Late last night I received an email from Wayne Dolcefino. I’ve decided to publish this, in full, with my reply. I feel I covered most of the points he addressed. As you’ll see, what started off as a “quick note”, did become a much fuller response. For more detail, I recommend reading my post on Wayne Dolcefine from yesterday.
For your viewing pleasure, Wayne’s email:
On 13 Feb 2013, at 23:42, “Wayne Dolcefino” wrote:
I read your article with interest.
I see others have attempted to suggest a routine visit by the FDA to a medical research facility , which happens all the time, is somehow a big deal. I was sorry to dissapoint. It is what the FDA is supposed to do.
I notice you did not include my comments that I find it reprehensible that clinic patients are attacked by those who claim to be working in the pursuit of science. I wish you had noted that in my limited work for the Burzynski clinic I have been free to talk to patients and ask them anything. I also told you about a 7 year old girl .I talked to and her mom and dad. Her parents were told she would be dead by the age of two before she came to the clinic. She is happy and healthy five years later. Quite frankly, they deserve better than the kind of things said about their doctor.
I hope that in the weeks to come the ‘ debate ‘ as you call it would elevate to a place where patients are not attacked for their joy. I will never mind talking to mature folk, but will quickly discover who is serious and who is just vitriolic.
Perhaps you should post your e mail to me.. And so that my comment is not taken out of context… Questions about medical research and the cost of cancer treatment are always legitimate and professional areas of inquiry, regardless of the doctor. My daughter had a stomach ache and we went to the emergency rooom a few months back and for two hours the bill was 13,000 dollars. Sure, the insurance company picked up most of the tab, but it does not change the reality of health care.
It takes dozens of professionals to operate a treatment center, and sadly that is never inexpensive.
I hope you will help me elevate the discussion,
Texas sends its best.
My response was as follows. Feel free to share any points you feel I haven’t addressed with me. I have no doubt the Wayne will be back in contact at some point in the near future.
From: David James
Date: 14 February 2013 01:36:10 GMT
To: Wayne Dolcefino
Subject: Re: The Burzyński Clinic
Good Evening Wayne,
I hope you are well?
I’m very pleased that you’ve taken time to read my post.
I have made it very clear to people that have asked, that you were not only polite and open with me, but that you were also very nice.
I hope you appreciate that I haven’t taken you out of context, nor did I insinuate anything. I simply reported some of the details of our conversation as they were deemed to be in the public interest. If others have chosen to read into that, that’s their prerogative.
I did also made it clear that this wasn’t a full appraisal of our conversation. When I’m well, I will have the opportunity to fully detail our exchange (less the reference to One Direction!).
While I say that this isn’t a full appraisal of our conversation, I will specifically address your point about patients who are “attacked” by people “who claim to be working in the pursuit of science”. You will remember from our conversation that I said and I quote, “I think that dragging patients into this muddies the water and I pour scorn on any of the bloggers that choose to drag patients into it.” I have not, nor will I ever use patients or their families in that way.
I would also add and ask, I believe these people to be in the minority and I would ask for you to forward me any details of such blogs. I am happy to look into any claims that you make in this regard.
I would also like to point out that I did post the email I sent to you in my blog post. I wonder if you’re reading from a duplicated source? To be sure, my post can be found at this address: www.skeptical.gb.net
I wonder if you can help me with this question. You made a remark in our conversation that I have found out to be, to the best of my knowledge, untrue. When I asked you about the Merritts, you said you’d heard of them and read their blog. You failed to mention that, not only had you contacted them but that and I quote “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.”
Now, this strike me as an admission of retainership. Something which you denied on the phone. Do you still claim this not to be the case? Can you explain your omission about contact when we spoke?
Also, just to briefly cover your point about cost. Firstly, I’m sorry to hear your daughter was unwell. As a parent myself, I know the pains we goto to protect them. I appreciate that medical costs are high and ordinarily I may agree with you equating Dr. Burzyński in this way. However, you fail to take some very important points into consideration.
Firstly, treatments at the Burzyński Clinic aren’t picked up by any insurance companies. After more than 30 years, to my knowledge not a single insurance company helps the families pay for treatment in these trails. Even homeopathy, a thoroughly disproven treatment is covered by some insurers! Does that not strike you as a little unusual?
Secondly, the Burzyński Clinic insists on payment either in advance or at the time of treatment. Do you not find that unusual? Can you think of a reason for this? It was lucky you didn’t need to have $13,000 on you when you took your daughter in, right?
I haven’t even got to the efficacy of the treatment yet. Thirdly, your daughter will have been treated, if needed, with FDA approved drugs. The Burzyński Clinic does not do this. It makes use of a loop hole that allows for patients to be treated in trails with experimental treatments (drugs). The most famous of which is, of course, Antineoplastons. ANP is still only trial approved after 35 years of “testing” and making substantial profits off a drug that not hugely expensive to make.
Fourthly, while I agree that any medical centre that wants to pay its staff the going rate will not be cheap to run. This doesn’t explain the huge costs the Merritts and others were going to be charged for Antineoplastons, while self administering the treatment at home. I believe a figure of $8-$10,000 dollars for a months supply. Does that strike you as reasonable?
I will sum up with this. While I totally agree that patients should “never be attacked for their joy”. I am sad to report that often this joy is short lived. As one of the best investigative journalist of your generation, perhaps I can point you in the direction of “The other Burzyński Patient Group”? The website can be found at: http://theotherburzynskipatientgroup.wordpress.com/about/ . It currently lists over 30 patient cases, sadly many no longer with us and its from there I draw this quote for you to consider,
“He is not a trained oncologist, but he is treating cancer. He posits a novel mechanism for cancer (a patient’s lack of antineoplastons) that is unrecognized in the medical literature as a cause. He has sold ANP not only as a cancer treatment, but also as an HIV treatment, an unjustified action for which he was severely disciplined by the Texas Medical Board. Checks for donations that are meant to go “toward the continuation of the Clinical Trials and Research” are to be made out directly to “S.R. Burzynski, M.D., Ph.D.” He has initiated over 60 phase II studies over the decades and seems to have completed exactly zero of them. Three independent investigations, published together in The Cancer Letter, concluded that his studies were “uninterpretable.””
Please let me know if you can refute a single claim made in that passage, with evidence, please.
I look forward to your careful and considered answers to my questions.
All the best from a rainy (shocking, I know) England.
Wayne, this is now a matter of public record. I look forward to your reply. I would also like to add that, you’re doing a much more coherent job than Marc Stephens so far. I at least appreciate that.
Oh, one more thing, Wayne. I will raise just one point that maybe I haven’t addressed that clearly here. Josephine Jones has just rightly observed it to me.
While we are clearly on the same page about patient privacy, this, in the context of treatment efficacy, doesn’t really matter. Just because some, so far unnamed, bloggers are choosing to speak ill of patients, that doesn’t take away from any of the legitimate questions raised about Dr. Burzyński and his clinic. Be careful not to fall into that trap.
As I say, I look forward to your response.