Marc Stephens issues more threats on behalf of the Burzynski Clinic

To provoke the “seriously unhinged” strikes me as inappropriate and unethical. Normally people call the management on the next business morning on these kind of tempests, or do other avenues.

“Calling out” incomplete or scheduled results in a poisoned, competitive, adversarial, proprietary atmosphere with complex legal history is simple grandstanding.

Like you, I hadn’t written anything about Burzynski for years, but now he seems to have made a project of me I will return the compliment.

And Mr Stephens (and everyone else “associated” with Dr Burzynski) still seems reluctant to tell me where Dr Burzynski got his PhD.

or with your public defender who will file a template Motion

Well, that takes care of that.

Thanks Orac, for posting this hilarious follow-up so early in the A.M.

Dr. Burzynski needs to get himself a new press agent…one that will keep him out of the blogosphere…especially important at this time, because of the pending Texas Medical Board hearing that (hopefully) will remove his license.

IMO Marc Stephens is not a lawyer due to his poor command of the English language, his paranoia on behalf of his “client” and his threats.

It is interesting that he uses the British and Canadian legalese “Govern Yourself Accordingly”, which is not used in any U.S. Court that my attorney/husband is familiar with.

It is also interesting that Marc Stephens makes reference to the Wikileaks case, where a real U.K. attorney, Mark Stephens, is defending Wikileaks and its founded Julian Assange. Coincidence…or is this guy “channeling” the real Mark Stephens?

All of these threatening, ranting e-mails should be sent to the Texas Medical Board’s legal counsel, now that Dr. Burzynski refuses to disavow his “representative”.

First, Andy reposted Mr. Stephens’s threats himself. Second,

Link in that bit is too long by half…

But will he insist you cut down the mightiest tree in the forest with a herring?

Hehehehehehe…
Thanks Orac. I was hoping to come home to some more juicy comedy from the MAS and you didn’t dissapoint.

Goats on Fire!!111!!!

Fwiw, Rhys Morgan has reloaded his blog piece on the clinic after getting legal advice AND has written a new post about it all, complete with stupidly condescending emails from our favourite non-lawyer.

Thanks for sharing this!

I wonder if all this bluster doesn’t stem from his “success” at shutting down a UK teenager’s blog. He does seem rather proud of that.

What I find most amusing is his use of “apart” when he is describing someone being a part of a larger group. I’ve worked with several attorneys in the past and they are a stickler for grammar, correct spelling, etc., because it is required for concise communication. I’m not sure if you’re required to take any kind of literacy exam to pass the bar, but if this guy is an attorney he is either not proofing his legal secretary, writing without having his secretary proof him, or just an idiot.

I wouldn’t even consider his correspondence “coherent,” let alone professional. Since he is listed with patient-type services, I wonder if he is a patient’s family member and true-believer who is upset at the possibility that their last grasps at hope might be provide them no guaranteed possibility of recovery?

@Justicar

I remember from when I did a lot of real estate deals that defined terms could end up capitalized regularly (and in a way randomly, because it wouldn’t normally be a word you would capitalize in every sentence) after they were first defined, but I’m not sure about other capitalization conventions.

I suspect that Mark is not an attorney (though who knows – maybe he’s just a really bad one) but that he has seen the occasional real estate contract or court summons and knows that “important” things seem to be randomly capitalized and believes that if he does the same he will look more “lawyerly,” and therefore more threatening than someone who just happens to believe in the clinic and its treatment and wants to defend the “lone, brave researcher fighting skeptical systems.”

Recently I ran into an attorney who complained that the biggest problem going in the US right now is that most people believe they can be their own attorney, much to their later harm. Perhaps this man suffers from that particular delusion, and has extended it to “I can be everyone else’s attorney,” as well?

So his proudest accomplishment is that he cowed a minor into silence? (Google Rhys Morgan – very impressive young man, who already has a couple quack scalps hanging on his spear, but as the images show, he’s 17, and can’t afford to retain a lawyer.)

Charlatans resorting to chicanery and under-handed threats? Say it isn’t so!

Two of my faves:

A physicist writes to a radio station complaining about a woo-meister’s bad medical advice. The station gives the letter to the charlatan’s legal rep who threatens him with a suit *and* invites him to debate on the air- which he does. He writes this all up, along with a de-construction of the poseur’s “education” and “doctorate”.

He gets sued by both the woo-master and the legal rep for a total of 13 million USD and an order to take the “offensive material” off the website! Both suits get thrown out of court. ( @ Quackwatch; Lee Phillips 2/14/2011). Here’s the funny stuff: they tried to claim that Lee was interfering with their business and that Lee’s website ( which earns in the *10s* of dollars a year) was a business itself! The written material- and a synopsis of the legal goings-on- remain.

Todd wrote effectively and sarcastically about HIV/AIDS denialists- which they didn’t at all like- he was then subject to all manner of interference – phone calls, e-mails, to himself, a family member, and his place of employment ( a lab at a university hospital). He gave up his blog under his own name. *But* he has gone on to bigger and better things… still fighting the good fight.

If data doesn’t support your position you need to resort to lies, pr, conspiracy mongering, harassment, and twisting the law to do your will. If providing spurious and sometimes dangerous health information & services for profit and glory is “business-as-usual”, would you *really* expect truth, responsibility, and fairness to rule in other arenas of charlatans’ purveyance?

What do the images prove? All I see are lots of red arrows to the word “skeptic.”

@29: As far as I can tell, he believes that the word “skeptic” proves collusion and conspiracy amongst the people he’s listing. By that standard, Mr. Stephens is connected to every organized crime syndicate in existence, because they all use the word “and”.

Can anyone clarify what the FDA stance in this is? My assumption was that they were uninvolved, merely giving blanket approval for ongoing trials.

However, from the website of the UK family currently the subject of the fundraising campaign comes the following information:
See: “Good news from Texas, 23rd Sept”
http://www.billiebutterflyfund.org/billies-diary/

“The FDA, the US government agency which controls clinical trials, has given approval for her treatment. Also she has an appointment next Tuesday 27 September to have a Hickman Line fitted which is essential for administering her medication.

We were told that FDA approval was likely but some children have been turned down for medical reasons. Phase 2 clinical trials at the Burzynski Clinic have already been completed so Billie had to be given Special Exception. It is a great relief to have this approved and it is one more hurdle crossed”.

This implies that the FDA actively give individual approval for these cases if they are not going to be part of a trial, kind of like a “compassionate grounds” basis?
Is that what has happened?

There is no-one by the name of “Marc Stephens” registered with the Texas State Bar. http://www.texasbar.com/AM/Template.cfm?Section=Find_A_Lawyer&Template=CustomSource/MemberDirectory/Result_form_client.cfm
However, it may be that he’s in California, as it seems his website http://www.burzynskipatientgroup.org/contact-us
appears to have a Californian IP address. There does not appear to be anyone called “Marc Stephens” registered with the Californian State Bar either http://members.calbar.ca.gov/fal/MemberSearch/QuickSearch?FreeText=marc+stephens&x=32&y=16&SoundsLike=false
This may put some of the comments regarding his status in perspective – the Burzynski Patient Group website (linked to above) has someone with this name listed as “Marketing & Sponsorship”.
I think you can draw whichever conclusions you feel appropriate from this.

Orac

To make sure that the leadership of the Burzynski Clinic can’t claim ignorance, I’ve e-mailed them to ask whether Mr. Stephens in any way works for or represents Dr. Burzynski or his clinic or institute.

Rhys Morgan’s post “Threats from The Burzynski Clinic”

Then, on Wednesday, 23rd September – one day before the new deadline was up – I received an email from a law firm called Dozier Internet Law. They informed me they had been hired by the Burzynski Clinic to “investigate and address the issues regarding [my] blog” and respond to my questions in the email sent directly to the Burzynski Clinic.
They’ve not replied within the deadline I gave.

Seems to suggest that Marc Stephens may have some authority or sway within the Burzynski Clinic.
Curious that Burzynski has not otherwise responded to requests for clarification.

IANAL but I’m pretty sure I know a cartooney when I smell one. If by some unfortunate mischance Mr. Stephens actually is a lawyer, he clearly needs to refresh his understanding of barratry law, and GOVERN HIMSELF ACCORDINGLY.

@35. We haven’t accused the patients of being liars, only of being mistaken, and attributing improvements caused by other factors to a false medicine. This has happened before, for example, with bloodletting.

“Calling out” incomplete or scheduled results in a poisoned, competitive, adversarial, proprietary atmosphere with complex legal history is simple grandstanding.

Interesting idea, xyz. Are you therefore claiming that all a quack/crank/fraud has to do in order to keep anyone from calling out the inadequacy of their research is simply to keep that research deliberately incomplete? That would certainly seem to be implied by your statement.

Hypothetical situation for you to answer: a “researcher” has been conducting the same study for over two and a half decades, and even though he’s charging patients six-figure sums to be part of his “study” (contrary to the usual practice where patients are paid to participate) and none of the rumors of amazing cure rates are substantiated by the actual released results… what do you do? Please, do tell us; if “calling out” at any point prior to the researcher announcing themselves done is “mere grandstanding,” please tell us what you would deem the appropriate course to take.

A recurring theme in Marc Stephen’s threats has been along the lines of..

Quoting again from Rhys Morgan’s post:
“You can not interfere with business relationships and contracts.”
and..
“Google was sued and lost because their algorithm created “SCAM”, “FRAUD”, etc next to a business owner’s name. We also filed a complaint with Google and they had to remove the wording.”

Do clinical research trials fall under the jurisdiction of business law?
In legal terms, would conducting a research trial considered as running a business?
Are participants in the trial considered to be customers? Could Burzynski try to take legal action against critics for scaring away his customers?

Shawn:

It is also quite irresponsible, imhowctdo, for doctors to claim the treatment is a complete fraud amongst themselves yet probably do little to understand how he has so many “cured” supporters. If you do believe Dr. Burzynski is just out to steal money from people who have almost no hope left, please have the spine to accuse all of the “cured” of being in on the scam to.

I am not a doctor, but I do have opinions on this subject. I would never do as you suggest and accuse the cured of being in on the scam! As I see it, they are Burzynski’s victims, as he has fleeced them for years. The lucky ones who survived his treatments (and, in some cases, who may have actually benefited — note, however, the anecdotes of patients who later discovered he was giving them normal chemo) were charged far, far more than they should have been. And if this was the clinical trial he pretends it was, they should not have been charged at all; that is completely contrary to the normal practice for an unproven medicine.

So these people who believe they were cured by him are those who were most successfully fooled by him. I consider them among his victims. I would never, ever stoop to blaming the victim, and I am shocked that someone who purports to care about them would suggest anyone else do so.

Bloodletting was practiced for thousands of years with myriads of testimonials as to its efficacy — even though it actually killed a lot of people directly. There are cancer testimonials on the Web touting the benefits of powdered rhino horn. (Yes, that’s the real reason they’re so endangered now; it’s never been a virility thing.) Just because people believe they were cured by a treatment doesn’t mean they’re right. If you care about them, you should care about that too.

Just as I was about to complain that nobody sticking up for the good ‘FDR’s along comes Shawn.

I’m grateful for the link which has completely changed my way of thinking. Six anecdotes and “Open Minded” staff.

My life has been changed on a quantum level.

I also am a proud owner of a standard poodle, and also grew up with them. Lola, my poodle is far more intelligent than Mr Stephens and was a tad insulted by the implied association with her breed! 😉

“sending an pit poodle like Mr. Stephens
Please, sir. Poodles are a fine, noble, and ancient breed. I am a proud owner of one standard poodle* and grew up with poodles. Do not slander this fine breed by association with Mr. Stephens**.”

Shawn @36 complains that doctors ‘claim the treatment is a complete fraud amongst themselves yet probably do little to understand how he has so many “cured” supporters’, and points to a patient group.

This comes after it has been repeatedly noted that Burzynski administers standard chemo as well as his own nostrums — the main difference being his vastly higher charges — so the fact that not all his patients die has indeed been investigated.

Badtim @50 looks into the patient group:

well, the whois for http://www.burzynskipatientgroup.org shows:
[…]
that PO Box also comes up in various other Burzynski related links.

After anon (#44 in the previous thread) called our attention to a “customer testimonial” written in such unctuous terms that you could squeeze enough oil out of it to fill a deep-frying pan, I’m beginning to suspect that the Burzynski empire ploughs a lot of the income stream back into astroturfed support-groups and ghost-written testimonials.

I’m with herr doktor on that. 860+ five star ratings for his propaganda flick on netflix, all reading like Mike Adams’s finest screeds – not a good sign.

I also ran into a few other pages on places like Yahoo Answers, with definite evidence of astroturfing. Somebody has some google alerts set up.

Tell me about it, badtim. We are still swaddled with some bad penny stocks dear hubby got sucked into buying almost thirty years ago. Because of this, he is no longer allowed to play with finances.

oh and congrats orac, the WSJ picked this up.

Link? Nothing is coming up when I search “Burzynski” on the WSJ site. TIA!

Further thoughts on Shawn’s defense of Burzynski:
doctors […] probably do little to understand how he has so many “cured” supporters’

One way how he does it is set up groups like “cancerbusters.com” in the name of a 5-year-old child who was supposedly a supporter, even when the child turned out to have died 6 weeks earlier.
The Millenium Project documents Burzynski’s habit of setting up a shifting mosaic of promotional websites in the names of different clients living or dead:
http://www.ratbags.com/rsoles/comment/cancerbusters.htm

I see that the Boing-Boing website has picked up the Marc Stephens story, so it is “going bacterial” or however the kids like to call it.

Very interesting financials: http://finance.yahoo.com/q/is?s=bzyr.ob

Must have an interesting corporate structure since the publicly-listed entity has zero revenue and a market cap of $42M. So, what payee do patients write on their checks? I suspect an incorporation “tree” with lots of related transactions due to common ownership.

Long before post 34 I was thinking “…people… it is easy to check this idiot Marc Stephens out… I gotta write one of my terribly rare posts. And then Paul Morgan @ post #35 beats me to it. Just can’t win.

Marc Stephens is NOT anything except stupid.

Re. badtim’s inquiries into burzynskipatientgroup.org:
which refers to a PO Box in Pacific Palisades, Ca, which is also the address listed for these guys:
http://www.shopschoolsupplies.com/
that PO Box also comes up in various other Burzynski related links.

Including, Goodness me, a “Burzynski Legal Defense Fund”! Who would ever have thought that he would need donations to his legal expenses!
(the Legal Fund has been soliciting for more money for Burzynski since at least 1996, but I suppose in his line of work it is the sort of thing you establish at the same time as you go into business).

The group has also registered the domain ‘burzynskiscam.burzynskipatientgroup.org’ in the hope that anyone web-searching for dispassionate information about Burzynski’s activities will be directed to them instead.

which refers to a PO Box in Pacific Palisades, Ca, which is also the address listed for these guys

Stephens’s cell phone (562-843-9398) is also tied to a California (Long Beach) switch.

All that is missing from that email of his is the use of many colors and many fonts to make it be the typical loopy rant.

Rhys Morgan’s post “Threats from The Burzynski Clinic”

Then, on Wednesday, 23rd September – one day before the new deadline was up – I received an email from a law firm called Dozier Internet Law.

These guys are pretty amusing just by themselves.

Please be aware that this letter is copyrighted by our law firm, and you are not authorized to republish this in any manner. Use of this letter in a posting, in full or in part, will subject you to further legal causes of action.

I have been trying hard to resist…but..
We all stood up,
and Marc stood up with the twenty seven eight-by-ten colour glossy
pictures, and the judge walked in sat down…with his seeing eye dog… and he
sat down, we sat down. Marc looked at the seeing eye dog, and then at the
twenty seven eight-by-ten colour glossy pictures with circles and arrows
and a paragraph on the back of each one, and looked at the seeing eye dog.
And then at twenty seven eight-by-ten colour glossy pictures with circles
and arrows and a paragraph on the back of each one and Marc began to cry.

[adapted from “Alice’s Restaurant Massacree” by Arlo Guthrie]

Hopefully the threatened people are forwarding these e-mails to the Texas State Bar. I’m not a Texas lawyer and don’t have any particular knowledge about the rules of discipline in Texas (though most of them are fairly consistent across state lines). Regardless of whether or not he is actually a lawyer, there are usually rules against lying to third parties and threatening a third party with civil/criminal charges in order to coerce them in a private matter. If any of the people he threatened are represented by counsel, he also may have broken rules against communicating with opposite parties represented by counsel.

* Disclaimer: I am not licensed to practice law in the state of Texas and don’t know anything about the Texas rules of discipline, other than reading them after a google search. The above is not legal advice and should not be taken as such.

@ Andy: He didn’t actually claim to be a lawyer…he stated he “represents” Burzynski.

@ badtim: The people who were listed as patients provided “testimonials” about their regression/cure from cancer, so it is not a violation of the HIPPA patient privacy law.

BTW, the Wikipedia website on Stanislaw Burzynski, now has picked up on the Andy Lewis and Rhys Morgan harassment by Marc Stephens under a new header “Burzynski Clinic’s threat to online critics”

How convenient that the following probation terms don’t appear to apply to Marc Stephens and the Burzynski Patient Group.

“Limits Placed on Burzynski’s Cancer Treatment”
[Texas Attorney General’s Office News Release, February 10, 1998]

Under the agreement, Burzynski and BRI agree to abide by probation terms he was placed under by the Texas State Board of Medical Examiners. Specifically, the agreement stipulates that Burzynski:

*Cannot distribute unapproved drugs in Texas
*Can distribute “antineoplastons” only to patients enrolled in FDA approved clinical trials, unless or until FDA approves his drugs for sale
*Cannot advertise “antineoplastons” for the treatment of cancer
*Must place a disclaimer to his website, promotional material and ads stating that the safety and effectiveness of “antineoplastons” have not been established
[emphasis added]

Scource: Quackwatch 04ConsumerEducation/News

If Marc is a lawyer, he is free to post his BAR license. I can’t find him on the bar website for CA or TX. Otherwise, he needs to STFU.

lilady,

He doesn’t claim to be a lawyer, but he won’t deny it either. He postures as if he were one creating FUD (Fear, Uncertainty and Doubt) in the minds of his readers as to how much reality there is behind his threats. It’s like the guys shaking down the corner store. They never issue direct threats, but say things like “it would be a real shame if anything were to happen to this nice little store…”

My research makes me think that Mr. Stephens is in SoCal and is in real estate.

I also posted on Rhys’ blog, but “Dozier Internet Law” sparked a memory.

Ah, and herr doktor bimler picked up on it too 😀

At least those guys (somehow) are actual lawyers. And this response to one of their cease and desist notices is good: http://www.citizen.org/documents/directbuyresponse.pdf

Whether he has a Ph.D. is an interesting question. Wikipedia’s cite on his education is a link to an interview/promotional piece (it links to his website and has pictures of children and such). He dismisses the claim that he doesn’t really have a research degree as a politically motivated lie, but doesn’t state what his Ph.D.-equivalent research was about.

It seems plausible that someone would have left Poland in 1970 because he didn’t want to join the Communist Party. I have no idea of whether that would have led to a post-Solidarnosc university administration lying about that expatriate’s credentials. A statement of at least the title or subject of his doctoral thesis, even if he can’t point to an online version, would have supported his claim. (If he’s reading this thread, he can of course provide the information in a comment, but I have no particular reason to expect that he’ll see this question.)

This is far better than watching TV. Hubby and I are pulled up to the computer with slippers and popcorn. What we are wondering re Chris’ link @54:

Why would Dr. Burz need Mr. Stephens to represent him, when a member of his board of directors is described thusly:

Michael H. Driscoll, J.D. was a Judge and served as the County Attorney of Harris County, Texas from 1981 to 1997. Mr. Driscoll has been a Director of Burzynski Research Institute Inc. since 1984.

Why would Dr. Burz need Mr. Stephens to represent him …

I suspect it may be because an actual lawyer is bound by law and by professional ethics, and can’t get away with the out-and-out bullying that Mssrs. Yapper, Blowhard and Flapjaw can.

That is very interesting, Jenn. When I check PubMed I see a “Burzynski B” as an author, often with “Burzynski SR.” Who is that?

I’m amazed that Marc Stephens is dumb enough to try and insinuate he is a lawyer, when information to disprove that is readily available on the internet.

The other thing that surprises me is the veiled threats he’s making, among them including Google Maps screenshots of Ryhs Morgan’s home in his communications with him. Marc Stephens doesn’t seem to be a very smart fellow by doing all this, it appears his ego is writing a check he can’t cash.

One last thought for Marc Stephens to consider, a quote from Robert E. Howard (creator of the Conan the Barbarian series of books). “Civilized men are more discourteous than savages because they know they can be impolite without having their skulls split, as a general thing.”

To translate that into simple terms since Marc Stephens doesn’t seem to be very bright: his words and actions can have real world consequences. Whether it’s being brought up on criminal charges, being sued in civil court, or simply getting a punch in the face – sooner or later he and the people at the Burzynski Clinic are going to bite off more than they can chew with the wrong person. Just a matter of time.

Ah – 50 years and billions upon billions spent for research that has produced no substantial conclusion – and we call Burzynski ‘dubious’?

Ah – 50 years and billions upon billions spent for research that has produced no substantial conclusion – and we call Burzynski ‘dubious’?

“We”? That characterization was measured by any stretch of the imagination.

lilady #68

Herr Doktor Bimler: I tried twice to get on the Boing-Boing site and within a few seconds my computer froze.

Representative from Burzynski Clinic sends aggressive legal threats to skeptics who question “antineoplaston” cancer therapy

xyz:

The ultimate constraint on antineoplasteons or Burzynski is through competition with documented, highly effective treatments at reasonable prices, not so much by sanctions, through a demand for effective treatments AND well documented results.

Prove it. Show us the peer reviewed papers of those who have independently replicated Burzynski’s methods. Or, just show us the results of the clinical trials he has charged families hundreds of thousands of dollars in the last three years. Just post the title, journal (only high impact journals, please), and dates (none before 2009, please) that Burzynski has honestly tabulated the resutls of his “clinical trials.”

evilDoug @93

I would have expected Burzinski would have engaged the services of Dewey, Cheatam and Howe.

The commentary on Boing Boing about Burzinski/Stephens is by Cory Doktorow, so this thing is definitely developing legs outside of the skeptosphere.

Chris@104
Prove what? I didn’t say anything about whether antineoplasteons worked.- I meant overpowering competition by successful conventional treatments with a good track records. People usually buy “outside” if they are desperate because they have a hopeless treatment prognosis or no options. No need exists with a good, solid conventional treatment. Then a poser’s potential market shrivels to unsustainable.

The ultimate constraint on antineoplasteons or Burzynski is through competition with documented, highly effective treatments at reasonable prices

Oh, great, Adam Smith and his invisible schlong Silver will save the day.

The ultimate constraint on antineoplasteons or Burzynski is through competition with documented, highly effective treatments at reasonable prices

So we can agree that there is a problem with a purveyor of a chemotherapy regime that is undocumented, ineffective, and is provided at 10 times the purchase price of the drugs, who is at least in contact with Marc Stephens and who has unquestionably engaged the services of a team of writ-hurling legal bottom-feeders like Dozier Internet Lawyers?

The vitriol (and poor grammar) sounds exactly like the writings of AIDS Denialist Clark Baker. A New York Supreme Court Judge just eviscerated Mr. Baker for an affidavit he submitted on behalf of Celia Farber’s ludicrous defamation suit against a well known and well respected AIDS Activist. In the judgement, the judge said that Mr. Baker had no credibility to discuss the matter and none of his comments were pertinent in the least. A normal person would have been embarrassed, but I’m sure Mr. Baker is not capable of actual human emotion.

@Matthew Cline

In Illinois, if one holds oneself out as an attorney, directly or indirectly, without holding an Illinois license to practice law, one is guilty of contempt of court. 705 ILCS 205/1. The fine is pretty small, but actual damages are also available in addition to the fine. The ISBA is pretty good at going after the unauthorized practice of law in Illinois. However, if someone is threatened into doing something by someone falsely claiming to be an attorney based on their mistaken belief that that person is an attorney, fraud and perhaps even intentional infliction of emotional distress civil claims, among others, might be available as well. The laws vary thoughout the states,and I am not an expert of Texas law.

Given that legitimate drug and treatment trials don’t ordinarily cost money to the participants (much less the hundreds of thousands of dollars that is being charged here), I don’t think you have a leg to stand on XYZ.

@ xyz: Well the two cases that are cited in the pending Texas Medical Board complaint (Patient A and Patient B) along with the specifics of the complaint appear in my comment at # 100 above.

Have you researched all the drugs that Dr. Burzynski prescribed to Patient A and Patient B? I have. None of them are approved by the FDA as treatment for the Patient A’s cancer (breast cancer mets to brain, lung and liver) or approved for “off-label” use by the FDA for metastatic breast cancer. The one cancer drug prescribed for Patient B’s esthsioneuroblastoma is not approved by the FDA for treatment of this type of cancer or for “off-label” use for this type of cancer.

The Texas Medical Board also questions why Burzynski withheld information about the progression of the disease and the non disclosure to the patient about the drug he prescribed lack of efficacy for her cancer…in spite of three MRIs that confirmed the spread of her cancer.

There is nothing in the complaint about the costs charged to the patients when purchased through the pharmacy the Burzynski owned-vs-an independent pharmacy, but the Texas Medical Board has raised the ethical question of why Burzynski did not disclose his ownership of the pharmacy to the patients. So, I guess you are calling “demonization of Burzynski” by the Texas Medical Board, eh?

xyz:

I’ve got my own reservations about Burzynski and personality. However I have doubts that his treatment prices are “10x,” as #113 said, or even 1.1-2x those at 1515 Holcombe.

Except that in a clinical trial, the correct price to the patient for the drugs is ordinarily $0. So even if indeed these high prices are normal, it is not customary to charge patients for the privilege of being guinea pigs. (This, incidentally, is the real reason insurers do not pay for experimental treatments — not merely because it’s uproven, but also because the experimenter is supposed to be the one paying.) Charging them gives the false impression that the drug is not experimental, and also creates a serious conflict of interest, especially if the drug is being provided by the experimenter — they have a vested interest in continuing the treatment even if it is not effective, because they are getting paid to do so.

The office costs cited are also ridiculous, quite honestly, and he requires large non-refundable deposits paid up-front. That’s very peculiar even for an FDA-approved medication. For an experimental medication, it’s a serious red flag. To me, a non-medical person, it makes me think he expects patients to flee (or perish) and wants to make sure he gets some money out of them first. If he doesn’t have enough confidence to let his patients pay on a more normal schedule, what confidence should I have?

The FDA seems to have found some merit in his glioma treatments since the 90s. Burzynski’s latest unproven methods with biomarker personalization seem to be current science based if not proven.

Some of them might be science based. Some of the ones highlighted in this thread are clearly not, using drugs for which there is no indication nor evidence that they would be useful for this particular cancer. That worries me. What worries me more is that he does not appear to be honest with his patients. There are clear instances of failing to be honest about his patients’ actual diseases and disease progress; there are clear instances of failing to even inform the patient of what drugs were being prescribed, never mind explaining that they were being used off-label. That’s not right.

Antaeus Feldspar@43

Call me Ishmael. With TMB or FDA as Ahab, I don’t think the regulatory part has worked too well for anyone. The real Mocha Dick had a 100 harpoons stuck in him before rendered. The Burzynski affair is muddied by the flaws in all parties…

You know, I asked you a fairly specific question, and it seems like you’re avoiding answering it.  Do you think there should be a loophole whereby a delusional crank or an outright fraud should be able to keep themselves from ever facing justly deserved criticism, simply by always declaring their research to be “incomplete”?

The ultimate constraint on antineoplasteons or Burzynski is through competition with documented, highly effective treatments at reasonable prices, not so much by sanctions, through a demand for effective treatments AND well documented results.

Ah, I see.  So you wouldn’t say that you favor the protection of the revenue streams of all “researchers” over the protection of patients; rather, you believe that protection of patients is already accomplished through the free market.  The problem, though, is that even those things that everyone agrees the free market does well, it can be prevented from doing well by, oh, say, preventing consumers/patients from getting full information about their choices.  Which happens to be one of the effects that would come from adopting your principle that no one can say anything about the business being operated by anyone calling themselves a “researcher” so long as they call their research “incomplete.”

Antaeus Feldspar reponds to xyz:
the free market […] can be prevented from doing well by, oh, say, preventing consumers/patients from getting full information about their choices.

So what does it say about someone whose legal representative is a company specialising in suppressing full information about choices by closing down websites which report negative consumer feedback?

I’ve noticed that the examples given on the wiki page for Streisand Effect have yet to be updated.

Also Marc Stephens has done a great service in diverting attention to Burzynski’s scam and I think he deserves some sort of award. Suggestions?

I think [Marc Stephens] deserves some sort of award.

Lots of e-mail. Complete with Google Map images showing where he lives, in case he’s forgotten.

So after the Faux Noise reaction to the police chemical attack in Oakland, “It’s a condiment, basically” entered the language pretty quick. Anybody got an in at Urban Dictionary or Quickmeme that could get “GOVERN YOURSELF ACCORDINGLY!”—with proper attribution of course—before the requisite millions of eyeballs?

herr doktor bimmler

So what does it say about someone whose legal representative is a company specialising in suppressing full information about choices by closing down websites which report negative consumer feedback?

You obviously do not understand libertarian principles. Dozier Internet Lawyers is protecting the right of corporations to sell overpriced crap without criticism. This must trump any free speech by ungrateful consumers. Remember for libertarians The Wealth of Nations and other writings by Adam Smith are like the bible for Christian fundamentalists – you are supposed to worship it, not read it.

Sauceress @75

Sorry about the delay (I live in a completely different time zone)

My tablet survived the spray of Shaky Bridge pinot noir. Thank the FSM I wasn’t using my laptop!

even worse – people have been cured by this burzynski person – of cancer! oh no!

“Is to type the friggin nine letters with consistent capitalization beyond your mental capacity?”

That’s a rhetorical question, of course, given its demonstrated mental capacity.

Dope-smoking troll has a new name. Forgive him if he gets it wrong.

Also Marc Stephens has done a great service in diverting attention to Burzynski’s scam and I think he deserves some sort of award. Suggestions?

A Hitler parody?

One might think that Marc Stephens had learned a lesson. Well – one has to think again then. He has just started harassing cancer patients again: http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/#comment-850

Stephens has definitely not learned his lesson and continues to attempt to engage in a battle of wits with Ken at http://www.popehat.com He is losing badly but being the self centered arrogant A that he is, he is unable to admit to it.