.
So whenever I see “life saving treatment not available on the NHS” being thrown about it always gets my skeptic sense tingling.
Looking into the Burzynski clinic and ANPs I very quickly discovered that this therapy, which has been used for over 35 years, had a shocking dearth of evidence to support it’s safety or it’s efficacy. Very quicky it became apparent that the claims of Burzynski, appearing on all manner of famously credulous sites who support “natural” and “alternative medicines” and formerly on the clinic website itself, were over-hyped, inaccurate and potentially dangerous.
So I determined, after no small amount of soul searching, to blog about the clinic and to reintroduce people to the prior debunking work of Saul Green and others over on the Quackwatch website. I was worried about the impact that exposing the false hope I believed, and still believe, Burzynski was offering to patients could have on the very patients I was concerned about. It was not until after a few discussions on twitter and elsewhere that I determined any negative impact my writing on this could potentially cause was very much offset by the cruel and misleading impact false hope could have on potential patients.
I only came to this conclusion after hearing some truly shocking personal stories from the family members and friends of people whose loved ones were not only lost of cancer but also lost to chasing false hope. People deserved to hear the criticisms of the clinic and antineoplastons. Someone had to redress the balance of uncritical and conspiratorial fawning over Burzynski. I doubted I would, and still doubt I, have any big impact on the clinic or on people opinions about his treatment but morally I couldn’t reconcile myself to staying silent.
You may find this overly dramatic or self aggrandising and perhaps it is to an extent but it is also true.
What happened next I think surprised everyone and now it seems Burzynski has become a by-word in the Skeptic community for those who abuse science and medicine in the name of exploiting the vulnerable. Whether this is deserved or not remains to be seen. But there are those who would suggest Burzynski is damned if ANP work and damned if they don’t. Mostly I am inclined to agree with them.
We have had defences of Burzynski that rely on ANPs efficacy which to my mind means that there are two options given how Burzynski has conducted himself (rejecting a Big Pharma funded and organised conspiracy as nonsensical.):
1. ANPs don’t work and Burzynski, through hubris, incompetence, avarice or a mixture of all three has subjected countless desperate and vulnerable patients with terminal conditions to a pointless treatment for an exorbitant price.
2. ANPs do work and Burzynski through hubris, incompetence, avarice or a mixture of all three has denied thousands of patients worldwide access to this treatment through a stubborn refusal to abide by the process, methods and regulations that everyone else in medical research is ethically and legally bound by.
Does that seem unfair? I don’t think so. Is it as clear cut as that? Morally I fail to see an alternative but scientifically the picture may be slightly blurred. Given ANPs may have some role to play in cancer, but not as a sole treatment rather as an adjunct to support chemotherpay, but even then research from others (focused more on Sodium Phenylbutrate an orphan pro-drug that metabolizes into ANPs) seems to suggest that if we are to be charitable and believe ANPs aren’t useless other, newer drugs are already far better at doing what ANP might do.
What of the incompetence? Well the issues with Burzynskis approach to research we have summarised in a number of previous articles.
We then come to the issue of how Burzynski sells and promotes ANP.
Though this is done at arms length through “independent” sites such as the Burzynski patient group and the Burzynski movie the clinic recommends these sites to potential patients in their literature. Claims have been made that ANPs are natural and non-toxic that are untrue. Claims have been made that the clinic offers personalised or gene targeted therapies of which Burzynski is a “pioneer” which are also untrue.
As was helpfully pointed out in one of the comments on a previous 21st Floor post about Burzynski these claims are problematic, to say the least, if the clinic wishes to preserve it’s “unique selling point”. Wayne Dolcefino, in defence of the clinic, stated that:
““One other note, I notice people seem to have trouble with my comments about the vast majority of patients are not involved in clinical trials at the clinic. They are not. I am not sure how I can be any clearer.”
As the commentor notes:
This is very clear and, if true, very problematic. This means that Burzynski would be selling patients unapproved therapies outside a trial which is totally illegal. This is true both for “antineoplastons” as well as the convential drugs he is using off label i.e. in contexts not approved by the FDA. In defending Burzynski against his mistreatment of the clinical trial process, this – taken at face value – is an admission of far greater criminality.
The only defence would be that Burzynski is treating his patients with approved drugs for the correct indication. That destroys any claim to be in any way different to a standard, genuine oncologist.
So is it the Skeptic narrative that Burzynski is damned if he does and damned if he doesn’t fair?
Regrettably I have to conclude it is. Publishing his results will go someway to settle the debate on whether or not ANPs work but as many have shown this now goes well beyond the simple matter of quack or not. The Burzynski affair has now highlighted a number of issues and problems with the clinic and it’s general practices that also need to be addressed.
It is very hard to believe that something is not rotten in the state of Texas.