Burzynski: Avoiding Empty Rhetoric

I received a reply to my last post fairly promptly. I don’t have much to add at this point. I said all I want to in my email response, which is also below. If your just catching up, it’s worth reading this and this for a bit more background.

David,

I read your latest post of my e mail to you and your ‘journalistic commentary”. In it, I am called a liar, even though I told you in great detail about my work, which I did not have to do.

You suggest I am ‘ naive about medicine”. Again, as I told you I have been involved on and off with the clinic for only six weeks, and they are one of many clients. Before that I spent 27 years as a reporter investigating government corruption. Just because someone does not know all your answers in a few days doesnt mean they are naive. I just do not want to give you bad answers.

You portrayed yourself as someone who is trying to get legitimate answers to questions. I have been willing to try to answer what I can, trying to explain that the FDA has very strict rules on what the clinic can say about investigative drugs. If I tell you the vast , vast majority of patients are not involved in clinical trials, you say that doesnt matter. If I tell you about patients who feel their lives were saved or prolonged you dismiss it as an anecdote.

Without exception you attack my answers, given without consulting anyone else, so that my sincerity at dialogue would be appreciated. I have no interest in portraying people who question the clinic as villians. So stop trying to create drama where there isn’t. I just said that people who say outrageous things will not get my attention if they want to know answers to real questions.

Pick which group you want to be in. I will not waste my time any further otherwise . I am dissapointed that my efforts to talk to you ‘journalist to journalist’ have been met with such hostility.

Wayne Dolcefino

My reply is below. I look forward to his response.

Good morning Wayne,

Lets cover your first point and get it out of the way. When you emailed the Merritt’s you said, “Dr. Burzynskis office has retained my company to assist them in establishing, how should I say it, more mature conversations with people who have issues with the clinic.” You then said to me, “Without seeking prior approval I contacted the Merritts because I was intrigued by their blog.” Now, these statements do not marry up. Either you contacted them without prior approval and were therefore lying to the Merritt’s about having been instructed by the clinic. Or you had been instructed by the clinic, as you said to the Merritt’s and you mislead me about doing it off your own back. As it was you who brought this up again, I’d be interested in an accurate clarification. If you feel my logic is wrong, please explain how so I can understand.

That said, this is an irrelevance. It is not important to the actual topic at hand.

I did suggest that you are naive about medicine. This isn’t to be viewed as a negative or an insult. It’s a fact that you yourself have agreed with. You have said numerous times that you’re “not a medical man”, that’s fine! The dictionary definition of naive is, “having or showing a lack of experience or information”. As you say, you’ve only worked for the clinic on and off, for 6 weeks. You are currently naive on this topic. My suggestion would be for you to actually put the many questions I’ve asked you to Dr. Burzyński.

Better still, I am willing to speak to Dr. Burzyński directly, if you feel this is something that could be arranged? Whether this be in a conference call, so that he could mediate his answers through you, would be equally acceptable. Like you have said, I have raised many questions that you are not yet able to answer, this would be a good solution.

Not for the first time I agree with you that the FDA do have strict guidelines about details clinics can release regarding Investigative New Drugs (IND’s). These guidelines do not cover medical facilities being unable to give details of planned publication time frames. This would normally be expected if they were serious about publication.

Let me explain again why patients surviving without any clinical data is anecdotal. If the patients are NOT in the clinical trails they are NOT supposed to be receiving Antineoplaston treatments. ANP’s are only agreed to as a clinical study drug. So, if the patients are not in the trials, they aren’t receiving ANP therapy and are therefore receiving conventional treatments. These are tried and tested treatments. The sorts used in every hospital around the world. While I’m pleased that these patients are being treated and surviving, it has nothing to do with the trial patients that were treated with ANP’s.

As a side point, If you are aware of patients receiving ANP outside of a trail situation, you have a duty to report this to the FDA.

The reports of cure or reduction in tumour size by patients on ANP only are anecdotal because there is no data to support the efficacy of ANPs. If proper, randomised, double blinded trial data had been published over the years, we would be having a very different discussion. You and I would not be in a debate, we would have the relevant data.

I completely refute your assertion that I have attacked your answers. I have either explained why your answers are not relevant because they lacked the relevant information previously required or asked you more questions.

I appreciate that you replied to my email and I understand that it wasn’t with all the relevant details to hand, but if we’re going to have a meaningful dialogue, you have to be able to answer the questions I’ve asked you. I am happy to wait for you to contact the Clinic with my questions so that you can answer in an informed and detailed way. I don’t want this to end in empty rhetoric without us achieving our mutual aim of open and honest communication.

I again make my offer to speak with Dr. Burzyński directly.

I am disappointed that you feel you have been attacked. I am not interested in offending you. I just want answers to the questions of so many.

Kind Regards,

David James

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8 Responses

  1. Andy says:

    “I have been involved on and off with the clinic for only six weeks, and they are one of many clients”

    Given this, I have to wonder how Wayne is in any position to enter into “more mature conversations with people who have issues with the clinic.”

    What questions can he answer for them? How can he assist them?

    I have no idea which side is right in this “debate”, Burzynski or “the bloggers”, but I’d like to know if Wayne is even open to the possibility that information he’s receiving from the clinic might be less than accurate.

  2. Lynne says:

    I should clarify, I hope that Mr Dolcefino will make a real study with sources outside of the Burzynski Clinic.

  3. Lynne says:

    I have a glimmer of hope that Mr Dolcefino, as a seasoned journalist, will do his due diligence and make a real study of the complexities of clinical trials, and how the FDA actually works. That he will ask honest questions, such as why there is a worldwide consensus among scientists and doctors who know anything about the subject, that something is not right at the Burzynski Clinic. That he will be the mechanism to answer the legitimate questions they have been asking for years.

    Maybe that’s too much to expect, but one can hope.

  4. Marc Stephens Is Insane says:

    (Cross-posted from Orac’s site)

    Here’s something else I don’t understand. Maybe Wayne can elucidate.

    As we all know from the clinic’s own website, all donations are made out directly to Count Stan. When this was mentioned on Twitter, the response from @BurzynskiSaves was “As we’ve told you a thousand times, that’s the legal name of the clinic.”

    But this is what the website says, below. How can that be the legal name? I’d understand if cheques were made out to BRI, or SRB Research, or some other corporate name. I doubt if @BurznyskiSaves even realizes what we’re talking about or has looked at this page from the clinic website:

    The Burzynski Clinic accepts monetary dontations toward the continuation of the Clinical Trials and Research. You donate by check or Money Order payable to: S.R.Burzynski, M.D., Ph.D. Please note that donations are not tax deductible.

    How can S.R. Burzynski, M.D., Ph.D. be a legal company name?

  5. Lawrence says:

    @David – thanks again for “taking one for the team” (sorry, it was a good use of the term, as I just used it over at Orac’s blog too).

    If he’s the PR guy, with little knowledge of actual medicine, he’ll be reliant on the staff of the clinic to feed him the answers – interesting that those answers seem to differ vastly from the information that has been made public up to this point (that the vast majority of Stan’s patients aren’t part of the clinical trials is a huge admission – that either ANPs are being used illegally or patient’s are the victims of fraud, or both).

    I’ll be interested to see what kind of narrative he’s trying to pull together here – because there are more than a few (in fact, numerous) legitimate questions about the operation of the clinic, the finances, Dr. B’s involvement in patient care (given the recent TMB case & how Stan got off the hook), the unpublished data, the applications for clinical trials (were they legitimate or opened for individual patients to bend the FDA rules), the “real” status of the clinic trials (closed or not), and where is the data?

    That’s just the few I could think of off the top of my head…..I would be very interested to hear the answers or the attempted answers – because there is a very fine line here between PR & helping to cover up massive fraud.

  6. Adam Jacobs says:

    “If I tell you the vast , vast majority of patients are not involved in clinical trials”

    Well, that’s quite an admission, isn’t it? Burzynski is only legally allowed to use ANPs as part of clinical trials, as far as I understand.

    So, we have 3 possible explanations:

    1. I’m wrong about ANPs being only permitted as part of a clinical trial. While I can’t rule that out, I have read about all this fairly extensively, so I don’t think it’s likely.

    2. The vast, vast majority of patients are actually just getting treatment that they could get from any legitimate oncologist. In which case, you have to wonder what the point of Burzynski is.

    3. With the vast, vast majority of patients, Burzynski is breaking the law.

    So, Wayne, if you’re reading this, perhaps you could let me know which of those options is correct?

    • David says:

      I did cover this point in my email to Wayne. As far as I understand, (and like you, I’m fairly well read on this) ANP therapy is a trial approved drug treatment only.

      It is important to remember that Wayne is fairly new to all this. As he has mentioned on a few occasions, he’s not a medical man. But there is the issue. While I’m grateful for his responses, we will never get anywhere meaningful until he understands the inner working of the science. I hope when he does, he’ll realise for his own sake and reputation, that an association with the clinic is a bad move.

      I await his reply…

  1. February 24, 2013

    […] get the chance to read it until a few hours ago. This follows on from my posts from the 18th (Avoiding empty rhetoric) and the 17th (Dolcefino confirms business relationship). I’ve had an interesting back and […]

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