Why hasn’t Burzynski published his trials?

I’ve written before about the Burzynski Clinic. Just to refresh your memory, it’s a clinic based in Texas that claims to have a remarkably effective treatment for cancer, antineoplastons. The marketing of the clinic is based on the idea that Burzynski is a maverick lone researcher who has discovered the cure for cancer, but the medical establishment don’t want you to know about it because it would threaten their business model. I’m never entirely clear whether the medical establishment are acting on their own or in collaboration with our Lizard Overlords, but you get the idea.

That probably sounds like a crazy enough conspiracy theory on its own, even before I tell you that Dr Burzynski has form for fraud. If you want to catch up with my previous posts about the Burzynski Clinic, you can read them here, here, and here.

One of the obvious red flags of quackery that alerts us to the likelihood that Burzynski’s treatment is worthless is his lack of publications. He has registered 61 clinical trials of antineoplaston treatment, and yet I can only find one of them with published results (and even in that study, most of the patients died). What happened in the other 60 studies? We can only guess, as the results have not been published.

So why hasn’t he published the results of the other 60 studies?

There are a number of possibilities. One possibility is that the results were dreadful and show that antineoplastons are not only worthless, but positively harmful. If that’s true, and if Burzynski is more concerned with making money than with ethics, then perhaps he chooses not to publish in the hope that potential customers will not learn the truth about antineoplastons.

Another possibility is that the results show that antineoplastons are wonderfully effective, but he’s worried that if he publishes the results, other people will start using them and it will hurt his business model. That wouldn’t be very ethical. It wouldn’t even be very good business sense. If antineoplastons were effective, I imagine he could do some licensing deal with one of the big pharma companies that would make him far more money than he could ever hope to make at his own clinic.

Supporters of Burzynski reject both those possibilities, of course, and propose a third. Part of the conspiracy theory mythology is that Burzynski has repeatedly tried to publish his results, but his attempts have been suppressed by the Lizard Overlords Big Pharma.

On the face of it, that sounds highly implausible and nothing but part of a crazy conspiracy theory.

But I’ve been thinking a bit more about this, and it’s occurred to me that there just might be a grain of truth in it.

I’m not suggesting there is some grand conspiracy in which Big Pharma pay off the journals to reject his papers, of course. But maybe medical journals really do routinely reject his papers.

Why?

Well, there are widely accepted ethical standards that have to be followed in clinical research. The best known codification of these standards is the Declaration of Helsinki. Among other things, these standards require that clinical trials must follow a pre-specified protocol which has been approved by an independent ethics committee, and that patients taking part in the trials must have given informed consent. That consent must be based on a clear explanation of what happens in the trial and be freely given.

Most respectable medical journals require that those standards have been met, and refuse to publish papers based on research that did not conform to those standards.

Is it possible that this is the reason why Burzynski’s research has not been published? Certainly, his ethics have come into question in the past. The FDA found that the Institutional Review Board tasked with approving his studies was not following appropriate procedures. Burzynski is currently facing legal action from a former patient who alleges, among other things, that she was entered in a clinical trial without her knowledge. If true, that’s an extremely serious breach of medical ethics.

Taking all this together, it does seem plausible that Burzynski might have submitted many more trials for publication than we know about, but that the papers were rejected because the trials did not conform to accepted ethical standards.

I should point out that this is pure speculation. I have no evidence that Burzynski has had papers rejected for this reason. Nonetheless, it is a familiar refrain of Burzynski’s supporters that he’s repeatedly tried to publish his results and been repeatedly rejected. That’s quite possibly conspiracy theory nonsense of course, but it just could be true if the journals who received the submitted papers realised that the trials did not follow accepted ethical standards.

Does anyone out there have any more information? Is there any evidence that Burzynski has submitted papers that have been rejected, other than the bluster of conspiracy theorists? Please let me know via the comments form below if you can shed any light on any of this.

 

 

About the author

Adam Jacobs

set up Dianthus Medical in 1999. He is an experienced medical writer and statistician, has a PhD in organic chemistry from the University of Cambridge and an MSc in medical statistics from the London School of Hygiene and Tropical Medicine. You can follow him on Twitter @dianthusmed

12 responses to "Why hasn’t Burzynski published his trials?"

  1. frozenwarnings

    While it’s possible that he has submitted papers and been rejected (though he hasn’t complained about it and his supporters only seem to have mentioned it after a sceptic raised the possibility), there are many low quality altmed journals out there that aren’t so worried about ethics/study design/science, that he’s not been shy of using in the past, that he could use for free advertising. For that reason I’m not convinced by the blocking defence, I think he doesn’t publish because the truth is his “treatment” doesn’t work and he doesn’t want anyone to put it under any scrutiny.

    • Ben Hymas

      ” I think he doesn’t publish because the truth is his “treatment” doesn’t work and he doesn’t want anyone to put it under any scrutiny.”

      For a medical person and skeptic so concerned with”Data” I’m surprised that you have come to this conclusion based on zero data.

      The whole idea about Fake patients was brought up by a Skeptic and now as sick an idea as that is it seems to be now considered “fact” – there is NO evidence there are any fake patients, including my fiancée who has been directly called a fake patient.

      We are open to answering questions but no one asks. Perhaps if there is zero chance in your eyes this antineoplaston treatment works you’d like to tell me how my fiancées grade 4 Glioblastoma (the worst CNS cancer out there) is shrinking continuously out of the normal pattern of the disease? And please don’t throw “spontaneous remission” at mebecause I very much doubt you will find any cases of GBM spontaneous remission in the history of this disease anywhere.

      “but you have a lot invested in this miracle and would probably rather not think about it”. …. Please don’t insult my intelligence or make any assumptions about our decision just because you don’t personally think it is the right one. You’re assuming we are like rabbits in the headlights clinching onto false hope, couldn’t be more far from the truth.

  2. Ben Hymas

    Just to let you know, my partner was given informed consent and told exaclty what trial she was participating in, the details of which are laid out in a dossier which we were taken through paragraph by
    Paragraph. Everything from the moment we arrived at the clinic was explained. I would actually say the informed consent and oral explanations were much more detailed than anything we received from my partners NHS oncology experience.

    You’re right, I think all anyone on both camps wants is the truth, hence me adding my comment. A number of people who have been treated or are currently being treated at the Burzynski clinic that we know also have no issues with informed consent.

    Best regards,
    Ben

  3. frozenwarnings

    You’re right, everyone wants the truth. That truth can only come by Burzynski proving his therapy works better then other treatments, and safely. He can only do that by publishing his results in peer reviewed journals so that they can be scrutinised by scientists and oncologists and his methods replicated. That is how science and medicine progress. It does not matter how many patients he has defending him ( and it’s not actually that many considering the number he claims to have cured). The fact that he has not done this for 30 years is scandalous. I think you know this, and are as perplexed by his refusal as we sceptics are, but you have a lot invested in this miracle and would probably rather not think about it, I understand that. It doesn’t make what he is doing ethical though.

  4. frozenwarnings

    “For a medical person and skeptic so concerned with”Data” I’m surprised that you have come to this conclusion based on zero data.”

    Can you think of any other logical explanation as to why Burzynski has not shared his data? The only logical conclusion is that he is hiding something. I keep asking and none of you reply.

    If his treatment doesn’t work then he is hiding the fact and conning terminally ill patients.

    If it does work, he is keeping it from millions of cancer patients. Both are utterly wrong and unethical. Which is it?

    Where have I mentioned fake patients? Please don’t make things up.

    You are the second patient’s relative to say “we are open to questions but no-one asks” but whenever questions are asked no answer ever comes, not even “which trial are you on?”.

    In any case, and I can’t stress this enough, it isn’t up to patients to answer questions, it is Burzynski’s job.

    I am genuinely happy for you if your fiancee’s tumour really is shrinking, and I hope it continues, but there is no evidence that if it is, that it’s anything to do with antineoplastons as he likes to call them. That is what he needs to prove, that it’s not misread scans, or late effects of previous treatment, or misdiagnosis or a range of other things including the sheer weirdness of tumour behaviour. That is why Phase 3 studies are needed and results need to be published.

    One thing that does irritate me is this “you don’t know what you’re talking about unless you’ve been in our shoes” because it has no merit. For a start, you assume too much when you think no-one else has been through it, which isn’t true in a lot of cases, and secondly, this is about science and medicine, not personal experience, which is why many are angry that Burzynski, instead of publishing his results, uses sick people as advertising fodder.

    You’ll find lots of people who claim to have been cured of all sorts of things by all sorts of fake medicine from baking soda to homeopathy to drinking bleach. It’s not how you prove a medicine works.

    If you are as well informed as you say, you must know there is something amiss here. However, no-one is trying to take away your freedom of choice. That choice must be truly informed though, and at the moment it isn’t. no matter how much you protest, it simply isn’t. If, after knowing all the facts, you still choose that path, no-one is going to stop you.

    • Ben Hymas

      “I am genuinely happy for you if your fiancee’s tumour really is shrinking, and I hope it continues, but there is no evidence that if it is, that it’s anything to do with antineoplastons as he likes to call them. That is what he needs to prove, that it’s not misread scans, or late effects of previous treatment, or misdiagnosis or a range of other things including the sheer weirdness of tumour behaviour. That is why Phase 3 studies are needed and results need to be published.”

      Firstly my partners oncologist who I suggest knows more about her case than yourself, attributes the tumour shrinkage to Antineoplastons, secondly as we have always noted on our website my partners scans are independently reported every time she has one. These reports always have the same conclusion. As for mis diagnosis, Kings aren’t in the habit of misdiagnosing giant cell GBM, nor are an independent very well known lab in Arizona.

      “One thing that does irritate me is this “you don’t know what you’re talking about unless you’ve been in our shoes” because it has no merit.”

      Please tell me where I said that? I didn’t say that at all so don’t put words in my mouth.

      “but you have a lot invested in this miracle and would probably rather not think about it”.

      YOU are assuming we are clinging onto false hope and ignoring anything negative. we are satisfied with our experience. My partner has the most agressive malignancy known to man, was given 6-12 months last June after Radiaiton failed (which was all she was able to have, worsening her prognosis) had a paralysed arm and extremely bad epilepsy due to the tumour. Somce increasing her dose of antineoplastons She now has virtually no cancer left, a completely resolved fully able arm and hardly any epileptic episodes now. Please tell me where we are going wrong, or if he is “hiding expensive chemo” in her antineoplastons then please tell me what it is so we can share it with the world and please show me the bill because he doesn’t seem to be charging us for any medicine at all!

      • frozenwarnings

        Ben, I’m really not interested in discussing your partner’s illness for a couple of reasons.

        1. What I would say would likely upset you and I have no wish to do that. You are optimistic by all accounts and your doctors are not going to deny you that, because there is no point at this stage. I could go on about deliberate over reading of scans but again, there is no point, because you have made your decision and you can’t go back on it now. At no point did I suggest YOUR doctors had misdiagnosed. I didn’t say that at all so don’t put words in my mouth. It was one of several possible reasons that Burzynski has raised red flags with the medical and scientific community.

        2. Individual patient testimonies, and I don’t know how many times we have repeated this, are meaningless. It is the way all fraudsters and quacks sell their treatment, bypassing rigorous scrutiny. I’ll give you an example. There is a child that certain people have been using to advertise Burzynski’s miracle cure. Aside from the fact that the poor child isn’t cured at all, and his tumour has simply followed the natural course for that kind of tumour, his parents gave him homeopathic “cancer treatment” i.e. water, and a treatment that some randon guy insists was passed down to him by god in a dream. Yet those parents, in their desperation, think Burzynski has got some miracle cure that worked for them. Do you think that is comparable with publication and peer review so that other doctors and scientists can evaluate treatment? Not. Even. Close.

        Interesting that you say you are not being charged by Burzynski? Do you mean he is not charging for the drugs themselves but is charging an arm and a leg for “training” and consumables? Or are you getting completely free treatment in return for something? I ask because it’s patently obvious people are paying large amounts of money for it. Also, to deny that Burzynski uses chemo is a bit silly. You know he does. The idea of his treatment being “natural” and “non toxic” is marketing bullshit.

        Now, I know you’re not going to address any of the questions, because you don’t care, you think he’s a maverick genius. I think he’s a conman, but I’m quite willing to change my mind if evidence is produced. None has been forthcoming so far. It just looks more and more dodgy the more I see.

        Answer me this though, if nothing else. Let’s assume for one minute that he is onto something and “antineoplastons” cure some cancers. Why do you think he refuses to share this miracle? Do you not think that would be utterly immoral? Don’t tell me he can’t afford to do trials like “Big Pharma”. He is Pharma, whether you like it or not. He has money, he has patients, he has been DOING trials for 30 years, he has permission for a seemingly never starting Phase III. Yet he refuses to allow other to benefit, do you not find that odd? Some of his fans will say “but people just want to steal his ideas!” Course we both know that’s bollocks, no-one with an ounce of decency would keep a cancer cure to themselves.

        There are only two possible conclusions. He has a cure and is keeping it from the world, or he has naff all and is conning desperate people out of theirs and other people’s money.

  5. I don’t understand: lots of money has been raised for Laura Hymas’s treatment with Burzynski, but now I read that they are not being charged by Burzynski. But where has all the donated money gone to then?

  6. Pingback: Science-Based Medicine » Dr. Stanislaw Burzynski’s cancer “success” stories

  7. Pingback: Science-Based Medicine » Dr. Stanislaw Burzynski's cancer …

  8. Pingback: Burzynski Q&A | Dianthus Medical