Followers of the Burzynski saga will be aware that the release of the latest Burzynski movie has been delayed. Apparently this movie has an associated Q&A, but for some reason the maker of this movie does not want anyone to see what's in the Q&A until the movie is officially released.
This made me think that a Q&A about Burzynski would be a useful resource, so I've written my own (with a little gratefully recieved help in researching links from my Twitter buddy @IamBreastCancer).
Who is Dr Burzynski?
Is he a qualified oncologist?
No. A bit odd for someone running a cancer centre, isn't it?
Is it true that he's a convicted fraudster?
Not quite. He was sued by a medical insurance company when he defrauded them. The court found that Burzynski had indeed been fraudulent. However, this was a civil case, not a criminal one, so it's not quite correct to say he's a convicted fraudster.
Nonetheless, he has been found by a court of law to have been fraudulent, so it's quite a fine distinction.
What is he best known for?
Well, apart from the questionable way in which he runs his business, he is best known for his discovery of antineoplastons. He first discovered them in the
1970s 1960s, and has been treating patients with them ever since the 1970s.
What are antineoplastons?
Antineoplastons are a collection of substances naturally found in human urine (though these days, they're made synthetically). Burzynski claims that they can cure cancer, though that claim seems questionable. We'll come back to that later.
How does the Burzynski clinic promote their treatments?
Mainly through the medium of movies. Their main promotional effort appears to be the Burzynski Movie, first released in 2010. This movie, made by a director with a background in advertising, Eric Merola, is basically an over-long advert for the clinic. It presents a highly one-sided view, in which Burzynski is seen as some sort of hero.
A sequel to the movie was scheduled for release earlier this month, but has been inexplicably delayed.
The clinic also make heavy use of patient testimonials.
Is that the way legitimate medical practitioners promote their treatments?
No. It really isn't. There are no legitimate medical practitioners who use movies and patient testimonials as a means of promoting their treatments. That is the stuff of quackery. Information on legitimate medical treatments is disseminated through publication of well designed clinical trials in the peer-reviewed medical literature.
So has Burzynski published his data?
But there's a great long list of publications on the Burzynski Clinic website?
Yes, it looks impressive to the uninitiated, for sure. But if you look closely, you'll find it's not really as impressive as it looks. Most of the publications are conference abstracts (which are far less detailed and reliable than peer-reviewed publications), preclinical studies, case reports, or review articles.
What is notably lacking from this list is data from actual clinical trials.
Has Burzynski done clinical trials of antineoplastons?
Good question. According to clinicaltrials.gov, he has registered 61 clinical trials with antineoplastons.
Great! Where can I see the results of these trials?
Ah, that's where it gets tricky. You can't. Although Burzynski has registered 61 trials, he hasn't been so great at updating the records, so we don't really know what has happened to those trials. Most of them have a status of “unknown”. Only one of them is recorded as being completed. And that study has not been published.
So does that mean Burzynski hasn't published any clinical trial results in peer-reviewed journals at all?
Pretty much. There is one publication from 2006 in which he reports data on 18 patients cobbled together from 4 different clinical trials. 15 of those 18 patients died.
But he has never published the results of a single completed clinical trial in a peer-reviewed medical journal.
Why hasn't he published the results of his clinical trials?
That's a good question. We can only speculate. Maybe, despite over
3 4 decades of research, he still hasn't manged to finish any trials, and so doesn't have any data to publish. But there is a story told by supporters of Burzynski (and seemingly endorsed by a researcher at the clinic) that Burzynski would dearly love to publish his trials in mainstream journals, but has been prevented from doing so by a giant worldwide conspiracy. The theory goes that Burzynski is such a threat to the “Cancer Industry” that THEY need to suppress him, so they have teamed up with pretty much every medical journal in the world to make sure he can't publish.
A giant, worldwide conspiracy? How likely is that?
Not very likely. I'd say it's somewhat less likely than the theory that NASA faked the moon landings. For the NASA moon hoax conspiracy to be successful, only a few thousand people mostly based in one country would have to be in on it. For a worldwide conspiracy consisting of all pharmaceutical companies, all oncologists, all government agencies, and all medical journals to work, rather more organisation would be required.
To be fair, though, I think it's at least as likely as the theory that the Duke of Edinburgh teamed up with Elvis and Lee Harvey Oswald's accomplice to bump off Princess Diana.
Is there actually a legitimate reason why he might not have been able to publish his trials?
Possibly. Maybe his trials are of such poor quality that no reputable journal would touch them. Maybe his trials violate generally accepted ethical standards, which would also mean that no reputable journal would publish them. This is pure speculation though: there is no reliable evidence that Burzynski has even tried to publish his studies.
And in any case, it's not terribly important. Whatever the reasons, the fact remains that there is no evidence from well-designed clinical trials that antineoplastons are effective.
But even if he genuinely couldn't publish his trials, he could still post his results on clinicaltrials.gov, couldn't he?
Yes, he absolutely could. You don't need approval from any medical journal editor to do that.
So why hasn't he posted any results on clinicaltrials.gov?
That has never been explained. It's almost as if he has something to hide, isn't it?
But I've heard that Japanese researchers have also done trials which prove that antineoplastons work?
Japanese researchers have indeed done some work with antineoplastons, but I'm afraid they are a very far cry from anything that could be claimed to be evidence for the efficacy of antineoplastons. Again, it's mostly poorly designed, small, uncontrolled clinical trials, case reports, and animal studies. Nothing from well designed clinical trials.
But what about all his testimonials? Look at the people he's saved! Surely people are more important than boring clinical trials?
Well, no, we really do need to look at clinical trials. Cancer is very unpredictable. Some patients with a diagnosis of imminently terminal cancer will do very well by sheer good luck. Burzynski has treated thousands of patients, and it's really no surprise if a handful of them look like they've had a “miracle cure”. What we really need to know is statistics on all the patients Burzynski has treated, not on the handful of them he wants you to know about.
And even among the patients that Burzynski has used as testimonials, sadly, many of them have since died of cancer.
Hold on, if Burzynski has made such a big thing of antineoplastons, why can I find no mention of them on the clinic website?
Another excellent question. Until recently, there was a great deal of information about antineoplastons on the Burzynski Clinic website, but it's now all vanished.
That's strange. Why was information about antineoplastons removed from the site?
Sadly, the answer is shrouded in mystery. Perhaps it could have something to do with a warning he received from the FDA, pointing out that it's illegal to promote unlicensed medicines.
So antineoplastons are not licensed medicines then?
No. To get a medicine licensed, you have to prove that it's safe and effective. Burzynski has not done that with antineoplastons.
But Burzynski doesn't only use antineoplastons, right?
Correct. He also uses conventional chemotherapy. This is a bit odd, when one of his main selling points seems to be that he uses alternative medicine and doesn't poison you with those nasty Big Pharma drugs. Some of his supporters don't seem to have noticed the problem here.
And what about the “approved, targeted therapies” mentioned on the clinic website?
What indeed. Burzynski's idea of “targeted therapies” is, shall we say, not very well developed.
But Burzynski says he is a caring doctor who wants to cure cancer?
Well he would, wouldn't he?
So really, Burzynski is just a quack, then?
So why would anyone want to go to Burzynski?
That's one of the saddest things about all this. The fact is that getting a diagnosis of terminal cancer is a pretty tough thing for anyone. While some people manage to accept it gracefully, others refuse to believe that they are really going to die, and will latch onto anything that offers them a hope of staying alive. If someone like Burzynski comes along and says he can cure them, then even if they are skeptical, they want so much to believe that it's true that it's quite likely they'll go along with it. Sadly, the hope that Burzynski offers is just false hope.
That sounds evil. Why would anyone do such a thing?
Because there's good money in it.
Edit 14 March, 7.30 am:
I'm grateful to Didymus in the comments below for correcting my original statement that Burzynski has been researching antineoplastons since the 1970s. It was actually since the 1960s. Corrections above: old text in
strikethrough, new text in bold.