So there we have it. Mr. Dolcefino has now confirmed he is working for the Burzyński Clinic.
There are certainly some specific questions that this email raises. I still await answers to some questions that haven’t been covered here. You can see the initial email from Wayne and my response here.
Now Wayne is speaking in an official capacity and not expressing his views as that of an interested bystander, I have no issues with taking his communications apart. While I question the blurry lines and times at which he claims to have been, either working or not working for the Burzyński Clinic, I have limited evidence for this.
As I told you I am still catching up and researching details about the Burzynski clinic, but I have now been formally asked to continue my communications with responsible parties ..
An interesting turn of phrase. We will see in the future if “responsible parties” means those who engage in reasonable discussion about the clinic and Burzynski himself, or ignoring them as being unreasonable.
Let me update you on a couple of items.
First, you suggested I had been less than truthful about my business relationship with the Burzynski clinic. Let us deal with that first. As I told you I was hired because of my journalistic experience to help the Burzynski clinic with media relations .My initial task was to create some videos for the clinic and offer any advice .
Without seeking prior approval I contacted the Merritts because I was intrigued by their blog. You asked me if I would talk to them and I said yes. I am still waiting.
This raises the first question. If you contact an ex-patient of the clinic, but you claim to me that you weren’t working for them at the time, why do,you say in your email that you are? Either you’re lying to me, or you lied to the Merritt’s. The choice is yours. As for contact with the Merritt’s, I know that Lisa and Wayne Merritt will read this. They will contact you as they see fit.
I also reached out to another woman involved in the lovely donation to St. Judes Hospital. After I shared your e mail with Dr. Burzynski, he agreed I could continue reaching out to responsible parties to answer questions, in hopes of finding out if people really want to talk about cancer, or if they have another agenda. Actually, I understand his skepticism.
I’m confused. For over 35 years Dr. Burzyński has failed to reach the end of a study and then publish meaningful data. Our agenda is to see controlled trial data, that is reproducible and Dr. Burzyński knows this.
Since you posted details of our conversation I have been intrigued, actually amazed, even shocked at the misrepresentations others try to draw from my comments. It is understable the Burzynski’s have been reluctant to dignify some of the outrageous stuff I have seen posted. I watched a recent video conference where the clinic’s patients were called fanatics of a death cult. REALLY? People who have cancer. They should be ashamed, and they will not be included in my conversations, unless they can elevate the dialogue.
This is nothing more than a deflection. I will state again, I nor any of the bloggers I communicate with, have ever or would ever speak ill of individual patients. I haven’t ever done this and while I feel it’s a valid point in general, it has nothing to do with me or the legitimate questions raised. I understand that Dr. Burzyński would be reluctant to deal with “outrageous stuff” and I’m not asking his to. I want him to answer the legitimate questions.
Now I will attempt to answer some of the questions raised, but I can only answer a few things.. .
Let us try to correct the record on the Phase 2 trials. The last patient was enrolled in July I am told, and the trial has ended. Not because of any event, other than the trials were always going to end when they achieved their clinical objectives. I have seen people claim the FDA shut the trials down. Absolutely false.. Perhaps all the journalists out there should take a few minutes to call the FDA and ask, rather than retweeting someone elses speculation.
As I told you the FDA came by recently after completion of the trials. That is what the FDA does. The clinic welcomes them anytime, and answered any questions they had. They are welcome anytime.
I’m willing to accept, for agreements sake that Phase II of the clinical trials ended in July and that it wasn’t the result of any event, such as the death of a patient.
After the completion of Phase 2 studies, Phase 3 trials usually follow, especially if you’re actually interested in getting approval. These typically involve several hundred to about 3,000 people. Then comes the New Drug Approval (NDA) process.
While I agree that the FDA’s presence it not uncommon at the end of a Phase II trial, what is unusual is that it took from July until “recently” to attend. If the clinic is truly interested in being published they really should have been able to get their data together significantly quicker that over 6 months. This is a real red flag.
Also, this isn’t exactly the first occasion that the clinic has ended a study without publishing. In fact, over 50 trials have been started without results being produced. This is no just unusual it’s dishonest. Either the treatment is effective and you publish, or it’s not and you try and hide it. Another red flag.
I should also note that the clinic has told patients that the FDA shut down the trials. Why was this?
As a side point, I have received communication from the FDA. They said they were unable to comment while an investigation was underway.
I am not a medical guy, nor do I claim to have answers to all your questions, but I will get them as I go along. I do note that there seems to be a gross misunderstanding of the Burzynski clinic. The vast majority of patients are not enrolled in clinical trials . Patients with all kinds of cancers are often treated with commercially available medicines. Sometimes those medicines have been approved for the treatment of one particular kind of cancer, but the scientists at the Burzynski clinic believe it can be used for other cancers after a through review of the genes involved.. Doctors prescribe medicine for other conditions every day. . There is a research institute . There is a separate cancer treatment facility..
The use of Antineoplaston treatment, to my knowledge is only approved for use in clinical trials. If the Burzyński Clinic only treated people with conventional, approved, thoroughly tested medications, we wouldn’t have an issue. The complaint isn’t conventional medicine. It’s the unproven therapy and the lack of data.
Conventional treatment at the clinic can easily viewed as an intentional attempt to lend credibility to the facility as a whole.
I do not find it unusual at the least that the clinic insists on payment either in advance or at the time of treatment. I have seen articles , which I know are available to you, showing some of the best known cancer hospitals in the country charge in advance, when there is no insurance. If a local oncologist refers the patient that changes the insurance situation.
And why is there no insurance? That’s because insurance companies won’t cover the treatment. In fact I’ve seen that insurance companies have flagged attempted payments to the the clinic as “suspicious”.
Again we have to ask, if Burzyński was really interested in having Antineoplastons approved for use, why does he charge so much? Get people into the trials, get the data and publish. Is it that hard?
Sorry, I don’t think it particularly appropriate to talk to others about someones private medical bills, but I am not sure what your concern is. Patients are free to ask questions about the cost of treatment before they begin and along the way. If patients want the clinic to discuss their costs of treatment, they should make sure it is ok.
Noone wants to see very ill cancer patients succumb to their disease. I am sure you agree that when a medical institution treats people who have often been turned away, or given no hope by others, that there is a recognition that some of those people will not make it because their disease is so advanced. At the same time, there are others who thought they would die in months, who are alive and well years, even decades later. As a layman, I do not know why that angers some folks. They should celebrate a medical success, not villify it.
So why hasn’t he completed a trial fully in 35 years? Then we could relate these anecdotal cases to the evidence. All we have at the moment is anecdote and while I celebrate people surviving from cancer, we have reason to say that antineoplastons have anything to do with it.
We vilify the clinics complete lack of ethical responsibility towards the world and not the patients.
I just met a patient at the clinic who is an undocumented worker in this country. He went to the county hospital in October with horrible pains, was diagnosed with advanced cancer, and doctors removed bottles of fluid from his body for days. He told me they gave him a few months to live. He was turned away and came to the Burzynski clinic. When I saw him last week, he said he felt great. No more bottles of fluid being removed from his body, and no more pain. He was not a patient in any clinical trial. He was like most patients there. Just there for help. And when I talked to him, we were sitting alone at the clinic.
A single anecdotal example. No reference to if ANP treatment was used. I do have two questions. How did an undocumented worker afford the ANP treatment if that’s what he was/is on. How did he get medical insurance?
I guess I am struggling for a way to compare to address some of the blogs.. Please let me know any stats you may have on the survival rates after treatment at the best known cancer hospitals. I am interested in who is tracking that without a blog.
I see commercials all the time about people who are cured after cancer treatment. I do not see the ones where the person undergoes months of painful chemo and radiation and then succumbs.
Deflection. No data exists from the clinic, so there is nothing to compare it with. Also I’m not sure what TV adverts have to do with the efficacy of ANP therapy. How many have died, having been promised life by the clinic?
As I told you I cannot answer many of the medical questions you pose, at least not yet because I wouldnt want someone to confuse my ignorance for some cult like behavior, and I am not going to get in the game of refuting things that do not deserve comment. If i didnt refute the earth was flat, would you then conclude it was. REALLY/
I can only tell you in the time I have been involved with the clinic, noone has told me what to say to patients, or what to ask. I have talked to patients by phone and in person freely. I wouldn’t have it any other way.
Irrelevant. I do wonder what things are believed “not to deserve comment”? Calling to patients shows, at best anecdote. Also, a bit of a file draw effect. He can’t exactly talk to the patients who have passed away and why would patients that are still alive say anything negative?
I believe in transparency , but as you know the FDA has very strict rules about what research facilities can say about their trials. So when the clinic cannot provide information it is not because of a lack of desire. It is because they are trying to comply with the government’s rules so their work is not delayed any longer than necessary. I would urge you and others to use your influence with peer review journals you believe are worthy to assist the clinic in publishing their data quickly. That would be great. Let me know who is willing and I will report that information to the clinic..
This of course doesn’t take into account the previous 35 years of non publication. Nor does it take account of the FDA’s recent “slap down”, regarding making unsubstantiated claims about treatments.
Also I’m a little amused by the idea that we have influence with peer reviewed journals. If the clinic is attempting to get the data published and aren’t succeeding, this speaks to the quality of the data and not the journals. If the clinic has got good solid data showing the efficacy of ANP the every medical journal would want to publish it.
Finally, while I will do my best to converse wtih you and others on behalf of the clinic, I will expect the same courtesy I have provided. A real name, a real e mail, real contact information. My e mail is email@example.com,and my phone number is available on the website.
Citizen journalism can be a useful information tool. That is the beauty of the internet. It can also be very harmful, in that people interpet other people’s words without any real investigation of their own. I watched that as a result of our phone conversation. Generally, in my experience, when I read something on the internet, I would actually take the time to verify the information before I passed it along.
I saw a blog posting last month , and the first paragraph was a big headline….an alleged threat by a Burzynski staffer to bloggers. I was surprised, but when I read further, I realized they were talking about something that actually happened a year and a half ago. A guy who was terminated for doing it. Inexcusble conduct. It is time for that to be eliminated from the conversation going forward. Yet some try to use this regrettable incident as if it just happened this week as evidence of the clinic’s bad intent. That is not journalism.
Ah, Marc Stephens! Those were the days, weren’t they‽
Like I said, legitimate questions about any medical institution should be answered when they can be in accordance with state and federal law. The clinic is just one of my clients, so I hope to use the clinic website to help address frequently asked questions going forward. And I hope you take time to watch some of the videos as I put them on the website.
Hope all is well.
I think we all look forward to the videos. There are plenty of questions that can already be answered, that have nothing to do with State or Federal law.
The reality is, this email doesn’t answer any of the reasonable questions I asked. Either Wayne is naive about about medicine, or he’s pretending to be. There were quite a few things that could have been refuted or explained.
It also seem that people that are skeptical of the clinics work are to be cast in the role of villain. I hope that the President of Dolcefino Communications doesn’t bring himself or his company into ill repute. I guess we’ll find out soon enough.