This is a case where I was convinced that a particular alternative cancer treatment was legit, until I dug further.
I went to see a controversial documentary about alternative cancer treatments last week at the Newport Beach Film Festival in southern California. The title of the film was Burzynski: Cancer is Big Business, Part II. The invite was from David Ggorski, oncologist and editor from http://www.sciencebasedmedicine.org, which is a very reliable skeptics page. (see below)
The film was a bit long at 1:45, but both my wife and I we convinced that after seeing the documentary, we we ‘converted’ to believers, There was a Q&A afterward with the director and several surviving cancer patients, along with the long-winded…… hold on now…. FABIO! and he looks just as good as he did in the 80′s.
We expected to see a film that showed how Dr Burzynski, who operates a cancer clinic in Texas, was a ‘quack’. (http://www.burzynskiclinic.com/) But the film was overwhelmingly in support of Burzynski, and was critical of the FDA “refusing” to allow his work to continue with is antineoplastons in conjunction with ‘personal’ therapies after decoding a patients DNA.
The film, directed by Eric Merola, was very well done, with numerous testimonials and the problems of the NHS (Briton’s National Health Service) withdrawing financial support and health care if a cancer patient goes to see Burzynski’s clinic, and how the FDA has refused to let Burzynki continue with phase II studies, and how the FDA had ‘raided’ his clinic, only to find valid testing protocols. The film even had a very convincing doctor from Japan, Dr. Tsuda, who spoke of a 27 year study of Burzynski’s treatments done in Japan under strict supervision. Especially convincing was Tsuda’s common pro-skeptic phrases like “we should always have doubt” and “until we see scientific evidence”. The movie also had several very negative comment about those horrible ‘skeptics” who ‘threatened the clinic” and have “locked up Burzynski’s Wikipedia page” as well as mean and very rough language about Burzynci’s unscientific and untested methods on several blogs. This was not the type of skeptical behavior I see from those in the skeptical movement, but there is was on the big screen. Those skeptics were mean and evil people. How can those skeptics say that after so many people were cured? The documentary showed MRI scan of cancerous growths decreasing and even being eliminated. This for sure was evidence that is treatments worked….right??
By the end of the movie I was a convert. I even stood up at the beginning of the Q&A and said the malevolent skeptics in the movie were not part of the general skeptical movement, were probably on the fridge area and a minority of how the movement behaves. I even said I will recommend the movie to my 1000 Backyard Skeptic members (the largest skeptics/atheist group in southern California). I spoke too soon……
Actually I do recommend the movie now, not because I think the doctors methods are proven, but to show how even an avid and passionate skeptic can be converted if the skeptic doesn’t use those tried and true methods of critical thinking, not believing everything one sees and hers no matter how convincing it is, and researching the other side before opening one’s big mouth in from of a majority crowd of ‘believers’. One mad who was on the Q&A panel applauded me, as did the audience, and wanted to talk after the panel was finished (I had to leave before it finished).
Word quickly got around the Burzynski had a skeptic leader that was converted. Soon I received several well written emails from two scientists, David Gorski from Science Based Medicine, who is a cancer surgeon and researcher, molecular biologist, and has taken an interest in genomics and personalized, gene-targeted therapy, and from pshycolohgist Keir Liddle of Scotland, both who were polite and informative. Both quoted many articles and websites concerning Burzynski’s methods. I’ve included some correspondence below.
Lesson to be learned here: Stick with the critical thinking skills we all promote. Always view both sides before rendering an opinion. find the scientific consensus of those in the specialized field. and be a ‘good’ skeptic.
Here is David’s correspondence with me with all the links concerning Burzynski
Bruce,I am familiar with much of what is in the second movie from various sources, but I have not seen it yet, although I have seen the first Burzynski movie. There are at least five major misconceptions being promoted in the second movie, along with patient testimonials that seem convincing superficially but when dissected in more detail by someone knowledgeable like cancer (such as myself) are not:http://www.sciencebasedmedicine.org/index.php/burzynski-cancer-is-a-serious-business-part-2-like-the-first-burzynski-movie-only-more-so(Please pay particular attention to my discussion of myth #3, where I talk about the clinical trial issue.) I discuss the Japanese studies in myth #4, but a better discussion can be found here:In any case, it is a huge deal that Dr. Tsuda and his group have not published their results yet. Until they do, it is impossible to judge whether their methodology is sound. I do know that this is a trial testing intra-arterial infusion of 5-FU plus or minus antineoplastons. So it is a chemotherapy-based regimen. Without being able to look at the randomization, the statistics, how the trial was set up, etc., it’s impossible to tell whether this trial actually shows what Dr. Tsuda says it shows. As a scientist, I cannot comment one way or the other on it very much until it is actually published. I can, however, point out that it is highly dubious to tout results like this before they are published. The bottom line: I don’t believe it. My mind can be changed by data from a well-designed clinical trial, but right now it’s not particularly convincing evidence. Certainly nothing the Japanese group has published prior to now is particularly convincing, either.There is also a lot of obvious conspiracy-mongering in both the movie and the Q&A. Now, I don’t know what was said in the Q&A this time (perhaps you could provide us with a report), but I do know what has been in thehttp://www.sciencebasedmedicine.org/index.php/dr-stanislaw-burzynskis-cancer-success-stories-part-2/I assume that you recognized all of that for what it was, although you might not have had the background knowledge to realize why the patient stories presented are not nearly as compelling, from a scientific standpoint, as they seem. Many more such discussions can be found here:Also, I’ve also done better than just watch the movie. I’ve actually read all the peer-reviewed literature that I can on antineoplastons and Burzynski. You are impressed by the phase 2 trials. If you’re a lay person, I don’t blame you. They certainly look impressive on the surface. However, what you don’t know is that Burzynski has registered over 60 phase 1 and 2 clinical trials on ClinicalTrials.gov:However, he has not published the completed results of any of them. Oh, sure, he’s published the odd case report or tiny case series, but he has not written up a single completed phase 2 clinical trial, and many of those trials date back to the 1990s, which would be more than enough time to have published multiple studies, given the expected short survival times of the cancers involved. Why is that? The reason is simple. Back in the 1990s, when the Texas Medical Board investigated him, Burzynski ended up entering into a consent agreement:Specifically, the agreement stipulated that Burzynski:• Cannot distribute unapproved drugs in Texas• Can distribute “antineoplastons” only to patients enrolled in FDA approved clinical trials, unless or until FDA approves his drugs for sale• Cannot advertise “antineoplastons” for the treatment of cancer• Must place a disclaimer to his website, promotional material and ads stating that the safety and effectiveness of “antineoplastons” have not been establishedBurzynski’s solution to get around this was to set up dozens of phase 2 clinical trials and treat patients on them. He then charges thousands of dollars of “case management fees” that can add up to hundreds of thousands of dollars.What might be most useful are these three articles I wrote about Burzynski that review the first movie and delve into his claims:http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynskis-personalized-gene-targeted-cancer-therapy/ (this analyzes Burzynski’s “personalized gene-targeted therapy” claims)http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-antineoplastons-and-the-orphan-drug-sodium-phenyl-butyrateMerola has produced superficially convincing-sounding conspiracy theories and spun the science in a deceptive fashion, and I hope you can realize that you’ve made a mistake. That’s true skepticism. And don’t think that I don’t ask myself frequently whether Burzynski might actually be on to something? I do. That’s skepticism too. Unfortunately, Burzynski has never produced evidence that has been enough to lead me to reconsider my opinion.David
And here is Keif’s correspondence:
Just read the mentioned blog – Looks like the visuals and testimony in the movie had one over me temporarily, and it shows how effective documentaries can be (I am a director/producer of corporate and performance based (dance and theater) productions myself. My work webpage isthumbsupvideo.com.I haven’t read the other links you emailed, but my faith in Burzyinsky is fading fast.One question though – after several patients in England showed no decrease with traditional therapy, why did the cancer growths decrease to undetectible levels after Burzynsky’s treatments?Thanks for the info.Bruce GleasonBackyard SkepticsFrom KeirYeah here is the blog on the Japanese research (it comes after a lot of blogs on the subject and a lot of personal abuse so the tone might be off at some points – can’t really tell myself having written it) http://twentyfirstfloormirror.wordpress.com/2013/02/17/burzynski-the-japanese-research/I think I had another post on another paper but can’t seem to find that. Unless it was related to Chinese research on a similar chemical that was purported to be ANP derived and my wires are crossed.KeirOn Mon, Apr 29, 2013 at 4:50 PM, Keir Liddle
Funny you should mention the Japanese study. I have a blog on that somewhere. I’ll have to see if it survived the site move.
One thing worthy of note is that the Japanese studies explored ANP use as an adjunct to chemotherapy. So they weren’t really testing it as any sort of treatment on it’s own. There are some other issues (not least of all the dubious practice of naming all the patients who died in the trial in an appendix table) but I can’t recall the ins and outs right at the minute.
On balance, having looked through the publications, all the warning letters and patients blogs reporting dubious research practices and the overwhelming lack of any serious published peer reviewed research from something like 60+ trials I would say I am against his methods.