Burzynski: Dolcefino – Intellectual Dishonesty & The Shifting Sands of Burden

As has become the custom, Wayne has replied to the last post in this series, via email. It’s worth reminding yourself of the last post and the one previous to that. I’ve been accustom to breaking his emails apart. This makes is easier for me to reply to his points and I hope easier for you to see how I address them.

I’ve not done that this time and I’ll explain why after you’ve read his latest email.

I read your commentary on the questions I answered for you. So there is no confusion, my job is not to tell you what you obviously want to hear, but to tell you what the clinics answers to your questions are.

You asked about insurance covering treatment at the Burzynski clinic. Despite my answer you make the following statement to your readers.

‘Almost no insurance company covers treatment offered by the Burzyński Clinic’.

When I see the word ‘ almost’ I see a recognition that in fact some insurance companies do cover treatment. I didn’t provide a guarantee, and I told you the clinic would help patients who requested it to communicate with their insurance companies. In this country, any one deciding on a treatment, or a surgery, should evaluate how their insurance company will cover it, if at all. I know it pains you, but let us agree that some insurance companies cover related costs and leave it at that.

You also continue to focus on clinical trials, when I have told you, more than once, that the vast majority of patients at the clinic are NOT involved in clinical trials. That is why I suggested we focus on the clinical trial.

You asked me about HIV even though you knew the answer, and just wanted to use my accurate response to bring up some old dispute the clinic had with the medical board. In the interest of fairness, you should also tell your readers that the Texas Medical Board has dismissed it’s only complaint, and that your readers can examine Dr. Burzynski and fellow physicians records for themselves . In Texas , patients can see if a doctor has ANY malpractice claims in recent years. Check it out. Report it.

The clinic is busy analyzing data, seeking publishing, and abiding my recommendations from the FDA that it does not discuss the results of its clinical trials. If you get written permission from the FDA to do otherwise, please let me know, and I will ask the clinic to respond.

I am sorry you feel our week long relationship is at an impasse. I have responded to every question you asked, and I am getting the impression you are getting frustrated because the answers do not fit your agenda. Can’t help you.

Wayne

Wayne is right, I am frustrated. But not for the reasons he would like to imagine. Wayne has ignored or just not responded to my counterpoints in my previous posts. He continues in his refusal to acknowledge my honest and comprehensive approach to many matters because they introduce an adverse effect, either to him personally or in his professional capacity. This is intellectually dishonest and shows a failure to apply any standard of rational evaluation. It saddens me that this well known local celebrity appears to have put his professional allegiances ahead of his moral and journalistic ones.

Also, he has continued to shift the burden of evidence to me. This is a failure in basic logic and underlines the ideological approach being taken. I have on two separate occasions explained to Wayne the FDA rules regarding information about trials. Also, if the clinic were so interested in making their data available, they would have contacted the FDA regarding this themselves. This is not my responsibility.

You’ll also note that a made a concession regarding insurance coverage. This was as a matter of honesty. I was unable to say with any certainty that there are no insurance companies that cover any part of any bills from the Burzyński Clinic. My honesty was completely picked apart as an admission of my inaccuracies, but completely missed the actually point of the initial question. Patients have repeatedly been deceived about costs and insurance coverage. I implore you to read the cases listed on The Other Burzyński Patient Group’s website. Read the words of patients of the clinic and about insurance and drugs added to their prescriptions.

Its seems clear that Wayne has been tasked with ignoring the past and only talking about the present and future. While the clinic continues to pursue an unproven alternative modality, based on over 30 years of anecdote and feeble data, the past will not go away. Patients and perspective patients continue to be at risk.

As Wayne has shown a clear inability towards an open dialogue, I see no further value in talking with him.

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13 Responses

  1. lurkingabout says:

    David, thank you for putting so much of your time into attempting meaningful communication with Wayne Dolcefino. I would hope Wayne could take a deep breath and contemplate what is being reasonably asked and continue the dialogue.

    I only fear that Wayne cannot possibly be impartial from this point onward, if he ever was at all. I still do not understand exactly what his role is with the Burzynski clinic, beyond a public spokesperson for Burzynski. I’d be willing to overlook Wayne’s less than helpful answers if for nothing else than he learn more about the clinic, in which to adequately answer questions. Even so, how can bias, conflict of interest not enter the picture?

  2. Lawrence says:

    @Wayne – I do hope that all of the clinical results will be forthcoming, because I do hope that we (as a collective, skeptical community) are wrong, that Dr. B’s treatments are actually effective and offer hope to those who otherwise would not…..because if they aren’t and it does turn out to be very much like we have surmised, then the clinic is going to have a lot to answer for.

    As a personal aside – have you asked the hard questions during the time at the clinic? Have you confirmed the details published regarding patient stories on “The Other Burzynski Patient Group?”

    Can you understand why we would feel the way that we feel, given the lack of actual evidence and concrete information that has been released over the last couple of decades? How about the lack of any real peer-review done on any of Burzynski’s treatments (not just ANPs, but his supposed “targeted” Cancer therapies)?

    Since you were an investigative reporter, I’m very interested to understand what led you to set aside your natural skepticism in this case.

  3. MedTek says:

    Rob- this suggests that the “vast majority” of Burzynski’s patients are treated with his interpretation of “gene targeted therapy”, which appears to be a cocktail of conventional chemo used off-label, and which always seems to include Burzynski’s own formulation of Sodium Phenylbutrate (PB), dispensed presumably from his own pharmacy, at inflated prices. I am given from various patient accounts that Burzynski’s formulation of PB is somehow “different” which is why it must be obtained directly from him.

    As a Houstonian (displaced), I am so very disappointed (but not really surprised) in Wayne’s involvement with the clinic.

  4. David says:

    Recommended reading on the SEC comment made by Wayne is this post on the 21st floor – thetwentyfirstfloor.com/?p=7813

  5. Rob says:

    I do not understand this:

    “the vast majority of patients at the clinic are NOT involved in clinical trials”

    But by FDA rule and the Clinic’s own statements (about how antineoplastons are approved for FDA-sanctioned clinical trials) patients can only be prescribed antineoplastons as part of a clinical trial. I would welcome clarification.

  6. If, as he has suggested, Wayne wants to establish more mature conversations with those who have issues with the clinic, perhaps he would like to consider some of the main concerns we have, rather than getting distracted with issues such as insurance.

    I’ll list the main ones that come to my mind, off the top of my head (though other people may have more to add).

    The Burzynski Clinic has been:

    – Using an treatment for over 35 years without meaningful published data on efficacy and safety.

    -Running large numbers of clinical trials without publishing data from those trials.

    -Charging patients to take part in clinical trials.

    -Sending out misleading information to prospective patients on the safety and efficacy of a treatment which is still considered new and investigational (information which is sometimes then reported in the press, effectively promoting the clinic).

    -Recommending dubious, misleading and unreliable websites to patients (such as the Burzynski Patient Group and Burzynski Movie sites, which give the impression that antineoplastons have been established to be safe and effective and the findings have suppressed).

    It is also an eponymous cancer clinic run by someone who is not an oncologist.

    Furthermore, there is a concern that Dr Burzynski and the Burzynski Clinic may also be giving patients false optimism concerning their prognoses. For example, there have been several instances where it seems Dr Burzynski or his staff have misread or misinterpreted MRI scans. Of course, we don’t know what the extent of this might be, but it is certainly a concern.

  7. Adam Jacobs says:

    Ah, Wayne, good of you to join us in the comments. You seem to think you are up to answering questions. I have one or two I’d like to ask you myself. Are you up for that?

  8. Adam Jacobs says:

    I think it’s rather telling that Wayne chooses to focus on the rather peripheral point about insurance cover. While there are some mildly interesting things to say about insurance cover, it’s really a long way from being the most important thing here. I sense that Wayne is focussing on insurance to distract from the really important issue.

    The really important issue, of course, is that despite over 3 decades of so-called “research”, Burzynski has failed to come up with any evidence whatsoever that ANPs do any good at all.

    Funny how Wayne doesn’t seem to want to talk about that so much.

  9. Stating that the majority of the patients at the clinic are not enrolled in trials is pure deflection.

    We have concerns both about the treatment of those in trials and Burzynski claims about ANPs AND his grandiose and ill founded claims about offering “personalised gene targeted therapy”.

    Clinical trials are only half the story. As regards malpractice one wonders what he makes of the Quinlan case? I saw Richard Jaffes response to that and it was somewhat chilling. It was also interesting that the defence used by Burzynski to avoid prosecution in the Quinlan case was entirely different from the reasons offered by Jaffa as to why she had no case.

  10. So let all who read your post get this straight. You ask questions. I answer them. I tell you there are some insurance companies who cover some costs . Without any evidence to the contrary, you suggest otherwise, then admit you do not know. Then you say it is up to the clinic do publish it’s final results, which they want to do, ignoring the fact there are public SEC filings of interim data on 14 clinical trials available for you to analyze. But instead of doing that, you suggest I have an inability towards open dialogue. For the record, noone is instructing me how to communicate with you. You asked questions. I answered. Patients at any medical facility should know about costs, what their insurance company covers before they go. I do. Sorry you feel your time has wasted. Actually, I have learned alot from our back and forth.

    Wayne

  1. February 28, 2013

    […] Dolcefino has been engaged in a discussion over on the East England Skeptical Society blog with David James regarding the Burzynski clinic. Both sides currently seem very frustrated with […]

  2. February 28, 2013

    […] In a comment on a later post by David James, referring to a more recent email exchange, Dolcefino wrote: […]

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