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Pete Cohen chats with Richard A. Jaffe, Esq.

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4/2012 – Pete Cohen chats with Rick Jaffe
(33:59) 11/9/2012
Richard A. Jaffe, Esq.
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How did you meet Dr. Burzynski?

A long time ago in 1988, um, he hired us to represent him in his Medical Board case, so, uh, started working for him then, and then there got to be more and more work, and, uh, at some point it was so much work, it was just easier for me to be down here
So I moved from New York to Texas, mostly just to, to represent him, and my wife was in the oil industry, so, it was a “no brainer” for her to move down here too

And how, were you intrigued by this whole case ?
I mean, did you work out straight away that this guy was genuine, and there was really something here ?

No (laugh)
How do you know, you know ?
At the time we represented, uh, a number of a alternative health practitioners around the country, and we heard a lot about Burzynski, but you don’t really know
I mean, um, um, there are a lot of stories out there
Every doctor seems to have a few patients, uh, that were helped
So initially, I mean, how do you know ?
His operation was larger than most of any, uh, health practitioners, alternative health practitioners in the country, and, uh, seemed a lot more sophisticated, but, uh, it’s not really until you dig in the medical records of the patients that you really see what’s going on
I mean, that’s what you really need
I mean,
It’s not really even, it’s
’cause this whole thing about anecdotal evidence, that everyone has testimony
so every doctor
You know what I mean ?
anybody
Even charlatans have testimony
people
one or two people
or 3 or 4 that’ll come, and say w
they were cured, and maybe, maybe the patients really believe that to be the case, but, um, oftentimes there’s other explanations
Prior treatment, um, the nature of the disease
Sometimes it’s such that their natural, the natural history is not straight linear, um, but after looking at some of the medical records, I mean, you know, I think
it’s just,
uh, anybody would become a believer, and indeed, I mean, government, government doctors have come down here and looked at

some of the records, and they were convinced that, that the treatment was causing remissions in some brain cancer patients

So, I mean, obviously lawyers, I imagine many lawyers all over the world would often take on a case, when they know, possibly the guy isn’t telling the truth, but they can see there’s still a story, and they, they, they, they, uh, represent that person, but for you, I suppose
that when you realized that there really was a story here, did you kind of get, emotionally caught up in this whole thing and think: “Right, th this guy’s got a cure for cancer, and I I need to bring this to, bring him to just, not bring him to justice, but, clear his name
Well, I think with Burzynski, more so than any client I’ve ever represented
He represents a unique constellation of medical services
He’s the only guy in the world doing what he’s doing with antineoplastons and now with this treatment, so, it’s really different
Uh, you know, with Burzynski, most of the patients, are in bad shape
They’re either dying, uh, they, or they have a disease for which there is no known cure, you know, like a lot of these brain tumors
So, even from the beginning, what’s different is their are many, many patients back then who were on the treatment, that uh, that felt that without this treatment they were going to die, and so that, that’s much different, than the average, any kind of lawsuit
Right ?
So th th these lawsuits, the Burzynski cases back then and now, uh, these cases matter, in a, in a deeper, and fundamental, and personal way than most anything, well I think that any lawyer does
I mean, any criminal defense lawyer, who defends an individual, is defending that person’s, uh, liberty
Alright ?
Versus incarceration
But here it, it wasn’t so much, or, it wasn’t exclusively about Burzynski, it was really about all these other patients, and they certainly believe they needed him, and, uh, uh, many of them, obviously did
So, so that, that, that’s a whole ‘nother dimension, which typically we lawyers don’t get involved in
So, I mean, it’s a responsibility but also a great privilege to be working on these kinds of cases

You’ve been representing him for how long ?

For a long time
Since 1988, continuously

And can you believe this is still going on ?

Well, you know, uh, it’s, you know, it’s, it’s just ongoing
I mean, until there’s a cure for cancer, for all cancer, either done by acknowledged

or, uh, uh, to be Burzynski’s cure or somebody else’s
I mean, this is ongoing
And I guess the problem is, you know, ultimately, there’s nobody yet
Not even Burzynski has the cure for every cancer or
even every stage, or even ev, every, ev, ev, every person that had cancer
So, because it’s such a tough battle, and because, it doesn’t work on everyone
So you have these open questions
Ah, so, so,
Yeah, I mean, I guess, I, I can’t believe he’s still messing around with these clinical trials
I mean, I think that if the drug didn’t have his name attached to it, it’d probably would have been approved by now
So, and I think, so that, that’s unfortunate, I think, that when you fight the FDA, and even if you win, you know, the F, the repercussions, you know, you know I, you know I
Hopefully the drug will be approved, sometime in the future, but, but who knows ?

So, um, why do you think, why was it, I mean, obviously I came over here as you know, for this case, which is now not going ahead at the moment
Why, why, why is that ?
Wha, what has the judge, said ?

Well, of course, you have to (under)stand, this case involves a different type of treatment
It doesn’t involve antineoplastons,the drug Dr. Burzynski invented, and your friend is receiving, and it involves a new approach to cancer, which is sort of like personalized medicine, where they take a bunch of FDA approved drugs, that have shown some promise, on a particular cancer, but are not, uh, approved for that indication, and based on these early clinical trials showing promising results for genetic testing they give these combinations of FDA approved drugs, off-label to patients, and that’s really what the, this case is about, and, uh, you know I think, I don’t think they, they never had a case
I mean, they never had a case
The, the main allegation, in each, of the 2 patients involved, is that they used this treatment, which wasn’t sufficiently tested, and was non-therapeutic, and whatnot, and we had a, what I would call a dry run
We presented the evidence to the Board, or 2 members of the Board, in both of these cases
In each, in each case, the Board members felt that the treatment, was within the standard of care, given the advanced condition of the patient, or one patient, and given how rare the other patient’s tumor was
So, we had our dry run in each case, and the Board found in our favor on the main charge
They had some technical issues with medical records or whatnot, and, uh, the Board basically said, they took the position, ok, agree to some kind of sanction on these little charges, or, or we’re going to go after you on everything
So, we refused the honor, and, uh, the Board then charged him with the same thing that they already cleared him with, or on, and, and so we had to do, you know, basically the same case again, and, uh, the irony in, is in these 2 cases Burzynski wasn’t even in the country
He was, he was, he was away for, uh, in both, for both cases, when the patientscame
So, uh, the question is how do you hold someone responsible
Even if you own the clinic, for treatment administered and prescribed, by other doctors, and that concept of vicarious liability does not, uh, exist in jurisprudence, and in the law governing professional re, responsibility, anywhere in this country
So, the Board’strying to start that
You know, I think they just got in over their heads, they
Most people just knuckle under
You know, most people don’t, are afraid to go to court, so they’ll sign anything just to, you know, not to go forward, but, you know, Burzynski faced serious stuff
I mean, he set, faced, 5, 10, 15 years in jail
So he wasn’t going to be intimidated, by the Medical Board, and he refused to give in
So when I told the Board at the time, and I told them all along, they have no case, and o on the merits they have no case
We already won, and they have no case now, and, and slowly I think, the Board is starting to understand that

And what sort of a person would you say Dr. Burzynski is ?

Well I think he’s a complicated person
I mean, I think, uh, uh, you know, he, I think like a lot of mavericks; I represent a lot of mavericks around the, uh, uh, country
One of the main characteristics of these guys, is that they have absolute and total certainty, in what they believe in, in what they do, um, and no doubt
Uh, they all think they’re right
They all think that history is going to vindicate them
Now, I’ve represented some people where I personally doubt (laugh) that, uh, uh, that belief, but not in Dr. Burzynski’s case
I mean, I think he’s all, he’s definitely helping people
He’s definitely, uh, uh, uh, making, extending people’s lives, and curing some people that otherwise would have died, and so I think he, and so I think he happens to be right
So, uh, you know, so, but, but he’s a human
He’s got a big ego
He thinks he’s, uh, he thinks he has made an important, contribute to medicine, and he’s not shy about sharing that sentiment
So, uh, I think, and I think that he’s, uh, not American
So he comes with a completely different mentality towards, say, the government
Alright, he grew up in communist Poland, where everyone, where everyone, has to work around, the government, and I think that’s much harder here, and, you know, I think he has expectations that, that he would have a lot more freedom, than it turned out he had, too, and he thought he would not have to deal with the kind of government, uh, rigamarole that you have to deal with in communist, Poland

And, and how do you think it might all pan out for him ?
I mean, I know you don’t have a crystal ball, but if you could look, 5 or 10 years down into the future, and, do you think that he will have got somewhere, to be accepted in the medical (?) of oncology ?

Well, I certainly hope so
I mean, 5, 10 years from now
I mean, I think, at a minimum, what’s going to happen, there will be many, many patients who will be alive, and continue to be alive because of him
Some, will have their lives extended
Some will be cured
Some wi, won’t be cured, and will die
So, I think that’s for sure, going to happen
You know, is there going to be an end to, uh, all this ?
We had a period of maybe 10 years where there was very little action with the Board, but, uh, you know, it’s hard, frankly, I mean, just in, and again my perspective, like I’m in a, like a, a sergeant in the trenches, in trench (laugh) warfare
So, it’s hard for me to see the big picture
I mean, I just keep fighting these battles, and there’s one, after another, after another
So this is really just the latest, and on there’s civil lawsuits, and then there are people on the Internet, and then, you know, there could be more Medical Board investigations
So, lo, look there are a lot of people who don’t like what he’s doing
They think what he’s doing is either unethical or wrong, or shouldn’t be giving drugs, these drugs to people, except under clinical trial conditions, and, you know, he has detractors, and he has a lot of supporters
I mean, uh, mostly amongst the patients he’s cured
So, I don’t know that, that, that is gonna resolve itself
I mean, ultimately, he’s one of the few people in the country, that, or maybe the only person in the country that does what he does, and, it’s not the way medicine is practiced, in this country, typically
Right, and, you know, I think what he does, is, is more, is more patient oriented, in a sense that, once you’ve been told you’re terminal, why should you just get the palliative care that a medical oncologist thinks, you know, they should be given
even though when, no one ever gets cured of chemotherapy, once it’s palliative, once you have stage 4, solid tumor

Mmm

I mean, they give chemotherapy for what they call palliative reasons, which means, not curative
So, this concept of giving, just conventional chemotherapy to make you feel better, extend your life 9 weeks, I mean, y, not everyone wants to do that
Some people want a shot for a real cure, and, you know, based on the evidence with antineoplastons
, I mean, he seems to be giving people that shot, and curing some of the people
So, you, you know, I don’t see how, this thing gets resolved
Up until the time that the
treatment, the
antineoplastons is approved by the FDA and, you know,
it’s, it’s hard to see a clear path, for that, for a lot of reasons, not the least of which is financial
I mean, it takes dozens of 10’s of millions of dollars

Mmm

or 10, 100’s of millions
So, I mean, someone has to finance the clinical trials
The drug companies aren’t interested right now
They’d just as soon, buy a drug that’s been fully tested
So, I mean, the drug company response has not been overwhelming, because, even though this phase 2 phase, have resolved, and, and, uh, they have excellent results, the drug companies want to wait and see
So, uh, it’s, it’s big money
I don’t think there’s any way in the world Dr. Burzynski, himself, can fund phase 3
I mean, he, he funded everything else now, but phase 3 are, is a much bigger stage involving dozens and 100’s of patients, and that’s just within the financial means of any individual

it seems like it’s unlikely that its going to happen right
I mean, even from the point of view of, what, with phase 3 trials, they’ll be with children

with brainstem gliomas, right
and the FDA’s saying they’ve got to have radiation

Yeah I, um,
I unfortunately, I haven’t been involved in that process
I just see the result, and I, I, I just don’t see how any parent agrees to that, you know

I don’t see how any parent agrees to it
I don’t see how clinical investigator, agrees to do it
Um, I don’t know
I got so, I got some questions of the FDA as to, why they forced him into this particular protocol
I mean, I don’t know
I don’t have any facts or evidence, but I, I, just doesn’t make any sense to me

what’s you’re about that ?

I don’t know
I mean, I, it just doesn’t seem to me, that it’s a, that it’s a fair clinical trial that

Mmm

either an investigator would find ethical, or a patient, or a family, would agree to have their patient treat, their, their kid treated under
I mean, it just doesn’t make any sense to me
I mean, it’s worse than
I mean, both phases, both phases, both arms of the study, you get radiation
It’s radiation alone versus radiation with his stuff
So, I mean, it just doesn’t make any sense to me, given, given the clinical, the phase 2 clinical trial results

So just a, so just a few things, like, you know I’m going to talk about big Pharma, and then talk about the FDA

Right

They talk about the many people as if they’re one person, but, you know, they’re obviously a collective group of individuals who work for an organization, right ?

Well, I mean, I think, the concern is, that the FDA now, by statute is, in no small part funded, by the pharmaceutical industry
It’s like “Pay as you go”
So the, the pharmaceutical ind, industry now, pays for, the processing of the clinical trials by the FDA
So, and then you have the whole concept of the revolving door
You have a lot of government officials going into the drink, uh, drug companies
So I think that’s another problem
So, I mean, you know, I think conspiracy is too strong of a word, m, but, you know, I will say, I don’t think the system’s set up, for an individual like Burzynski, to get a drug approved
I, I, I just don’t see
There’s no support for that
I mean, the days
I mean, it’s like, Einstein, you know ?
He sat in a patent office, and, and doodled, and had his little theory
He could never get his, stuff published today, you know ?
Where did he go to school
?
Where was he teaching, you know ?
So Burzynski has a lot of the same problems
They say he doesn’t publish, but, they won’t let him publish
So, uh, or they won’t let him publish , in, in the mainstream journals
So, I, I, I think though, I think the, I think the system, has a strong bias, against a guy with a discovery
So, that’s not quite saying, there’s a conspiracy, but it’s, it’s sort of along the same lines, and, you know, the conspiracy implies some kind of, um, intentionality on the part of one or two, or some small group or coterie of people, and I don’t know, I don’t think that’s really the case
I think what happens is, the institutions are such that, they allow certain things, and disallow certain things
Alright ?
I think that’s just
there’s no
I don’t think there’s any 2, 3, 4, or some, coterie of Rocka, they’re like a Rockefeller conspiracy
People are saying that there are 12 industrials
That they control the world
I mean, I don’t see that happening, but, the whole system is such that, you know, it’s, it’s
I guess what, uh
The, there’s a book by, uh, a, a, Thomas Kuhn, the Structure of Scientific Revolutions, and he talks about, normal science, and how science progresses, in terms of paradigm shifts
So, normal scientific medicine, works, uh, by big institutions doing, studies about combinations of drugs, after drug companies, invent mostly, modifications of existing drugs, and, less commonly, completely new drugs, and, uh, less commonly, different classes of drugs
So, you have a whole, you have a whole pipeline from a drug company, a whole, uh, uh, mechanism of testing, by the universities, funded by the pharmaceutical company, uh, all the pharmaceutical companies, and that, that just doesn’t lend itself, to one guy, sitting someplace in Houston, or wherever, and having a drug, put through that process
That just doesn’t happen
Burzynski is, so far as I can tell, the only person, to ever completed, a phase 2 trials on a drug he invented
I don’t think that’s ever happened, before, and I don’t think it’ll ever happen again

Ah, was it ’98, was it the chairman, uh

Kessler ?

Kessler
I saw, an interview he gave, press, a press conference where he was explaining about, being able to fast-track
The FDA trying to make it possible to fast-track, you know, drugs that have shown, you know, positive, rather than going through all of this sort of clinical trial, and there’s a guy in the, in the press conference who started asking questions about Burzynski

Right

and you could just see quite clearly he was very uncomfortable

Right

asking questions about, uh, about Dr. Burzynski
How do you think someone like him,
would view, someone like Dr. Burzynski ?

Not favorably
I think that, uh,

Do you think they must know ?
Do you think they must, even he, let’s just say, if he were on his own, he, he knows there’s something there
That he’s obviously got something

I,
I don’t know, uh
I think, that, the guys in conventional medicine, because Burzynski came from orthodox medicine
He was at Baylor
He was a researcher at Baylor
So, I think, they’re not going to Burzynski, is that, he didn’t go about it, the way, other physicians would have done it, other scientists would have done it
So normally what would happen, is, uh, uh, I mean, I think the critical, point in his story is that, when he was at Baylor, and his, uh, professor was supporting him, this Unger, left, you know, they had space for him
They wanted him to go in the Oncology, uh, Department, but, they wanted the patent, to his drug, and he wouldn’t do it
So, that would have been the more conventional approach
You give up the patent rights, you become part of the team, then some big institution, uh, uh, shepherds the drug through, and then they find some drug company support, who will split the patent with the university
So, had he done that, uh, you know, I think the drug woulda been approved by now, but, you know, it was his drug
He came to America with it, and he wasn’t going to give it all away
So, I mean, I just think that’s, you know, I mean and that’s, you know, I think he wasn’t expecting that kind of thing in America
Maybe in communist Poland, but not in America
So I think that really, you know, set him down the path of being a, a, an alternative health practitioner

And wha, wha, what was it like for you when, uh, winning, the case, in was it, 199, 3, 1998 ?

’97

1997

Well, you know, there wasn’t just one case
I mean, I mean, it was everyone
I mean, I analogize it to, like whack-a-mole, or whack-a-rat, you know
You have, like a rat come out of, of a hole, and you bang him, and one comes out of this hole, and all of a sudden you’ve got 2, and then 3, and, so, you know, during the early ’90’s, I mean, I mean, there were 3 grand juries, uh, we had the Medical Board action, which went to hearing in ’93
The Texas Department of Health sued him in ’92
Half a dozen insurance companies had sued, uh, uh, sued him for, for some, for Racketeering
Uh, Texas Air Quality Department went after him
I’m trying to think who else
So, all of this happened, over the course of 3, or 4, or 5 years, and it was just, continuous, and so, one agency would, would get active, and then, they get beaten down
Then somebody else would come, uh, come up, and surface, and indeed, I mean, you know, it, you know, some of them flat out said they were waiting to see what happened, with this oth, wha, what happened with this other agency, and they weren’t gonna do anything, and then when they got tired, they decided, that this new agency had to do something
So, I mean, that was flat out, what happened
So, yeah, I mean, it culminated in the criminal case, I suppose, but even there it was up and down
I mean, the judge ordered, uh, ordered, prohibited him from giving the treatment to anybody else, because the Texas Medical Board case, ultimately went against us, and then we had to go Congress, and Congress forced the FDA to put all his patients on clinical trials which made the Medical B, Board case moot, and then we won the criminal case
So, after we won the criminal case in, uh, ’97, things got quiet for a little bit
So that, that, that was good
I mean, it was quiet
I mean, relatively quiet, and then, uh, lately in the last couple years it’s been very active again

So the worst case scenario would have been
What would have been the worst case scenario ?

For when ?

And this, this
What could have happened this week if the case had gone ahead ?

Well, the worst case scenario would be, there would be a finding, that, that it’s a depart, it’s a departure from the standard of care to use, uh, off-label drugs, that haven’t been approved by the
FDA for an indicated use, and you can’t use the combination of the drugs until someone gives the stamp of approval saying that their safe and effective, which means, you know, you couldn’t, it couldn’t, you couldn’t give the treatment anymore to patients
So you have 100’s of patients that are on this multi-agent gene-targeted therapy, and ultimately that form of treatment is only available at the Burzynski Clinic
I mean, I don’t think that even clinical trials
Burzynski, depending on how you look at it, he’s a few years ahead of, of, uh, well, even the clinical trials
I mean, they’re some clinical trials now on different kinds of cancer where they’re doing 1, 2, or 3 agents
He’ll use 4 or 5, albeit, lesser dosages
So he’s treated 1,000’s of patients like that, but there’s no place else in the world where people can get, the treatment
So it’s kinda the same thing as back in the ’90’s
We have people on drugs, uh, which are unavailable, uh, and, only available through Burzynski
So, if he couldn’t give them, to people, then they wouldn’t get ’em, and, they’re terminal, and, they’re doing well
I mean, or they’re not going to do as well, or they’re going to die
So, it’s, I guess it, it’s sort of the same thing here, ah, uh, only, uh, the irony is all these drugs are, approved by the FDA, and most cancer patients get off-label, uh, drugs
Drugs off-label
So that’s, very common in cancer
It’s just that not common with the drug used on these patients, and in the combinations used

So, this finally
Whe, when you’ve, uh, won these cases, I mean, there must be, it must be good, right ?
It must be good feeling

I had a good feeling last week
I mean, I mean, you know, or I’ve been working non-stop, for months, every day
I mean, there’s no day off in this kind of stuff
It’s just constant
It’s just, his war
There’s always something to do, and then I’m a solo practitioner
So, when the judge cut the heart of the Board’s case out, I’ve been telling the Board, that they can’t, that they have no basis to, to, to bring charges against him, for several years, since 2010
, 2009, and they’re not listening, and, and, I was pretty sure that once you had a judge look at the case, they would, rule in our favor, you know, but the problem is the Board is, like a law unto themselves, and they think they can do anything, and, uh, they just changed the law, in September
So actually, the Board has no recourse
They, they used to be able to change findings of facts, and conclusions of law, but as of September, 2011, they can no longer do so
So, if the, judges’ ruling s, uh, stands, as I think they will, their only remedy is going to be to appeal to a State District Court, and they’re not used to that, because they, like exercising, uh, complete authority
So, they’re in a new position, and I’m sure this is the 1st case, that they’ve ever, not gotten what they want to, from, from a judge, administrative law judge, and not being able to correct it
So, I mean, that, this is a good ti, completely new experience for the Board, and I feel bad for them (both: laughing)

You, you, you do
As a Board they all sit down, and as a group of people, and talk about Dr. Burzynski, and, and, and work out how they’re gonna bring him down, and then ?

Well, that’s more the conspiracy
I, I, I, I think that, some of the Board members, may know of him
He, but, but, but like I say, he’s appeared in front of these informal settlement conferences, and basically, individually they, I mean, exonerate him, of, of the main charges, but I, I, I think that, you know, when we talk about the Board, the Board other than these a, acting informal settlement conferences, where you have one Board member, and one member of some district disciplinary review committee, we’re not really talking about the Board members, these doctors, and lay members of the Board, we’re talking about the Board staff, and that’s the lawyers and administrators of the Board, and I think, you know, I don’t know
I have some, uh, uh, they need to clean house
I mean, they’re getting some very, very bad legal advice, and I, I just think the legal advice at the top, is, is, is horrible, and, and they need to make some dramatic changes, and I think it would be better for the people of Texas if they, just did some house cleaning with the administrative staff there

And what do you think about the way that, uh, Dr. Burzynski’s been , what’s the word, in England, he’s got a very bad press there

(Alright ?)

and, um, why do you think that is ?

Uh, why, well, I mean, look
I mean, I think, people have opinions
They’re,
they have the right to express opinions
I mean, I think, uh, some of his agents did some things that I think, were not wise, in retrospect
I mean

Mhmm

Uh,

The stuff with the, this kid, this blogger

Yes

(?)

And I think that, uh
I think you have to be very careful, about what you tell people that are expressing opinions, and, you know, I mean, I, I, I think, you know, I think there’s a reason why, lawyers get involved in these cases, and should be involved, and I think what happens is, you know, I think there was a, you know, a well meaning, individual, who just went too far, and I think stirred things up unnecessarily so
You know, I mean, I think someone who had some legal training, acting on Burzynski’s behalf, might not have made some of the, you know, just faux pas that were made
So, I mean, that stirred, some things up, and I think

(?) stirred something up that was already there ?
You know, ’cause, I know, I’ve spoken to so many people in the U.K., and, uh, and you find very few people that have anything positive to say
In fact, a friend of mine who’s a famous doctor on television, when I was here, he was on British television with a little girl, and her father, who were trying to, uh, raise money to, um, come over here and, um, in fact, they couldn’t come anywhere, come, they couldn’t come anyway, because, the, uh, FDA said that this type of brain tumor, she couldn’t be treated anyway
But this doctor, who’s a friend of mine said, uh, Dr. Burzynski is, you know, he’s a medical pioneer
He’s, uh, uh, he said that and then literally, for 2 months, non-stop, I think especially on Twitter, they said that he never should have said this, and the guy is a quack, and he’s a, he’s a fraud, and

So your, your friend got in trouble for saying that he’s a pioneer ?

He didn’t get in trouble, but I mean he got a lot of bad press, for speaking on television with this child next to him, saying that, Dr. Burzynski was, you know, a pioneer, and pioneers often have a hard time, and

Right, right

And, you know, you look at Twitter, uh, you probably don’t
You could be (laugh) and you just see, it’s probably, probably the only, 30, hard, hard core people, who spend, all of their time, trying to

Yeah, I think that’s right
I think it’s a very small group, of people, that are making pretend it’s a big movement
I mean, we’ve looked, at some of the traffic
We’ve analyzed some of the traffic
I don’t even think it’s 30
I think it’s more like, 3, or 4, or 5, that are creating things, and then someone had some friend who’s an actor, who has, you know, 3 million followers, and all
So it’s really a very small group of people, but historically, medical doctors who have stood up for Burzynski, have had negative consequences
We had, someone from the National Cancer Institute, NIH testify, this Nick Patronas, and he got in a lot of trouble for doing that
So, you know, it’s not, it’s, unfortunately, you know, speaking up for Burzynski can have, uh, negative career consequences, or, or just some bad P.R., but that’s, part of being a pioneer
It doesn’t mean that, uh, Burz, I mean, if anything, I mean, it shows, it shows that’s like the medical mafia
Yeah
So, that’s what I call, the church of medical orthodoxy
So, that’s what I call
So

Well I, I think it’s gonna be so interesting when I get this film broadcasted, to see what kind of reaction we get
It, it’s just a story I felt I had to (?)

Where are, where are you going to try and get it ?

I’m going to try and get it
I know people at the BBC

Right

I’ve worked in television
So I’m going to try

Oh really, (?)

I’m gonna try those avenues, but you know what ?
Even if it doesn’t

You have cable
You have some kind of public access ?

Yeah
I’ve, I’ve worked in television for years
So I’ve, I have a very good stab at getting it out there, but if I don’t, I’ll get it broadcasted on the Internet

Oh sure
You do, do a YouTube or something, or do what Merola did as a documentary

(?)

That’s had an amazing impact

Yeah
He’s making a sequel
Eric was just over in England

Oh really ?

I looked after him when he came over

Yeah
He wanted to talk to some of the patients and doctors

Eric, I said, ah, you know, so, we’ll see
But listen, I really appreciate the opportunity to ah

Ok, no problem

really, to be able to talk to you
======================================

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http://www.richardjaffe.com
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Robert J. (don’t call me “Bobby”) Blaskiewicz’s #Epic Skeptic “Word-Salad” #Fail – September 28, 2013 “The Skeptics™” Burzynski discussion: By Bob Blaskiewicz – 2:19:51

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Are you there ?
Okay, we might as well get started if were going to do this
Alright, so ummm I guess we can start with uhhh bit of a conversation
Uhhh
You’ve been on the Burzynski Hashtag for a long time – what’s you’re motivation ?
Okay
So what information have Skeptics posted that they uhhh that they missed that demonstrates that Burzynski’s uhhh treatments are effective ?
What, what have we missed ?
Well okay, uh one of the issues that Skeptics have with Burzynski is that in order to, let’s say, elevate uh the profile of his drug, in order to make sure that everybody who needs it can get, is to complete a phase 3 uh trial uh he started uh I believe was it just the one, right ?
Uhmmm, and that’s gone nowhere
In fact, it was withdrawn this I think within the last week
It doesn’t look like its going to happen, and this is, you know, for all the the phase 1 and phase 2 trials, those are very preliminary trials
Uhmmm, the phase 3 is is will be the gold standard, and also the bare minimum that that the larger medical community will accept uhhh as evidence, so it’s like you’ve lowered the bar for for evidence in a way that that you know oncologists don’t
The the
Right
So, do you think that there is a uh uh conspiracy to keep Burzynski from publishing ?
Right
Right
So, uhmmm, as far as I understand it The Lancet, uhhh the the question of The Lancet publication ehhh is par for the course, that most people are, when they get a speedy rejection from a uh uh, uh journal, are actually uh grateful, because that means there allowed to go ahead and submit their material to another journal more quickly and get it out there
Uhm, but the reaction that we saw on the side of the Burzynski camp was that, see, they’ll never publish us
Uhm, which is, eg, taken as far as I can tell as evidence of a conspiracy or that his name is is poison uh I mean, I think it is, but uhmmm, that wasn’t indicated in the in the rejection letter in order to uh claim that it is is to go beyond the evidence which again we’re not really willing to do
So, uhmmm what is the the ration the the something that I think a lot of of a lot of The Skeptics have been curious about when it comes to your your your blog and your behavior on-line uhhh is that that that, that the format of your blog does not make sense to us, we don’t understand exactly what you’re trying to do with it
Could you kind of clarify that for us because it’s uhhh long and it’s it’s intense and there’s a lot of emotion behind it but we don’t understand exactly, what it’s supposed to mean
Alright, ah have you read The Other Burzynski Patient Group ?
So, ahmmm what is your response say to the story of Amelia Saunders ?
Okay, what part of, what did I get wrong ?
Uh was that Amelia and Luna ?
Luna was the other one, correct
Oh, I, you’re talking, oh this is one of the very 1st ones that we did on the, on the site
Uhmmm, oh, her name is, her name escapes me at the moment
Um, but she wasn’t there for for very long but uh her condition deteriorated very rapidly
Uhmmm, and one of the questions that we had, we raised, is is, you know, you you don’t need to reach full dosage ’cause the the full dosage for these ANP seem to be pretty high, at least the sodium load that that that patients are asked to to carry, or required to carry if they they go on it
And we wondered if the sodium load was ah to great for someone who has a brain tumor, I mean uh, you know uh sodium load will increase your blood pressure, and these people have extra things in their brains that probably won’t react well to swelling, right, and and wont react well to pressure, so we were wondering, if in fact you don’t have to reach the full dosage in order to have uh severe side effects
Ummm, you know maybe you haven’t reached a therapeutic dose level, but that doesn’t mean that it didn’t have an effect on her
And you can clearly tell, that, you know in the videos, well at least the videos before the family took it down, that she was lethargic and a little bit out of it, she uh the the difference in her conscious state was no noticeable for anyone to see
Ummm, to, you know where she had been up and about to in her bed kind of slurring and and, and and and, in fact just disoriented, just looked like someone had taken the piss out of her
I mean, ummm, so that’s, that one, ummm, you know the critique that, reaching therapeutic levels and having a biological effect on someone are are clearly different things in her case
Uhmmm, now I never went on you know on to say ummm that uh she had uh reached therapeutic levels
Uhmmm, I I think as far as I went was that she went, she paid her $30,000 dollars and then she died
Uhmmm, and and and what part of that’s not true
Okay, so, um, going back to Amelia, um, some of the the most um I think the most serious charges is that we see a uh repeatedly in his uh uh stories of his patients, um those are all cited, those are all backed uh by, you know, um at least as good as anything the Burzynski Patient Group has ever done
Uhmmm, something that we see over and over are patients reporting over and over that signs of getting worse are signs if getting better
Um, in particular a, uh report that’s very common from from patients is that the center of their solid tumors are breaking up
One of the problems that we we we see is that that is more frequently a sign of ischemic necrosis that the tumor has outgrown its blood supply and that it’s dying on the inside
And when you see something like a 5th of the patients who we’ve been able to to document, reporting this excitedly, we get extremely concerned about what’s happening
Uhmmm, what part of that is not absolutely terrifying to you
Well, the the yeah I’ve never seen anyone say that the purpose of the antineoplastons is to cause uhhh, you know, to restrict the blood flow to the tumor and and and uh cause it to die that way, which is certainly one therapeutic approach that’s been, that’s been floated and research has been done on uh and might even be promising and uh what he’s saying is that cancer is caused by a lack of antineoplastons in the system and that basically what he is doing is antineoplaston uh uh supplement therapy uh rath, what’s the word I’m looking for, uhm uh, replacement therapy
Uh and there isn’t a doctor on the planet, uh not a medical specialist on the planet, who, I, who has identified at at as a contributing factor as a contributor to cancer or antineo or lack of antineoplastons
So
Why isn’t he, you know, you understand that these doctors, ummm like nothing is true or false because a doctor says it is true or false
Uhmmm it’s it’s it but when the entire medical community uhhh who are des are desperately are are every bit as tired of seeing patients die uhmmm and seeing patients suffer or as anyone else’s families are you you imagine what an oncologist sees in that office over the course of of a year and there’s going to be unimaginable suffering
I’m sure that they’re tired of that
And that they would, you know, that if there was the slightest hint that antineoplaston deficiency was a cause of cancer that it would make it into the literature, with or without Burzynski
Uhhh ummm, why should we trust him when he has uh the sole uh the only person who had identified antineoplastons as a contributor to cancer when he is the sole manufacturer of the of the therapy uh when he is the uh sole prescriber of the therapy and when he is, where the sole distributor of the therapy from his pharmacy
He’s read everything
I think
Can you go ahead and send me that link that that I saw in the chat that you had uh posted a couple of times in the chat
Could you send me that link, to that publication
I can give you a minute to to go find it if that’s
That would be good
Uhmmm
Well, yeah that’s a, that’s you know one of the major problems that this this cancer has is the location is such a pain to get to
Uhm, and often when we are talking about these cancers, the thing that gets me over and over and over, and this is something that I’ve learned from from working uh with others on the Burzynski Patient Group is what’s it like to be a cancer patient, only by proxy, man I couldn’t imagine really going through this myself, and, you know I’d hate to see my family go through this
That these people are at what could be described as a low point, they’re um uhhh, you get a diagnosis of uh brainstem glioma the prognosis is very bad
Uhmmm, there are only a few cases of people recovering from that, I mean they’re there uhm uhhh but, you know that it’s an, it’s an extremely grim prognosis
Uhhh and I worry that when they’re in that desperate state and especially let’s talk about the children, you have these kids who are uh you know 2 and 3 and have had this, you know uh awful diagnosis and the parents are willing to do literally anything to keep their kids alive
What protections are in place for patients as far as that these kids are and and their parents are protected
Who had the better results ?
Okay
Hmmm, yeah, the, Guy Chapman has just um uh tossed in a a, a comment
I guess uh that there are a lot of people who wanna talk to you (laughter)
Uh, Guy Chapman has just jumped in and said it looks like you forgot the phase 3 trial is withdrawn and none of the phase 2 trials were published
Uhmmm, this, this is not a minor thing for for for Skeptics
This, this is exactly what will convince us to get on board the Burzynski train is the publication of these trials
But even the preliminary trials, one has been finished, and none has been published in its entirety for over 15 years
When you consider that this is a, as you just pointed out, this is a a cancer, the, especially the brainstem gliomas
That these cancers uh the cases resolved fairly quickly, we know what the outcome are fairly quickly
Ummm, do you have any sense of when these trials are going to be published ?
From Laura ?
Right
When you, when you think about a major, sorry, go ahead
Yeah, right, uh
Antineoplastons has a better rate ?
Right
Right, one of the things that that there there are 2 points to be made here
Uhm, the 1st one is that major pharmaceutical companies that are getting this accelerated approval have a track record of producing results which Burzynski does not have
Secondly, when it comes to ummm the rates of antineoplastons, how can we possibly say without a single published trial he, that he has an improved rate over Temodar or anything like that, and that’s exactly what would show to us whether or not his rate is better, the the types of publications that he’s done, that look really good on paper, ummm, to the to the, the common persons eye are these case series where he goes through and picks out people who have happened to have survived
But what that doesn’t tell us is whether or not the antineoplaston had anything to do with it
What you need to do is go and separate the background noise, the random weird rare but very real survive, unexpected survivals that occur, and separate those, uhhh, from any effect of antineoplaston, he’s never done that
But if you think about that, I mean that if it does have a a an improvement rate above uh other treatments
That still has an improvement rate, you know, that, that would give another option to people, ummm, even if in the aggregate their rates aren’t better
It might work on some individuals tumors rather than on, you know, you you it it is it taken as a, as a lump but extend life by uh quality of life for 3 months or something um in some cases but, you know, it it still has an effect, a real effect, and deserves to be out there
That’s a long time when someone is dying
Well, one of
One of the problems that that doctors have in in this country when it comes to doing ummm antineoplastons studies to verify any any effect that uh Burzynski has uhhh I i think back to the one where people say well that the FDA sabotaged his trials, and
Well, if if you think about it though, um, the, the proposed action as I understand it of the antineoplaston is that it’s a deacetylase inhibitor, which slightly unspools DNA, that allows uh, which would allow uh proteins to get into a pair of damaged DNA
And we have drugs that do that which carry a much lower sodium load
Uh, um, it, that would have a therapeutic effect on and that the risks outweigh the possible benefits of using this one particular drug
Um, I’ve seen any number of people looking at um, if you look at the Luna ah Pettiguine uh uh story on The Other Burzynski Patient Group um you see that the doctor is absolutely horrified by the insane sodium load that that Burzynski’s patients are carrying
Um in in some ways that that sodium load is uh leading people to constantly drinking up to I’ve seen 12 liters of water a day
That’s not necessary for other deactsylace inhibitors
Um the, why would you prefer that to to another drug if it did essentially the same thing, that didnt have this massive side effect ?
thats not necessary for other deactsylace inhibitors
Well that sss I believe that that’s proposed by the researchers, the design trial, you know they they sign off on it but that is is, is up to uh Burzynski uh my uh David James @StortSkeptic on the
ah he has asked everything that Burzynski does looks sort of like the behaviors of pseudo-science
So what we’re saying uhhh he does uh uhhh Burzynski like for instance like I said he has vertically integrated, ah, he controls all parts from identification to the creation of the drug uh to the diagnosing uh well he doesn’t do the diagnosing but he does um um prescribe and distribute, he does all that vertically, which is actually something that snake oil salesmen do
Another thing that that’s a red flag in Skeptic circles is that his one compound seems to be a sort of panacea for all sorts of different types of, of of cancers, um where we know that cancer has a a varied uh, uh, ideology and and the uh panaceas are are are to be and a variety of different types of causes um, in fact in any one tumor you would, you could say that these, these tumors are are completely uh heterogenous
The idea that there’s gonna be one knockout, it seems rather unrealistic
Um, additionally he charges immense amounts of money for this drug, um, even though the components cost pennies
Um, on top of that, um, there’s something that he asks for a a huge payment up front
That’s something that’s been warned against for generations of uh by anti-quack um uh crusaders if if they’re asking for everything up front, then be afraid
Ummm, another thing is that uh the kind of cult that’s sprung up around Burzynski, uh, one that is immune to uh criticism, reason, and pits people who are doing standard cancer research, as enemies, um, creating a black and white version of the world where there are good people and there are bad people
There are people who are fighting the disease, and then there are people who are really helping the disease
I mean, if you look at the, the new web-site by the Burzynski patients fighting back group, they say support the cure not the cancer
That’s a manikin world-view of black and white
Um, these are all huge red flags, that you’re dealing with a quack
Um, why hasn’t Burzynski done anything to change that ?
Right
Well, there, this is important
This is really important though
Wha, when she’s talking about, that’s Luna Pettiguine’s mother, is is talking about the costs there
Uhmmm, you, when someone is not insured in in this country,
Ahm, the, the the base cost that that’s calculated is, is the hospital only expects to get a fraction, a tiny fraction of that back from the insurance companies, and that’s why the costs are so inflated
Um, usually, when a patient is self-pay there is a self-pay price which is a more reasonable price
Additionally, all of those therapies, have demonstrated efficacy, and if Burzynski were to demonstrate his efficacy, $30,000 dollars to start on a life-saving treatment for a child would be a steal, and he would earn every nickel of it
Um, so, those arguments hold very little weight with us
He has a a an enormous house that’s valued in the tens of millions of dollars, he could do that if if the other, the other thing he could do, and this, we would love to see him do this, wousa, would be apply to Federal grant
That, that would be amazing, if he could get a grant to study this stuff
But, you know, um, I I don’t think he’d be able to get one, I don’t think he’s shown uh that he can carry off a uh a research program responsibly
Uhmmm
Well
Oh he, have you noticed the the, the thing on his web-site where if you make a donation to the clinic it goes directly to him ?
Right
You know, you know
Ummm, o-kay
Uh, I want to turn this over to the people who are watching
Um, I want to give them a a chance to address you as well
Uhmmm, hi everyone
Uhmmm, so, um, let’s, let’s wait for for that to roll in, and I do wait to go back to the, the the, the and let’s be very specific about this, the the things that you see on The Other Burzynski Patent Group, a patient reporting that um uh getting worse is getting better
How do you explain that ?
Well that’s just a known side-effect, your going to know that going in, but we actually have people say
Are there, why why why not, these people, see this is the thing though
The reason that site was started was because the people that don’t make it don’t have a voice
And when you, when you whittle away, when you only look at the at the, the positive outcomes, which is exactly in Burzynski’s favor to only look at the positive outcomes, and to have no sense of how other people’s diseases progressed, right, you’re gonna get a skewed and inaccurate version of the efficacy of this particular drug
Now lets lets lets go back and not talk about Laura, lets talk about these patients who report symptoms of getting worse, as if they were signs of getting better
Some people say that oh it’s a healing crisis or it’s progression of the disease
Or other people say it’s breaking up in the middle, hurrah
No, it’s actually a tumor that’s growing
That record there, that’s being left by patients, whose stories are every bit as important as the as the stories of the patients who have lived, are painting a completely different picture
How do you explain that ?
Are they feeding these people their stories ?
Are they feeding these people their stories
Okay I’m going to go back, I want to point something else out to you
Um, I have to, I don’t remember the exact patient so I have to go back to my web-site to take a look at it
Um
Because we are, because we’re on a Google+ stream that that’s a lot of data it takes awhile to bring up my, my site
Let me
Uhmmm
Well, that seems to give him an instant out, no matter what happens
That turns his claims into something that’s unfalsifiable
If I could give you an example of what unfalsifiable is
Um, and I’ll I’ll draw an uh, uh, case, uh hypothetical case of um uh proposed by Carl Sagan as the invisible dragon in your garage
If you say you have have a dragon in your garage, um, you know, you should be able to go over and verify that there’s a dragon in the garage
So let’s say we go over to Carl Sagan’s garage and, you know
Well, I don’t see anything
Well it’s an invisible dragon
Well okay, well then, let’s uh spray paint it
Well, it’s incorporeal
Well, uh, let’s measure for the heat of the breath
Well it’s heatless flame that it breathes
And, you know, okay, well then we’ll put flour down on the ground to see that it’s it it’s standing there
And, oh no it’s ah it’s floating
Well, you know, at some point, when you can’t falsify something
When you cannot, even in principle, prove something false, it’s indistinguishable from something that’s not there
And that kind of out, that oh well the tumor can keep on growing
Th (laugh) that that that’s an invisible dragon, as far as I can tell
A every time that I and and and and , and David points this out, that um, you you know your not going to speculate about the the FDA but then at every turn your invoking the FDA as being obstructionist
I, I just find that to be contradictory and and self-defeating
Um, let me see
Well, that’s not necessarily true
I mean uh when it when it comes to the case um I’ve i’ve talked to oncologists about this
And when it comes to uh for instance in in this case it sounds like it was a pediatric patient who was dying, ummm, who had died, ummm, the,
the 1st inclination is to ascribe the death to, um, to the tumor, which actually, would be to Burzynski’s benefit if there were other cases, I’m not saying there were, but if there were other cases where this type of complication arose, and it was ascribed to the tumor they might well not do it, uh, do an autopsy
Um, it’s ah as you could imagine it could be very difficult for the families to do that especially when they have ooh ah, a possibility of what, you know, led to the ultimate demise, that didn’t involve them ultimately somehow being responsible for it, right ?
So, it it it doesn’t seem to me that necessarily an autopsy would be um a a done deal
Um, let me see
No we don’t and it would be irresponsible to completely speculate on on, on, the outcome of that uh, uh, uh, individual patient, I am still scrolling through looking for this story that I wanted to talk about
Uh, and, I guess I’ll
It should be in Amelia’s I I, I packed Amelia’s story with all the stories, um, that I could find um in what we’d written up already
Um
Hold on a sec
She is a cute kid though
Um, alright
Now, our favorite oncologist (laugh), as you keep putting it, um, uh, with with the Amelia story, um, uh, was able to correctly determine that the Saunders family, had a, did not understand the significance of this cyst that had opened up in, uh, that had opened up in the center of the tumor, in fact they were ecstatic
They were delighted
Um, the family, of Haley, um, S, also
Uh, the the family of Haley S., also, had the same reading given to them
Um, the same diagnosis uh same prognosis was to, was given to Justin B in 2006
A similar cyst in Lesley S’s story uh ah, was in 2006
Um, and that kept her on uh treatment for a a another month so that could be another $7,000 some odd dollars
We same thing in the, in the case of, uh, Samantha T in 2005
We see it again as far back as 1994, in Cody G’s story
And then lastly and and the worst uh thing that we’ve seen, the patients report that Burzynski himself told Chase uh Sammut
The exact same thing
Um, and that was a
Have you read Chase’s story
It would stick with you, because that case is grotesque
The parents, uh, there was even a uh, uh, a fight over whether or not the parents should be allowed to continue treating this kid
He was basically lying, uh, in a uh uh brain dead uh for all intents and purposes, uh, in a in a coma uh without possibility of reversal, in his parents living room for months
Um, eh, all the while, he’s still on the, uh, well I don’t actually, I can’t say that, I don’t exactly know if he was on the treatment the whole time
Um, but, we do have this pattern, that is there, of people believing, that this particular pattern is, uh, progress, a a is not progression of disease but is is inducement to to stay on, um, eh, and this has been going on for decades
Eh, eh just based on what we’ve been able to find that patients have been reporting this for decades
At some point, you would think that a doctor would realize that perhaps what these patients are walking away with is inaccurate
Why hasn’t that changed ?
E wel that that that that’s not it
This is this is like the 2nd day of oncology class, that that’s what the tumor looks like
People are reporting that the tumor is no longer growing, um, or that the growing has slowed after they’ve started
Well, okay
There, there is an explanation for that, and why you can’t take that as necessarily being evidence of efficacy
Ah, the tumor grows exponentially while the resources are available to it, but then it reaches a point where it’s a self-limited growth, so it, the time between uh doublings in size decreases logarithmically
Um, so this is, this is like basic tumor physiology that we’re talking about, and his patients don’t leave his office, knowing these facts, for decades
This doesn’t have anything to do with the, do with the drug
This this
But, but when it’s, this treatment is working or this is not evidence that the treatment is working
That’s pretty basic
I mean we’re not, we’re not talking about deactsylace inhibitors or anything like that were you’d really need to know something about
This is, whether or not, you’re getting the outcome that you want
This is the whole reason for going
And it has nothing to do with the with the with the drugs
Which is, which is like which we just pointed out was a was an invisible dragon
you’re you’re you’re assuming
You’re you’re you’re assuming that
You’re assuming that
Um, I’m not assuming that
Ultimately it would, but whether or not it it it had a genuine therapeutic effect is a different matter all together
Um, this, what would, what would convince you that you’re wrong
So you’re saying because the Orphan Drug Designation and the face that there’s a phase 3, therefor it works ?
So what you’re saying is there’s nothing that would convince you now, that it doesn’t work
O-kay
Um, it’s it’s it’s not the FDA’s, but you understand it’s not the FDA’s job to tell someone that their drug doesn’t work
it’s it’s it’s up to Burzynski
It’s up to Burzynski to show that his drug does work
And it’s always been his burden of proof
He’s the one that’s been claiming this miracle cancer cure, forever
Um, I don’t know if you’ve read Jaffe’s book
There seems to have been a lot going on there you really should look at it because it’s it’s it’s kind of revealing
Um, that that that it seems that there was a lot of political pressure applied to the FDA which may have been, uh, uh, have influenced the way in which these these trials were approved
I I would say that it is a genuine con uh uh bit of confusion on the parts of Skeptics
We don’t know why the phase 3 trial was approved
I don’t know that we’ve seen even the phase 1 trials, we don’t know why he’s getting a phase 3
And there’s a real story in that, we think
Um, that we’d love to see, however we can’t see, however we can’t see it because of proti protri proprietary uh protections that the FDA is giving to Burzynski, right ?
They’re not sharing his trial designs because they are his trial designs, right?
That the makeup of his drug that he’s distributing are his, uh design, and his intellectual property
So the FDA is protecting him, uh from outside scrutiny
While you may imagine that that, that that the FDA is is somehow antagonistic toward him
They’ve given him every opportunity, over 60 opportunities to prove himself worth uh their confidence and hasn’t
Um, but I definitely recommend that you look at Jaffe’s book and you will see, I think, um that um it’s called um, uh Galileo’s
You know what it’s called, okay, yeah
Um, definitely look at that
Um, you, you will see, the ways in which, the way that we got to this point, isn’t necessarily having anything to do with the efficacy of the drug
That comes across very clearly
Um, you, you mentioned it yourself, he he’s done well to listen to Jaffe’s advice, right ?
So, there there’s a lot to that
Um, uh, but yeah, let me go back to the Twitter feed
Um
Well it sounds to me like they’re they’re not um, the the the you know, they’ve put the clinical hold on now because they now have evidence that somebody may have died because of the treatment
Um, I don’t know what the state of that is right now
Um, uh, oh my gosh, um, let me see
Someone has just sent me a, a ah a link to, are you following the Hashtag, as this is going on
Okay
I’m doing, I’m doing the 2 things at once and it’s um, ok ok well it’s well ok I can’t I can’t go in and read that right now
Um, I would, ok let me tell you exactly what it will take, for me to come around and promote Burzynski
Um, for me, he needs to get a publication in a uh, yeah, uh uh uh publication in a peer-reviewed journal, a respected peer-reviewed journal, not like the the Journal of Medical Hypothesis or things we just made up
Um, something, you know, a a good, respectable journal that oncologists would read, that research oncologists would read
I would need an completely independent group to replicate his findings, and then I’d be all for it
I would say that right now, the business model that the Burzynski Clinic seems to depend on, as best as I can tell from an outsider, that, um, uh, that it depends on people paying money up front
It doesn’t depend on him developing and taking away a viable drug, that he can market to the entire world
His business model as best I can tell, is to keep it in house
That seems, if it works, if his drug genuinely works, and he hasn’t sent it along to mass approval, where he gets, for a couple of years at least, you know, exclusive rights to produce and sell this stuff, for one of the most intractable diseases, uh that man eh can can can, you know, can get, um, that suggests to me that there’s something else going on here
Now, someone has just sent a a note, uh that he has failed 3 different Institutional Review Board audits; this is Guy Chapman, uh no other institution has a 3 for 3 fail, according to to Guy iye he knows no other one
Um, that 45% of phase 3 clinical trials fail due to deficient phase 2 design
Um, he has an approved phase 3, but phase 2 was deficient so phase 3 fails
Do you think that that could possibly have anything to do with why we’re not seeing the phase 3 advance
He’s claimed
He’s claimed
That’s a different thing altogether
And in fact
Well, you understand why they do that, because in order to, it’s
No, they do do this with other drugs, well, it depends on the type
Some drugs it’s ethical to give something completely questionable, what they want to make sure that they at least get the standard care, you know which includes radiation
Um, and radiation does seem to extend life, reduce the size of some tumors some times
Um, do you concede, that in order to have a phase 3, you do not need to have a successful phase 2 ?
When 45% of phase 3 fail because they have a deficient phase 2 design, do you concede that ?
Well, ok
It doesn’t matter where
It doesn’t matter where it comes from uh, um
So-kay, um that would be shooting the messenger as opposed to dealing with the question, but
the idea, the best, well, the best, well in that case the best response is “I don’t know”
There’s something that that we don’t know, you’re coming, honestly we didn’t know what to expect when we talked to you
We, were looking at the design, of your web-site and wondering whether or not we would be able to get a a coherent sentence out of you, because the web-site is disorganized, uh
Um, at at at at least it’s the organization is not apparent to the readers
Um, and um according to
No, that is tied together
But let me, we know that that the the, the central concern is Burzynski
Ah, the source of this ah of of those #’s that I just gave you, Chapman has just updated me and he says um that it is, and I’ll go back to the, the ADR research . com issues in clinical research, so it’s the question, Bay Clinical uh Research and Clinical Development, a white paper called “Why do so many pase 3 clinical trials fail ?
Uh, it’s prepared by Anastassios Retzios, Ph.D
Is Anastassios Retzios reliable ?
There is a correct here
Exactly
That’s the right answer
You don’t know
You don’t know
You need to look into it
Alright ?
Before you dismiss it you have to look into it
Everytime somebody throws uh uh something to me, I have to look into it
That’s just, it’s my responsibility as a reader
Um
What, what stuff would you like
What stuff would you like me to do ?
I generally, I don’t read your blog
Uh um, alright
Okay, I’ll look at that, and I will respond to it once I’ve taken a look at that, okay ?
Um, and I’ll respond on your web-site
Um, seems only fair
Um, one question I’d wondered, what is the Didymus Judas Thomas reference to
Oh, so this is the Doubting Thomas
This is the Doubting Thomas
Okay, so this is the one, you show me the, you put your your, the, your hand inside the wound
You know, Jesus says, basically, ok, bring it on, check me out, right ?
Okay
Alright
That that, I didn’t, I didn’t realize that he was also, that that was the same guy
So, it’s it’s the Doubting Thomas
Um, what we would say, um, is that if Burzynski is the savior that he claims to be, that he should, open up his trials, he should open up his uh research uh protocols um and just say, “Look, bring it on”
Check out these wounds
But he’s never done that
Instead he he he wants us to just take the words of of of of his apostles
I don’t necessarily trust his apostles
I don’t think that they’re unbiased
I wanna see the data
I wanna see the the wounds in his hands and the the mark on his side
Oh, hey when when we talk about The Other Burzynski Patient Group, I don’t make any pretensions to make that my site proves anything
I I I really don’t
It’s not my job to prove anything
It’s Burzynski’s job
It is a researchers job to prove these things
But we just pointed out, we just pointed out, that the FDA, often approves, phase 3 trials, based on flawed phase 2 clinical trials
That is therefor a real possibility in this case
Yes you would
T t and what I would honestly expect and hope, is that you would be honest about this, to yourself, and and and that’s the thing we don’t, we often don’t realize that we’re not being honest with ourself
I try to fight against it, constantly
But, um, uh but the way that you’d earlier phrased your uh your response to “could you possibly be proved wrong ?”, . . really did exclude other possibilities of of of of yourself being wrong
So if the FDA
Well I’m not talking about the Guy Chapman
What you off, when I asked you, yourself, you know, what would prove you wrong, you said that the FDA hasn’t approved a phase 3
Well, ok
Let’s let’s back, let’s back up
What would the FDA, what happens if the FDA occasionally op op opposes, approves uh phase 3 trials, based on bad phase 2 trials
Would that be, would that cause any doubt in your mind ?
About the efficacy of ANP
Yeah, hello, yeah, you’re back
Yeah Google+ is a little wonky sometimes
But, would, does, if you were to learn, that sometimes phase 3 trials, uh, are approved, and failed, based on flawed phase 2, would, would that make you reconsider your position of the phase 3 being evidence that it works
Uh um could you send me that link, the, the, um . me see
I’m just looking at other things that are coming in on the Hashtag right now
Um, so the ANP is Orphan Drug status but is it Orphan Drug for glioma ?
Is it sodium phenylbutyrate or is it the the versions of the drug, the AS10 stuff or A1 or whatever it’s called ?
Okay, that’s what has Orphan Drug status
Alright, I’ll look into that
I hope somebody is writing all this down out there, so that we can go back and look at these claims later, right ?
So, oh, um
Do you have any questions for me ?
I’ve spent a lot of times asking questions of you
Mhmm
Guy Chapman, throws up the the, the comment, permission to investigate is not evidence of anything other than evidence of a valid protocol, not a uh, evidence of efficacy, in and of itself
That’s another comment
Um, alright then, this is your chance t, there are lots of people have lots of questions about me out there
Uh, about what my motivations are and such
I might as well put that out on the table just so it’s on the record, is that I am taking exactly no money from anyone for this, and have gotten nothin’ but grief from a lot of people, even people who, even people who support me have given me grief for this
Um, just so that you know, um, there have been, some of the things that have happened, oh, this is an important point too
Um, that when we have criticized this, uh, a # of us, especially Gorski, uh myself, uh Rhys Morgan, uh, um, and and uh Popehat, the the lawyer, blog, uh, um, who else was on there, um, oh, the Merritts, uh, t, uh Wayne Merritt, and his family, people have been critical of of of Burzynski have faced retaliation for opposing him ah and intimidation, and including, um, I had my uh a couple weeks before Christmas my, my, the Chancellor of my University was contacted via e-mail, and uh Eric Merola said that I had been um, uh, been spreading mis truths about Burzynski, that I had been a be, on my my show um had said things that were demonstratively untrue, and he also said that the drug was FDA approved, which it, you know, that’s not right
But um, he said that he was gonna do, talk about me in his new movie, in, uh, relat, in millions of homes, um, and he wanted to get a statement from the University
The University of course ignored him, and immediately let me know that I was going to get smeared
Um, I consulted my lawyer and uh uh, you know, the best course of action was figured out, and um uh a Gorski has had his accreditation board contacted, he’s had his bosses contacted, Rhys Morgan received threats of liable suits from somebody who had been hired, by the clinic, to clean up his on-line reputation if he didn’t take down his on-line review of Burzynski, uh, had his a picture of his house sent to him, clearly the message being, “We know where you live kid,” uh, Wayne Merritt; a pancreatic cancer patient, this is something that, that people generally, do not recover from, like generally, die from, received phone calls at home, from, this individual, threatening him with lawsuits; he doesn’t have a law degree so he’s misrepresenting himself
Um, but all of this, was done, to critics
Do you think that is deserved ?
Do you think that that is right ?
Mhmm
Well to be fair
It it it doesn’t strike me as necessarily a “Free Speech” issue, you know
Was it down-voted ?
No
Mhmm
Mhmm
Well we do have for for for for one thing, um, I guess to understand is that we are uh motivated by um uh a respect, this is the one thing that that all Skeptics I think um are uh respect critical thinking, um, and um respect scientific uh a we we’re mostly scientific enthusiasts, there’s some Skeptics who are not um, uh, you know oh u space nerds, or whatever who are um just sc scholars and the humanities but for the most part we all respect scientific consensus and we respect scientific method and have an enthusiasm for living in the real world, this is something that like all of us us are about
And to that end, sometimes that influence is how we run, is how we decide to run our personal web-sites
Um, uh, that whether or not we want our, to give a platform to people who disagree with us, um, you know, uh, when we do, uh . . it it is our sandbox, you know, right ?
This, this, we’re allowed to to let whoever we want into our sandbox if we, you know, uh if we want
Did he, did he leave them up ?
Did he leave them up ?
Right, um, do you think that he is required to answer you
Right
Mhmm
Um so a a question uh why were why do you have so many Twitter and Wikipedia sock-puppets
Wikipedia
You left Wikipedia
Mhmm
Um a
Uh We have uh a response from David James, everyone uh gave you a fair shout
You were a spammer plain and simple
You couldn’t, you couldn’t
work out your questions
Twitter does not
Twitter does not block people for for arguing
Only for spamming and policy violations
Mhmm
Okay
Um, let me see
Each new account was blocked for additional violations of policies
Um, this is a uh uh referring to the Wikipedia rules too
Um, so
Um, Wikipedia, do you know why um they’ve locked the Burzynski page ?
Did you notice the part where he threatened, did you notice the part where he threatened to expose Wikipedia
We have to, well, they they uh are looking that it’s not one-sided information they want to show
Like they discuss, there is controversy about this guy
Yeah, Jaffe’s on there
Jaffe’s on there
uh well you could add that if you hadn’t gotten blocked
Okay
Um, so, who are you
She’s gotten threats
So we don’t know who you are
Like, she has suffered at the hands of some really mess, and she’s also, you have to realize she’s in the U.K, where libel laws are very lax at this point
That’s changing, ah, but uh, the the legitimate criticism, there is a big case last, me maybe 2 years ago of Simon Singh, talking about an alternative therapy, and, um, he was just saying that there’s no evidence for it but it’s promoted by um chiropractors, or something, or something like that
And he got slapped with a libel suit that cost him several years of his life and a lot of money
Um, so, there are several reasons why someone in the U.K. might uh be uh reticent to use their real name um, uh, and legitimate reasons
Um, in the U.S., I’m not sure that there is
I’ve been using my real name for a long time now
Um, you know, Gorski blogs under his real name, and is critical of uh, uh, also, let’s face it, everyone know, knows who “Orac” is
Um, how do we know that you don’t work for the clinic ?
Mhm
Well see, one of the the problems is, Ju, I don’t know if you were around for the BurzynskiSaves thing
Did you ever see that account ?
Mhmm
Right
Oh no, I mean you have a right to do that but but I I’ve found that posting under a pseudonym diminishes my credibility
Um, so, . . the quote was uh um, uh, “Happily promotes bogus therapies,” was Simon Singh’s quote that got him sued
Um, but Josephine Jones does it to, quote “protect her family”
Um
So there’s that
Um, are you afraid for you’re family ?
Um, you don’t see that there would be anything to gain from, from going on-record ?
Um I I haven’t, I’ve never, honestly, I’ve never seen a Skeptic actually go after a person individually
Um, you know, uh, you, unless they were doing colossal harm to people
Um, to to focus on an, uh, let’s say, call someone’s work for um, yeah
Cite one example, of a Skeptic making shit for a Burzynski shill or anyone else in real life
That’s a quote
That’s, that’s something coming in from, from Guy
Like had anyone ever contacted Sheila Herron, or has anyone to to um, go after her job, or go after um, you know, my brother has gotten stuff from people
He didn’t tell me because he didn’t want to upset me, but my brother gets things from Burzynski supporters that are violent and threatening
I get letters telling me that I suck cancer’s dick
Um, I I’ve all sorts of things um, and I just, I’ve never seen that, that intrusion into real life on the part of uh, um, uh, Skeptics
I’ve never seen them doing that type of of of stuff
I’ve never seen them threatening bogus lawsuits
Um, and I I I wonder there, if there is some sort of, what do you think accounts for that, that difference?
Mhmm
Mhmm
I’ve I’ve I’ve shown up on, you know, as you, as you might, I imagine you moni, you monitor the Hashtag, right ?
Okay
Um, which is, which is your right
Um, uh, but every so often I jump in and say, you know, this movie has some flaws in it
You know, that’s something I say rather frequently
Um, and I invite people, if they’re interested, to take a look at a couple of links
I don’t, I, you’ll notice that I no longer force people to like, “Well how do you explain this ?,” because that doesn’t seem to be very persuasive, or work at all
Ah, only people who are open minded to having their mind changed, those are the only ones I want to talk to
So I give them a choice
Kind of like Morpheus in The Matrix really
Um, b, that was a joke for me
Um, um anyway
Um, but, it it I, honestly, I would encourage you to go on-record, um, but I have, less than nothing invested in that, so, um
Uh, what’s next for you
Well what happens
Well what happens if he doesn’t understand what you’re saying ?
I mean one of the
I mean seriously
Well, one of the problems I think that a lot of Skeptics have had, in in back channel discussions about this is that we don’t understand exactly what you’re saying
We certainly don’t understand why you’re so attached to him if you’ve never had any uh, you know, close dealing with uh, uh, with Burzynski
We don’t really understand that
Actually, especially when you consider, that all the information that we’ve put forward, that we’ve backed up with statements from uh, you know, uh, it, it, the statements that we have from from patients saying that you know, we’ve we’ve, we were told that, no that’s not exactly, they put it usually that but that that we believe that getting worse is getting better
Like how could someone continue to defend someone, when we pile up all of these different, you know, sources, saying the same thing ?
It it is, it is beyond us and we wonder if there’s absolutely anything that we could say that would convince you otherwise
But, I mean, but that means
Everything on The Other Other Burzynski Patient Group is referenced
It goes
There’s very little on
thehoustoncancerquack
There’s very little on
thehoustoncancerquack in the 1st place
Eh, right
The they both go to the same place
Uh un but, you know, we, the thing that that totally befuddles us, and is just endlessly frustrating, is like how many more examples, of patients believing that getting worse is getting better, and it’s not us saying it, it’s the patients saying it
And how many more of those patients do we need to to give you before you will like reconsider that perhaps you might be wrong ?
I don’t, the thing is though that, that that’s a inver, shifting the burden of proof off of Burzynski
Burzynski has to prove them wrong, has to prove him right
The FDA is not there to say this doesn’t work
The evidence would be
The evidence
The evidence would be phase 2 trials
And ev the evidence would be a completed and published phase 3 trial
That’s not forthcoming
The phase 3
You don’t know that he’s trying
He’d start completing these trials
And he would, he would be soliciting um, uh, lots of um, uh, you know, you know he’d be putting out papers constantly um and if the the British Medical Journal example’s anything uh representative of how Burzynski works, he’d immediately tell everyone that his he’s being . . blackballed by the, by the journal, even when it’s just a courtesy that he gets a a rejection
So, I mean, honestly, um, saying “Well, when the F, FDA tells you that it doesn’t work, the FDA’s never gonna say that because that’s not their job
So, given that what would, how many more patients do we have to show you before you consider that you may be wrong ?
That’s not an option, because they’re never gonna do it
They relinquish, a lot of authority, over to Burzynski, and his Institutional Review Board, which, I would mention, has failed 3 reviews in a row
Right ?
It is Burzynski’s job to be convincing
It is not our uh, uh, it it it he hasn’t produced in decades
In decades
In hundreds and hundreds of patients, who’ve payed to be on this
Hell, we’d we’d we’d like a prelim, well when you’re talking about something that is so difficult as brainstem glioma, that type of thing gets, really does in the publishing stream get fast-tracked there
they test it
Yeah, and they they they want uh, that was evidence of fast-tracking is what, that rejection was uh e was very quickly
Um, so, uh, uh again, the FDA is not the arbiter of this
It’s ultimately Burzynski
So, how long will it be before Burzynski doesn’t publish, that you decide that uh perhaps he’s he’s, doesn’t have the goods ?
You’ve been speculating about what the FDA’s motivation are like crazy
Why not speculate about Burzynski a little bit
Well actually I’m not even asking you to speculate about Burzynski, I’m only asking you to tell me, how long would it take, uh how, for him to go unpublished like this, um, for this long, before you would doubt it ?
What ?
But these but but but that doesn’t have any bearing on
That doesn’t
Oh I’m not asking you how long, how long, would it take you for you to start doubting whether or not he has the goods ?
How long would it take ?
It’s a it’s a it’s a question that should be answered by a number uh uh months ?
Years ?
How long ?
It’s been 15 years already
I could push it back to 36 years
He hasn’t shown that it works for 36 years
I can do that
I was being nice
Perhaps based on bad phase 2
He withdrew
He withdrew the the phase 3 clinical trial
I that before recruiting,
although I’ve seen lots of people say they were on a phase 3 clinical trial
I wonder how that happened
Uh did do do you think that if they thought that he was a real doctor that they all would have refused like that ?
He’s changed things
That The Lancet is a top-tier journal like New England Journal of Medicine
It’s basically be, besieged by uh 100′s of people submitting their, their, their reports
Um, it’s just, you know, let’s say he, someone has such a thin publishing record as Burzynski does, do you think that it’s likely that he will ever get in a top-tier journal ?
What about the the Public Library of Science ?
It’s not the only journal there
What about BMC Cancer ?
There’s lots of places that he can go
Um, and he doesn’t seem to to have evailed himself of that, as far as I can tell
And I would know because he’d get rejected, or he’d be crowing, you know
Either way, he’s gonna tell us what happens
He told us what happened with The Lancet, you know
I don’t have any evidence that suggests to me that he’s even trying
So let’s go back to this
How long will it take ?
How long will it take before you, the Japanese study’s interesting too because we should be able to find that in the Japanese science databases, and we can find, we can’t find it at all
We can’t find it anywhere
And, and those are in English, so it’s not a language problem
We can’t find that anywhere
We’ve asked
We asked Rick Schiff, for, for that study
And, and it hasn’t come to us
He is now I believe on the Board of Directors, over there
He should have access to this
We can’t get it
How how long will it take before you recognize that, nothing is forthcoming ?
How long would that take ?
Well, I mean, were talking about a blog here
We’re talking about life
No, we’re talking about a blogger’s feelings in that case
In in this case we’ren talking about, 1,000′s of patients, over the course of of of generations, you know
This is important stuff
This is not eh eh equating what’s happening to to patients with what’s happening to you is is completely off-kilter as far as I can tell
It’s nothing
It’s nothing like you not getting to say something on my web-site
You know
This is they they have thrown in with Burzynski, and they’ve trusted him, and he’s produced nothing
Nothing of substance
Nothing thas that has made all of that um, uh, n nothing th th th that uh his peers would take seriously
The other thing that that that strikes me now is that, you know, you you you you keep saying that, well Eric is going to to share things with you
Does it ever concern you eh uh eh occur to you that Eric might not be reliable ?
He then, and then he
And then he he, you know, the the the the dialogue that sprung up around that was, well see, he’s never going to get to get published
Well you’re just setting yourself up for wish fulfillment
You want him to be, persecuted, so you are ecstatic when he doesn’t get to publish, which is unfortunate for all the cancer patients, who really thought that one day, all the studies were going to be published
Where has Eric been wrong ?
It’s it’s it’s it’s a form letter
You know
They’re just saying, “No thanks”
“Thanks, but no thanks” is what they were saying, in the most generic way possible
Like I said, they’re besieged by researchers trying to publish
So, so, possibly
So possibly what you are saying is that they in fact have read it, and after having read it they’ve rejected it
Is that what you’re saying ?
Because that’s what peer-review is
Do you know it was the same editor, that it came from the same desk ?
You can’t make that assumption that that the form letter will be the same form letter every time
I mean you just can’t
I mean in in some ways we have a lot of non-information that you’re filling in, with what you expect, as as opposed to what’s actually really there, and I I I just think you’re putting too much uh stock in one uh, uh, in in in in this uh the publication kerfuffle
Um
Well, not necessarily
I’ve been in any # of professional groups where the organization is just not optimal, and publications certainly th there are all sorts of pressures from all sorts of different places
I I have no problems whatsoever with seeing that this might not be completely uh um uh streamlining uniform processes as possible
The fact that it’s not uniform, doesn’t have anything to do with Burzynski not publishing, not producing good data
Not just going to a, you know, god, even if, even if, let’s put it this way, even if he went to a pay to play type publication where you have to pay in order to get your manuscript accepted; and he has the money to do this, it wouldn’t take that much, and he were to put out a good protocol, and he were to show us his data, and he would make his, his his stuff accessible to us, then we could validate it, then we could look at it and say, “Yeah, this is good,” or “No, this is the problem, you have to go back and you have to fix this”
Right ?
So we really, every time we talk about the letter that he got, yeah that doesn’t have much to do with anything, really
We wanna see the frickin’ data
And if he had a cure for some cancers that otherwise don’t have reliable treatments, he has an obligation to get that out there anyway he can
And if if peer-review doesn’t, you know, play a, if peer-review can’t do it, you know, isn’t fast enough for him, then he should take it to the web, and he should send copies out to every pediatric, uh, you know, oncologist that there is
That’s the way to do it
Oh I, I I I certainly don’t think that he would put a lot of stock in it, but I, I, I know Dave Gorski enough, he wants this to work
He has patients who are dying, you know
And if if if let’s say that that Burzynski could get ah his gene-targeted therapy to work on breast cancer patients in in a reliable way, that would be, such a help to these people, that that Gorski’s trying to help
And, it it it doesn’t make sense, I mean, there, some of the best um, one of the the most important developments in medical history, was the development of of just washing your hands uh uh before uh uh going in and delivering a baby
Right ?
The guy who did it, was a colossal jerk, but it still worked and it’s the standard now
Right ?
Um, yea, it doesn’t matter now whether or not Burz, whether or not Gorski agrees with how Burzynski publishes
It’s the, it’s the data itself
If if Burzynski is is, is confident in his data, he will put it out there
Right ?
One way or the other
But he is a, the thing is, the thing is, you thing you have to understand is Gorski, Gorski is a genuine expert, in matters re re regarding on oncology studies
I mean, he has a
He, He’s able to convince people, he’s able to convince people, on the strength of his record, to give him money to carry out research
People who know what they’re talking about
To give him money to carry out his research
Right ?
Well what about all the other physicians, um, going back long before the Burzynski thing broke on-line
Of all these patients, with whom they have long-established relationships, and then doctors essentially after years, of treating these patients, basically saying, “I can’t work with you anymore if you go to Burzynski”
What about that ?
Di, are all of these doctors just as biased ?
Did he get burned at some point ?
We don’t know
Yeah, well, you wouldn’t expect Eric Merola to say that he got, that a doctor got burned
Would you ?
But he, he doesn’t have, he hasn’t given us his data
He’s given, he’s given, he’s given case studies
He’s done
Okay
Except for a ph, completed phase 3 clinical trial
Yeah
One of the things, one of the things that I’ve noticed going through these um, well, well there there is that
Uh, Guy Chapman, “It’s a blog, not a peer-reviewed publication”
Um, almost no treatment goes out without trials
Massive amounts of data are required
Um, so, it it is kind of, slightly disingenuous to hold uh Gorski to the same . . standard that you would, it on his blog
I think that professionally he would make, he he he would follow-up on these things, but u what I’ve noticed when you you mention these other people who are working with with Burzynski as co-investigators, the co- investigators don’t seem to have access to these, to these records
Um, you know, when they have to, when a patient has to, and often you have someone like a pediatrician, uh, signing on um uh to eh eh to work with with, uh and arrange care for patients when they’re out of state, away from Burzynski
Um, it’s it’s it’s often not an oncologist
It’s accurate to say that B Burzynski is not a board s uh certified oncologist
It’s accurate to say that no trial has been completed and fully published
Um, yeah it’s um, it it it if, all of the arguing on behalf of Burzynski doesn’t give him a single phase 3
It doesn’t give him um a uh uh of of a completed and and published phase 2
Uh, in in in that sense, you know, uh all the the the, you know, kind of back-peddling and and and trying to defend him is is going to, not going to help his case at all
You are, honestly as far as I can tell you are doing the um, you know, you’re you’re ah throwing up uh, uh, uh, you’re giving me another uh invisible dragon in the garage, um
What is the issue were not talking about
Yeah, but they
But they have track records that support the idea that you should trust them
Okay, so
What you’re telling me is that you trust the FDA to to be able to tell you when he’s not doing, good science, but also that you don’t trust the FDA
Do you see an inherent conflict there ?
Well, when I, whenever I would ask about, like, why would these trials aren’t happening uh and, you know, you say well the the FDA’s arranged it
The FDA’s in control
They sign off on these things
But they’re they’re they’re they’re at the same that they’re, they’re trustworthy they’re also not trustworthy depending on what you need for the particular argument at the time
You’re suggesting that they’re untrustworthy
I I would say that the the FDA has given Burzynski every opportunity for decades
Every opportunity
When he didn’t have r r really, he got special treatment as far as I can tell
Uh, the, I’m rather stunned every morning I wake up and don’t see in the paper, that that place has has been closed down
I, I really am
Uh, so, you know, that one doesn’t really fly with me either
Um
Do you know that the FDA pulled out of the prosecution ?
Did you know that the FDA pulled out of the prosecution um of his criminal case, because they were backing a researcher ?
Yeah, the the the it wasn’t the FDA who was pressing charges, it was a Federal prosecutor
Right
And and, they declined to provide information that the prosecution needed
That’s important
That that that’s really important
That he has been given the benefit of the doubt, and he has come up wanting, for decades now
The, no, claims works
He claims works
One of the things I think
One of the things that I think is happening here
One of the things I think is happening here, is that lots of people have worked with Burzynski and then have stopped working with B Burzynski
Uh, you know, uh lots of uh uh uh these partnerships do not seem to work out in the end
I often wonder, if the uh, the way that these things are, are are playing out, because it’s s so reliable that they’re, that these partnerships are going to fail, I I wonder if th they are designed in such a way, that for instance, um a, uh, a a partner would be uncomfortable working
with him
Or um or that the specifications for what it takes to enter one of these trials is so high, that nobody will ever enter the trials
I mean, I wonder if they are, what, especially, like why hasn’t Burzynski left the country ?
That’s what I want to know
Exactly
If he was so, if he was s so persecuted and really cares about getting his treatment out to the world, why wouldn’t he ?
They’re, they’re lots of things going on here
David James has pointed this out, that a lot of questions I’m asking are not going answered
“I still don’t know how long it would take before you would have any doubts about Burzynski”
“I still have no idea, how often we can see patients reporting that signs of getting worse are getting better, before you would change your mind”
I’ve made it very clear that he just needs to have a completed study published and replicated before I support his right to go out and charge people what he’s charging for these, for these drugs, and I’m I’m just not seeing that here with you, and I I wonder what could come from, and don’t worry I will go to your site and I will comment on on on what you’ve run
Um, but, you know, I I I I it’s hard for Skeptics to imagine, what could be gained from engaging with you, if there seems to be no conceivable way, that we can, one, get a straight answer for, how many patients will have to report that getting worse is getting better before you starting doubting your opinion, or, uh, how many uh, uh, how many years does this have to go on before you decide that, “No, we probably just can’t produce the goods”
One of the interesting things about Doubting Thomas that I think you should definitely consider for yourself, is that at some point, when faced with the real opportunity to prove or disprove his assertions, he doubted himself
And that’s important
And that’s where you’re falling short in the analogy
I’ve laid out exactly what it would take for me to turn on a fucking dime
I have, I have made it abundantly clear what I need
Gorski has made it abundantly clear
Everybody else, Guy, and David, and Josephine Jones, uh, the Morgans, all of them have made it abundantly clear, what it would take to change our minds, and you’ve never done that
And even in this, this was an opportunity to do that
To come up with a basis for understanding, where it’s like, you know what, If we can show this, you know, if we can show a this guy, that, that, there, that his standards are not being met, then, you know, we could possibly have some sort of ongoing dialogue after this
Why wasn’t that study
Why wasn’t that , that that that, still . . again, it it doesn’t seem really to to approach the the the, main question here
You know, um . . what are the standards that you have that it isn’t, what are your standards to show that it isn’t efficacious ?
Why was the Mayo
Why was the Mayo study delayed ?
Well you said you had so many years before you finish it and go in
Why, why did it take so long ?
I have something for you, okay ?
Send me that
Could you send me that study the way that it was published because um, just just send me the final study, um, to my e-mail address
Um, because, I can ask that question of those researchers, why was this study in this time, and what happened in-between
Why did it take so long for it, for it to come out
Right
Um, but it it would, perhaps, answer the question; because you’re using it as an example on the basis of which to dismiss criticism, whether or not, uh, it is the standard, and therefor you’re allowed to accept that Burzynski hasn’t published until 2016, or, um, it’s an anomaly, which is also a possibility, that most stuff comes out more quickly
I I, yeah, the other thing that David James points out is, you know, why 2016 when he’s had 36 years already ?
Treating people
You would expect the Burzynski Patient Group to be a lot bigger after 36 years, and in fact is
So, if you’re unsure about this stuff, if you’re unsure about the the time to publication, why are you defending it so hard, other than saying, “I don’t know, I really need to”
Uh about the
The reasons, the reasons for which that he’s, no, why are you defending him so hard, when you’re unsure ?
I’ve backed-up everything that
Every time that I’ve tried
and then other people
Way back
It is about
It is about as efficacious
Yeah, I’ve, and and I based that on a a a that type of thing
You, you, you can read that how you want, right ?
There
He does have the accent though
Right ?
No
Alright ?
No, but listen, like, it it it’s not, it, we we don’t understand why you defend himself so hard, when there is such a paucity of of of information out there
Um
Even if it’s true or false you, honestly though
Even if it’s true or false, in in that particular instance, you know, eh let’s just say that you’re right
Gorski gets that point completely wrong
It has no bearing on whether or not, ANP works
That’s a Red Herring
You’re just focusing on this, on this little niggly stuff, where the real question, is does it work ?
Are patients getting better at a better rate then not
or otherwise ?
We’re were talking about whether or not there’s evidence to suggest it works
The FDA, see that’s the thing
You, the FDA are are, you know, you invest them with, we’re just, we’re just circling around again
Uh um, alright
Well, this has gone on for rather a, longer than I thought it would
Um, I, uh, wanna thank you for coming on here
I wasn’t sure that you would actually do it
Um, I’m glad that you did
I’m glad that we talked
Um, I will look at your web-site, and we will, uh, we, uh, you, oh make sure that I I go to your blog and and I talk there
Um
Please do
And I will look at those
Maybe not in the next few days; I’ve got a lot going on but
Alright
Um
I don’t think he is
I don’t think he’s afraid
I just think he’s got a lot going on
He is act, a full-time surgical oncologist and researcher
He does have insane am, he has to pick and choose his battles
And if, if if he saw that we were going to ultimately be circling around our same arguments again and again; kind of like we’ve done here, um, he uh, you, he doesn’t have time for that, I don’t think
Alright
I I would ask that you to to go back over The The Other Burzynski Patient Group and take their stories seriously, because they deserve at least the same amount of consideration that the survivors do
That’s my
That’s my kids, okay
Well, Thanks for much for talking
I greatly appreciate it
Alright
Take it easy