I received this email Friday (22nd Feb). I was away and didn’t 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 forth with Wayne over the last week or so, but we might be getting to the point of impasse.
But there come a point when talking in general terms isn’t enough.
Wayne isn’t stupid. He knows that I don’t fully trust his motives or his working relationship with the Burzyński Clinic. He also knows that I won’t stop asking questions while they are still unanswered. I hope the Wayne remains true to his word and will openly and honestly provide answers to questions as they arise.
I’ve split this one up again. I find it makes it easier to relate the comments and points made. My points are brief in places and I generally (almost completely!) avoid writing things above a 12 year olds level!
Thanks for the admission of your error on your skeptics page. It would be helpful if everyone on the internet bothered to care when their research turns out to be wrong, even innocently. It would also be refreshing for people to give their true identities so readers can use it for context. That is what journalism should be.
I genuinely have no idea why using a real or fake name matters. Is David my actual real name? Does that make any questions any less relevant? Of course not! This only serves to distract. As for errors, anytime I’m wrong I will admit it.
I do have some answers to the questions you posed.
The first was regarding insurance. Insurance ,in fact, does cover, for the most part , related charges for clinical trials. That is all the clinic can bill for when the trials are ongoing , in accordance with the FDA guidelines. The ANP is free of charge. Since the clinic is not contracted with any insurance carriers, we collect deposits to cover up front expenses. Patients have the choice to file their own insurance, or we can assist them by filing on their behalf.
Almost no insurance company covers treatment offered by the Burzyński Clinic. Patients have been told differently, the Merritt’s to name just one. Why aren’t they covered? Because they aren’t approved by the FDA.
Saying that ANP is free of charge ignores the many other costly drugs that have often be prescribed alongside ANPs. Again, Wayne Merritt is a good example of this. Prescribed 7 other drugs alongside Sodium Phenylbutyrate (ANP prodrug). It’s a loophole, nothing less.
You asked about Dr. Burzynski, who is a biochemist and doctor, whose credentials are not only available on the clinic website, but on the Texas Board of Medical Examiners. There anyone can see that the clinic has no issues with the state medical board. Patients can also look on the site to see if any doctor has any malpractice claims in the last few years. The clinic does have two oncologists on staff , who work closely with Dr. Burzynski on consulting and have direct access on patient care. Regarding your question about HIV, the clinic does not treat that.
This is an avoidance of the real point. The question was how a non-oncologist who develops a novel, unknown to the scientific literature treatment, comes to be treating cancer with an unproven treatment. Why he felt that he was specially qualified to take an anomaly, untested and jump to cancer treatment is beyond reason.
Wayne is of course correct that the Burzyński Clinic don’t treat HIV. But Dr. Burzyński has in the past. In fact he prescribed ANPs for HIV outside of a clinical trial and charged for the privilege. No FDA approval for either that use or that condition. As a result he had his medical licence suspended for 10 years. This suspension was suspended as long as he abided by all of the Texas Medical Boards conditions, including not using ANPs for HIV treatment. I thought ANPs were a cancer treatment?
You and others have raised issues of cost. Obviously the clinic has no control over what people claim they need when they solicit money to pay for their travel expenses and treatment , but if a patient wants to show you their bill you should ask them for it. Then you won’t have to rely on hearsay, but their actual bill. In reality, the Burzynski clinic believes it is more reasonable in cost than other higher profile cancer facilities. Patients should always ask questions about cost, possible length of treatment, and all must signed informed consents so there should be no question.
Just last night I was watching CNN and a story about the high prices medical facilities charge for those little cups they put pills in. Health care is expensive, no doubt. There are doctors , scientists, nurses, and administrative staff . It is expensive to run a cancer clinic.
The issues regarding cost are numerous. The clinic does have control over what they charge. It’s almost unheard of for people to pay to take part in clinical trials. If fact in most early stage trials people get paid. If Burzyński actually wanted to get meaningful results it would have recruited enough people in the past 35 years by not charging.
While ANPs may not be charged for themselves, the many other drugs prescribed in combination are. Saying the ANPs are free but then charging approximately $20,000 for initial assessments and treatments and then many thousands (I’ve seen as high as $15,000) per month is truly credulous. Why didn’t Burzyński first get the clinical trials done and published? If he had and the results were good, then he could justify massive expenses. Other “high profile” clinics use tested, proven to be efficacious drugs. The Burzyński Clinic doesn’t and has no valid justification for its pricing. Do the clinical trials, produce positive data, then charge for treatment. Simple. The fact he hasn’t suggests that, after this amount of time, that no good evidence is likely to be forthcoming from the clinic.
As I told you , the vast majority of patients at the clinic are not involved in any clinical trial, so it seems only fair that we all begin to focus on the only remaining issue and remove any further criticisms related to the vast majority of patients treated here.
Wayne expects that any reasonable, rational person would think that way. Don’t worry about the 60+ clinical trials that either haven’t been completed or have with pointlessly small data. Ignore all of the past issues and we’ll all start from scratch. This is a truly implausible position! The clinical trials over the past 35 years speak to the behaviours of Dr. Burzyński.
I read your post and it belies your claim that you are only looking for data on the remaining investigative drugs to be fully convinced. You describe patients of these clinical trials as victims of false hope, and your associates seem to think these people, once treated, are somehow brainwashed to believe the clinic has helped them. Hundreds of them! REALLY. That is just wrong. Frankly, it is beneath your journalistic standards, and quite honestly, plain silly. And so I am clear, no amount of anonymous faceless unfair attacks will change that. All it will do is eliminate options for people who deserve a shot. That is what victimizes people.
If the data produced showed strong efficacy of any of the ANPs and the data was reproducible, I would change my position. A scientific consensus would be useful. Sadly, this seems to be unlikely. The scientific consensus is that it’s unproven and implausible as a treatment. Dr. Howard Ozer, director of the Allegheny Cancer Center in Philadelphia described it as “scientific nonsense”. After 30 odd years this should have caused pause for thought with Dr. Burzyński.
Patients will remain victims of false hope until evidence is provided of efficacy. I’ve never claimed patient are brainwashed. I will say that patients have been grossly misinformed by the clinic. From cost, insurance coverage and even treatment success.
No one wants people to die of cancer. But as of yet no ANPs show any evidence of being a shot at surviving.
Coming from Wayne, I’m going to ignore the comment about journalistic standards. But again there are comments of faceless and anonymous attacks. I have offered to ask these and many more questions to Dr. Burzyński himself.
I can see why a handful of critics are growing more and more frustrated. The evidence. There are just so many patients who came to the clinic with a death sentence, who were told they had months to live, who chose the clinic’s method instead of a toxic brew, and who are happy and healthy two decades later. That is indisputable. As a journalist, you know it.
In fact, check out the website, and read the story of a little boy who was supposed to never grow up and who just got engaged for goodness sakes. He sent us a picture to put on our website. You really think he feels like a victim.? None of them are.
Dangerously close to a testable claim there. The clinics method often is a “Toxic brew”! Chemotherapy drugs are often used in conjunction with ANPs and by most standards ANP is a chemotherapy drugs itself. Also, this belies a misunderstanding of medical efficacy. The world is full of people who have survived cancer despite having been told they were going to die. Not only do spontaneous remissions happen but so does misdiagnosis. Not just that though, with standard chemotherapy drugs being prescribed along with ANPs, some positive results are to be expected!
I have never disputed that people have survived. I dispute that its due to any of the ANP treatments.
Are there people who came here very sick and did not survive? Absolutely. Are there people who decided they couldn’t continue treatment because of the expense? Sure? Were they guaranteed a cure? Of course not. The sad reality is very sick people sometimes cannot be saved. Of course we don’t see websites and blogs tracking the records of the world’s most famous cancer hospitals, but maybe it would be a good exercise if that is what this truly is all about .
This is a good opportunity for everyone to take a deep breath and let the regulatory process continue.
Of course the reality is that sick people do die. Sometime seemingly dying people get better. Saying that we don’t see websites and blogs tracking records of other cancer facilities is just ridiculous. It has nothing to do with the treatment and efficacy at the Burzyński Clinic and is generally untrue. Statistics for morbidity are gathered in nearly all countries and from all hospitals. As a subtle distinction, if the Burzyński Clinic suddenly started having a 100% success rate I would still be skeptical. This is because is hasn’t produced trial data to support it’s claim.
I think we can imply from “let the regulatory process to continue”, that Wayne is referring to the FDA. I should add that the FDA does not restrict the sponsor of a clinical trial from providing data on their study, despite the claim having been made to the contrary. The FDA do of course not allow you to make promotional claims, which is something the clinic has been guilty of before. These are two very different things.
Does the clinic try its best to do what it can? Absolutely. The clinic says it has voluminous data showing effectiveness of their treatment, and has published data, whether you are satisfied with the method..
Can we please see some of this voluminous data please? He also says “whether you are satisfied with the method..” as if that’s a minor detail! As of yet no data has been released by the clinic that has shown efficacy for any ANP. The clinic hasn’t started an Phase III trials. I ask anyone reading this to find me a link to a good, controlled study of an of the ANPs.
The clinic is actively compiling the data from it’s completed trial and is seeking to publish it in peer review journals. You want to see data published. So does the clinic. Dr. Burzynski knows this is a critical juncture for his research. . The clinic is operating as closely as possible with the FDA and Texas Medical Board to ensure we do this exactly as the regulators suggest. That is why he is not available to comment. He believes his work is too important to jeopardize.
I’ve covered most of these points already. The issue of journal publication is always interesting. If the data is good, well blinded, generally well controlled we all look forward to reading it in the Lancet. In the meantime a timeframe for the compilation of the data would be useful.
I have done my best to answer the questions you asked. We will keep interested parties abreast of our work as we can. Please show me you truly are open minded to the people who are true success stories, and celebrate them . And urge others to do the same.
In the end, keeping people alive and healthy is everyone’s hope, even if there is medical disagreement on the way to do it.
Nite from Texas,
I have asked Wayne Dolcefino if I can pose these questions directly to Dr. Burzyński and so far, this request is unanswered.
There are many inaccuracies in Wayne’s answers. There is either a genuine lack of understanding about science, medicine and evidence and Mr Dolcefino is choosing not to investigate the points I have made here and in previous replies, or there is a deliberate attempt to not answer questions either fully or correctly in an attempt to spin the public relations of the Burzyński Clinic.
Either way this reflects pretty poorly on Wayne. I hope he can address the points I have made here.