Dr. Burzynski and the cult of personality of the “brave maverick cancer doctor”

I thought I’d be leaving the topic of Dr. Stanislaw Burzysnki and his combination of Personalized Cancer Therapy for Dummies-level “personalized, gene-targeted cancer therapy” coupled with his “cancer-curing” antineoplastons, which have morphed into an orphan HDAC inhibitor used off-label as part of his pricey everything-but-the-kitchen-sink” combination of targeted therapies and old-fashioned chemotherapy. After all I figured that there would probably be nothing new to say before sometime in January, when he is schedule to appear before the Texas Medical Board to answer for his dubious medicine again, the first time since the 1990s.

Then I saw this story from the U.K.:

The family of a five-year-old girl with a rare form of brain cancer are hoping to raise £130,000 to send her to a US clinic which could be the only chance of saving her life.

Chiane Cloete’s family in Enfield want her to be treated at the Burzynski Clinic in Texas after she was diagnosed with a highly aggressive form of cancer.

The clinic’s course of treatment, which aims to “switch on” the genes responsible for cancer suppression, is not available in Britain. Her father, Chris, a company director, stepped aside from his role this year to help her mother Andia look after their girl. The couple also have a two-year-old son Estian.

She is being treated at Great Ormond Street Hospital where an MRI scan next Thursday will see whether the cancer is spreading and if she is fit to fly.

Mr Cloete said the discovery of the cancer meant the family’s “whole world was turned upside down in a matter of seconds”, adding: “She is like any normal child. We are just a normal family, looking after her is so intense and takes up so much time. She is so brave for her age and a fighter. I have no doubt we will get the funds needed. The snowball effect is starting to take an effect.”

Oh, no. Not again. A year and a half ago, I called this sort of thing harnessing the generosity of kind-hearted strangers to pay for woo. More recently, as in last month, there was the famous case of Billie Bainbridge, a similar sort of child in similarly dire straits, whose family managed to attract the attention of U.K. performer Peter Kay, who did two charity concerts to raise £200,000 in order to send Billie to the Burzynski Clinic for his dubious and incompetent ministrations. Chiane’s family is taking a similar approach in that they’ve set up a website (Help Me Fight Cancer) that advertises fundraising events, Chiane’s Diary, and, of course, the appeal for funding for the Burzynski Clinic:

I need your Help to fight my Brain Cancer”

We desperately need to raise £130,000 for Chiane. We have to take Chiane to the Burzynski clinic in Texas (USA) for Innovative and pioneered cutting-edge Personalised Gene Targeted Cancer Therapy that is customised specifically for her.
The £130,000.00 covers her treatment costs ONLY. We did not include any costs or expenditure such as traveling, accommodation etc. to the States.
For more information please visit www.burzynskiclinic.com

As Elton John and Bernie Taupin would say, I’ve seen that movie, too. Whenever I start getting too cynical about human nature, I think of all the people who are more than happy to throw money at children like Billie and Chiane, children whom they don’t know, and I get a warm, fuzzy feeling inside; that is, until I think about the purpose for which the money is being raised, namely to pay for an overpriced, incompetently designed, unproven therapy that is incredibly unlikely to benefit the child. It’s horrible to contemplate the death of a child due to a disease as horrible as the brain cancers causing these children’s suffering, just as it’s profoundly saddening to consider the pain their families endure as they become more and more ill, deteriorate, and ultimately die. Who wouldn’t want to do anything in his or her power to try to help these girls to live to a ripe old age? I understand. Really, I do.

But I do not condone. And neither did the skeptical blogosophere, which reacted to the Billie Bainbridge story with strong criticism of the British newspaper The Observer, which published an incredibly credulous article in which almost never was heard a discouraging word about Dr. Burzynski and his claims were barely questioned, and then only as as an afterthought. Then, in response to criticism, the editors of the paper doubled down on the stupid. In this, the original article about Chiane Cleote in the Evening Standard matches The Observer for utter cluelessness. The ironic thing is that it was the reaction to criticism of Burzynski in the skeptical blogosphere by a flack of the Burzynski Clinic, Marc Stephens, who is not a lawyer but nonetheless threatened bloggers in the name of the Burzynski Clinic as though he were its lawyer, that brought the attention of the larger skeptical community (and, I must admit, of myself) upon Dr. Burzynski. Worse, even though the Burzynski Clinic disavowed Stephens, it didn’t disavow legal threats to silence bloggers. Before that, Burzynski had been mostly flying under the radar. After that, hundreds of blog posts were written, and I started looking into aspects of Burzynski’s activities that I had not seen discussed before and did my best to publicize them.

What Dr. Burzynski is selling is hope, but it’s a false hope that glimmers no more brightly than the hope offered by conventional therapies. Certainly he’s never been able to demonstrate that his results are any better than any other cancer center, and, as has been pointed out, patients he promotes as being success stories very frequently turn out, when someone follows up on them later, to be nothing of the sort. Often they turn out to be dead of their cancers.

Dr. Burzynski’s stock in trade, as far as evidence goes, is anecdotes and case series without control groups subject to major confounders and selection bias, all wrapped in a patina of science-y sounding gobbledygook designed to mimic what real oncologists and real science do. He keeps numerous clinical trials open to allow him to administer his antineoplastons but never seems to be able to progress to phase III trials or to publish his clinical trial in halfway respectable journals. Unfortunately, although Dr. Burzynski is a good mimic and very talented at portraying the “brave maverick doctor,” he’s not so good at actually doing oncology. As I have shown before, he uses the results of a commercial test that does nothing better that what a lot of other cancer centers do and produces recommendations that are facile and whose applicability to the tumor being tested ranges from the painfully obvious without the test to the highly questionable to come up with cocktails of chemotherapy and targeted therapies without regard to potential interactions. Then, of course, he throws antineoplastons–excuse me, phenylbutyrate–into the mix. The result is a gmish of up to six or seven drugs thrown together without consideration of potential drug interactions, the likelihood of which rises markedly with each new drug added to the cocktail. Worse, Dr. Burzynski tells the press and his patients that he is not giving chemotherapy when, in fact, he gives lots and lots of chemotherapy in a non-evidence-based manner, along with huge doses of antineoplastons, either given as antineoplastons many grams at a time or as phenylbutyrate, which is an HDAC inhibitor and thus chemotherapy.

If the Cloete family sees this blog, I sincerely hope they will read these posts by me, which expound upon all the points listed above:

It is not my intention or desire to crush the hope of such families. It is, however, my intention to put Dr. Burzynski’s claims in context for them, so that they understand what they are getting into and that Dr. Burzynski is not a savior. He isn’t even a good doctor, in my opinion, and he’s certainly not a good scientist. Parents need to realize that in reality their children are no more likely to survive due to Dr. Burzynski’s ministrations than they are if they just stick with their current oncologists. It might sound cruel to say so, but I would argue that it’s far more cruel to hold out false hope at a price of hundreds of thousands of dollars. It’s the very epitome of “misinformed consent,” in which they are given a far more optimistic assessment than reality would warrant. Worse, if they spend the money, they’ll squander the short time they have left with their children subjecting them to Dr. Burzynski’s cocktails. In the end they’ll still have a dead child, but if they save the money and focus on good palliative care they can at least maximize their quality time remaining with their children. More importantly, the child will suffer less.

There’s another aspect about Dr. Burzynski that is disturbing. I had been thinking along these lines, although not as starkly, but wondered whether I should bring up the issue. Then Ministry of Truth published a post, Burzynski – Conscience and Complicity. In it, he argues that, as bad as we feel for the parents of these children, it helps no one if we in essence “give them a pass” for their promotion of Dr. Burzynski’s medical misadventures. First, he notes something that’s painfully obvious to anyone who’s looked at Dr. Burzynski’s history over the last three decades:

For as much as I understand and accept the validity of the reasons given for taking a softly, softly approach with Burzynski’s patients and their families, the problem I have with it is it that it too readily fails to illuminate what is one of the most, if the most, despicable facets of the Burzynski Clinic’s business model.

By preying on people who are genuinely in a desperate situation and charging them huge sums of money to join one of the never-ending series of so-called clinical trials, the overwhelming majority of which fail to report any kind of results, Burzynski not only scalps these people for tens, and even hundreds of thousands of pounds/dollars but, in some (many?) case he also compels them to serve as his accomplices and even, when the critics begin to circle, as his own human shields.

This strikes me as the most despicable aspect of the Burzynski business model. Over the years, he has encouraged, if not outright built up, a cult of personality around himself, in which he is portrayed as the one doctor who can cure incurable cancers but, for all his efforts, is rejected and “persecuted” by the medical establishment when all he is trying to do is good. Any criticism directed against him inevitably results in patients and families coming out of the woodwork to extoll the virtues of this “brave maverick doctor” and proclaim him as the man who is saving their lives or the lives of their loved ones. It’s a strategy that, at times, has worked brilliantly, as demonstrated in the numerous scenes of patients in the incompetently produced propaganda piece Burzynski The Movie castigating lawmakers, the FDA, and the Texas Medical Board for going after Burzynski, telling heart-wrenching stories and proclaiming that they will die if Burzynski is shut down. It’s an incredibly potent P.R. weapon, and one that Burzynski is not in the least bit shy about using, as you can see in this video:

Notice at the end how the video announcer says of the Texas Medical Board proceedings that “this ‘trial’ is going to happen unless we the people stop it from happening.” It’s a direct appeal to popularity, as though popularity should have anything to do with whether or not the law is enforced. The video then finishes with a dire warning that, if the Texas Medical Board has its way, this will happen to Dr. Burzynski:

  • Medical license revoked
  • Closure of the clinic
  • All patients abandoned
  • No likely chance of FDA-approval of antineoplastons

Of course, no patient will be “abandoned,” but that’s how it’s portrayed. I can only admire the “restraint” of the video director for not portraying the Texas Medical Board as baby-eating cannibals who want to eat children with brain cancer. I suppose that’s restraint compared to anti-vaccinationists, anyway.

The video concludes by asking, “What are you going to do about it?”

I know what I’m going to do about it. I’m going to follow the story of Dr. Burzynski as his case finds its way to the Texas Medical Board early next year, and I’m going to blog about it, applying skepticism and science to his claims and those of his followers. As surgical oncologist and cancer researcher, to me the failure to shut Burzynski down decades ago points to the utter inadequacy of some aspects of our drug regulatory process and, of course, our state medical boards. While I sincerely hope that this time it will be different and Burzynski’s clinic will finally be shut down, I fear it won’t.