Stanislaw Burzynski: Kind-hearted strangers and a failure of medical journalism

Journalistsâ coverage of these stories trouble me. I, a colleague at sciblogs.co.nz, and at least one of our readers, wrote letters to the editor in the wake of an article the Jessie Bessant case in New Zealand - neither of our letters were published. My colleague, Siouxsie, told my readers that the journalist did not reply either. Itâs a shame as Iâd like to see journalists, editors and newspapers take more responsibility for what they present and take some care to avoid promoting a dubious (or worse) practice.

Here's one more for your collection, Orac. A five-year-old boy named Phillip Okapa in Staten Island:

http://www.silive.com/news/index.ssf/2012/03/carnival_raises_funds_for_…

The comments section solicits donations.

This same family is also trying to raise funds through indigogo.com:

h_ttp://www.indiegogo.com/phillipokapafoundation?c=home

I've just read another blog on Burzynski that may be of interest. Can any of you US folk who are better acquainted with the ways of the FDA than we Brits are shed any light on what's going on?

http://majikthyse.wordpress.com/2012/04/25/is-the-fda-protecting-burzyn…

Adam,

Just thoughts -

Iâm not familiar with the FDA at all, but I find it unlikely that the FDA is intentionally trying to protect Burzynski in particular - more a case that theyâd be obliged to apply the same rules regardless. They probably have to deny access to what might be proprietary information, but a difference here is how Burzynski is (thought to be) using the system. If the system was being used with good intent, their rules might be reasonable; if the system is being abused, then the otherwise acceptable rules might be hamper examining the abuse - but it wouldnât be intentional. But as I say, just thoughts.

Honest question - given that he's about to face a hearing that may well lose him his license based on the fact that his treatments are unethical/bogus/chose your own adjective, can't he be suspended from practice until the hearing?

@1 I guess all the news of the world journalists had to go somewhere.

There seems to be a real shortage on quality reporting these days, too many journalists thumbing through PR brochures instead of researching.

The quality of journalism does seem to have suffered in recent years. It may be partly a casualty of the decline in print media; the barriers for entry into journalism in the Internet era are very very low, since anybody can publish a blog and call it journalism. It's not good journalism, but it competes with professional journalism and produces a market that is voracious for news, impatient with delay, and unwilling to pay anything more than a passing glance at an ad (and they'll probably complain about that ad too). The temptation to hire inexperienced writers who don't spend much time on the articles is very high, and in some cases will go beyond temptation and into actual need -- they simply can't afford to pay so many journalists a living wage.

I read an article in Smithsonian Magazine this morning. The print issue, not a blog on their website or anything. It was dreadful; the piece meandered this way and that, didn't make a clear point, seemed to contradict its own arguments, and in short, appeared like the sort of thing a high school student might knock off between 2 and 3 AM during an all-nighter. (I know; I produced some crap like that when I was a high school student, pulling all nighters.) Editing it down to a third of its length and then revising it would've improved it greatly, but obviously that didn't happen. Smithsonian has just launched a new format, so it's possible they're having some growing pains as their writers adapt to it. But it seemed an embarrassment for such a major magazine.

There is, indeed, a shortage of quality reporting and also quality writing and editing.

To add to Calli's remarks:

I believe that the general public is truly hungry for information about science and medicine, i.e. issues that affect their lives- conveyed less formally than that which is provided by textbooks and journals: this need is often being met by alt med entrepreneurs who are only-too-willing to provide spurious information about health and life style ( and more recently, economic and political commentary) portraying themselves as 'experts' and 'scientists' who are 'investigative journalists' as well.

Over the last few days I have heard an "expose" of the "fraud" of meds for depression ( Progressive Commentary Hour, Monday), a parody of science ( Natural News, today) and rants galore and tales of miraculous cures by parent-warriors (@ AoA, TMR, every day).

I believe that (from audience response and questions) people are sincerely asking for advice without realising how entirely unrealistic and self-serving their sources are. Money is being made, egos are being plushly padded and folks believe that they are being given an education, rather than 'being taken for a ride'.

I'm a breast cancer survivor and visit the forums at http://community.breastcancer.org/, and it's simply appalling how often quacks like Burznski are discussed there. Of course several very outspoken posters turn up every time to sing the praises of the brave maverick and try to discredit the FDA/Big Pharma/Medical Industrial Complex/Etc.

Denice@8....you're spot on as usual. Taken for a ride, indeed.

That place could sure use a heapin' helping of Orac-style insolence!

@Calli Arcade, #7: The press didn't start getting worse when the Internet become popular. The press started getting worse when news outlets stopped being overt partisan organs and became for-profit businesses. A properly run newspaper could just about break even - it couldn't (and certainly can't these days) deliver any appreciable profit. That's OK for a partisan outlet, because their backers benefit from building a narrative and a community. It's not OK for a commercial venture.

So the newspapers became glossy entertainment magazines.

There is a parallel development on the TV and radio side. TV and radio used to be chiefly a mix of state propaganda outlets and ad-hoc local community groups. Then cable TV happened, and it all became entertainment.

Now, don't take this to mean that the party press was without its faults. But at least under the party press you could keep yourself informed by reading a variety of newspapers and comparing their takes on things. Under the entertainment press, you're better off going directly to the primary sources.

Nor should it be taken to mean that I disapprove of using TV for entertainment. You just shouldn't expect to see any honest newsmanship in an entertainment venue, for the same reason you should not expect to hear sermons at a casino (services of the the first evangelical church of Elvis excepted).

- Jake

Of course several very outspoken posters turn up every time to sing the praises of the brave maverick and try to discredit the FDA/Big Pharma/Medical Industrial Complex/Etc.

You know, it wouldn't surprise me in the least if Burzynski has shills to haunt these forums. It isn't beneath him by any means (see Marc Stephens) and such venues seem ripe to recruit more patients victims.

It would be awesome if there was some way to keep track of all of these stories and follow them to their conclusion, and then have a website that summarizes all of it. So that people could get an idea of just how many of these people are *not* saved by Burzynski's alleged miracle cure.

@dandover: Check out an article called Burzynski's Ghosts on the 21st Floor blog. Several of the people in the movie and the website have died and there isn't a single mention or memorial on the Patient Group website.

Billie Bainbridge's family is STILL begging for money, even though they raised 104% of their goal (they raised 209,000 pounds and were only hoping for 200,000). They want more money for ongoing treatments and future expenses.

Billie, by the way, is now undergoing homeopathic "treatments" as well as hyperbaric oxygen "therapy" and all kinds of other woo.

@ Marc: Some of the comments on that link you provided do mention St. Jude Children's Hospital. At St. Jude Hospital, a child receives treatment for all types of cancer...without regard to their parents medical insurance and/or financial resources.

The NIH Cancer Institute has a listing of all clinical trials being conducted for all childhood cancers, where children are referred by their physicians...or where parents can self-refer their children:

http://www.cancer.gov/cancertopics/types/childhoodcancers

Hello All,

On 11/30/2011 "Majikthyse" who I perceive is from England sent a letter to FDA Good Practical Branch Chief Dr. Constance Lewin a "What the hell is going on with the FDA???" inquiry letter. Being from England he probably has less standing than an American citizen to get (a) response(s) from them but with the FDA's long track history of deflection and obfuscatioin and ducking the issue with bureaucratic dribble (OK let's call it is: Bullshit) and other delay tactics, it really doesn't make much of a difference. Perhaps what does make a difference is as an American citizen in good standing and still alive lest my cancer takes me down which it ultimately probably will, I can submit a FOIA request letter. Here is the first of perhaps many (?) FOIA requests that I hope will bring some clarity to the Burzynski issue; at least who did (not) do what when. Hopefully "Majikthyse" if you see this I hope I've done you proud. Joel S.

http://majikthyse.wordpress.com/2011/11/30/ask-the-fda-to-inspect-burzy…

U.S. Food and Drug Administration (FDA) FOIA Officer Darshini Satchi
U.S. Food and Drug Administration (FDA)
10001 New Hampshire Avenue
HILL-3111
Silver Spring, MD, 20993-0002
Re: Freedom of Information Act Request
Wednesday, April 25, 2012

Dear Darshini Satchi / FDA FOIA Officer

This is a request under the Freedom of Information Act.

I request that a copy of the following document concerning the following subject matter be provided to me:

The notification letter to the Burzynski Research Institute (BRI) Institutional Review Board (IRB) that certifies and/or acknowledges that it has adequately and sufficiently rectified and/or addressed all the criteria and stipulations of the October 5, 2009 FDA Warning Letter composed or written by Dr. Kevin A. Prohaska, Acting Human Subjects Team Lead, Division of Scientific Investigations, Office of Compliance, Center for Drug Evaluation and Research, Food and Drug Administration where he categorically cited the deficiencies of the BRI IRB procedures for the protection of human subjects.

The FDA Reference code for this document is Ref: 10-HFD-45-09-01

Here is the link to the document itself posted to the public at large on the FDA web site:

http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm192711.htm

In order to help to determine my status for purposes of determining the applicability of any fees, you should know that I am an individual seeking information for personal use and not for a commercial use.

I request a waiver of all fees for this request. Disclosure of the requested information to me is in the public interest because it is likely to contribute significantly to public understanding of the operations or activities of the government and is not primarily in my commercial interest. I intend to post the full notification letter verbatim on the Internet as well as any additional commentary, if any, provided with respect to it by the FDA.

I request that the information I seek be provided in electronic format, and I would like to receive it on a personal computer disk or a CD-ROM. If this is not possible a standard paper document will suffice.

I ask that my request receive expedited processing because it will immensely contribute to my ability to evaluate and consider viable cancer treatment options that are the foundation of some of the most important decisions of my life. Furthermore the feedback and opinions from the public will only serve to enhance my study and evaluations thus my compelling reason to disseminate the results of my request to the public at large.

I also include a telephone number at which I can be contacted during the hours of 10AM to 10 PM EST/EDT Monday through Sunday, if necessary, to discuss any aspect of my request.

Thank you for your consideration of this request.

Sincerely,

Joel Shapiro
119 Schilling Lane
Rochester, NY, 14618
Phone numbers in order of preference:
(585) 255-0997 (Cell)
(585) 473-7013
(585) 250-8053

lilady,

I saw those comments--thankfully, there's always someone trying to talk sense into these people. One comment even mentions Burzynski's scam. I don't think the family or anyone close to them is that open minded at this point. It's Houston or nothing for little Phillip.

But the most anger in the comments was not directed at the family raising money for Burzynski's quackery, it was anger that some Jersey Shore star named "Big Ang" (?) appeared at the Phillip Okapa fundraiser. I don't watch the show but apparently she's a bad role model and some people were offended she was at a fundraiser for a child.

The indigogo.com fundraising page is more pure "moochey".

This might be a few months old, but is apropos this conversation. It recounts even more news coverage of families trying to raise money for the Houston scam...

http://skepticalhumanities.com/2011/12/05/more-patients-whose-deaths-bu…

@dandover: the link I just posted at #16 follows up several people who publicly raised funds to go to Houston.

They all died.

http://skepticalhumanities.com/2011/12/05/more-patients-whose-deaths-bu…

Have we met four-year-old Luna Petagine from Oxhey Hall, England yet? Yup, also using the media to raise money for Houston:

http://www.watfordobserver.co.uk/news/9377876.Fundraiser_for_Luna_raise…

I hate ignorant journalists who use phrases like "pioneering treatment" and "answer to their prayers".

Here's a nugget from the Watford Observer last November:

âItâs so important we continue to raise cash for Lunaâs treatment. At the moment she isnât particularly well, sheâs been in Great Ormond Street Hospital having surgery.

âThe shunt, tube in her brain which drains fluid from her head, isnât working properly, itâs blocked, so doctors have had to operate.

âWe think the treatment from Burzynski is working, but it causes the tumour to swell before it breaks down and the swelling is making her poorly.

âDr Burzynski in Texas explained that the tumour had enlarged, but this is due to the tumour breakdown because of the treatment. The problem is there is very little room for more breakdown and swelling.

âWe have made the decision to continue with the treatment from home and hope other medications will control the swelling.â

Here's one more, and then I'll stop posting these. They're easy to find with Google.

Ten-year-old Jaxon Piro needs your money to go to Houston!

http://burzynski.getoutofjob.com/fundraiser-set-for-10-year-old-battlin…

Coincidentally (or maybe not) a relative posted on Facebook today about how Burzynski has had the cure for cancer for 30 years! WITH NO SIDE EFFECTS! And the guvmint is suppressing the data! The FDA

I linked her to this article. I can't thank you enough, Orac, for all your efforts to fight the woo.

"âDr Burzynski in Texas explained that the tumour had enlarged, but this is due to the tumour breakdown because of the treatment."

Right. And if you feel worse, it's because of the toxins being released from the tumor and going through your bloodstream as they're flushed out of the body. And if you don't get better, it's because your immune system was wrecked by previous allopathic treatment. And if you didn't get treatment before, your negative thoughts are interfering with our therapy.

It's easy to cover all the bases.

By the way, did you know that you can invest in Burzynski's lucrative enterprise? Maybe not all that lucrative for you, but you can still get in on the ground floor:

ht_p://blog.anarchic-teapot.net/2011/11/29/should-you-invest-in-burzynski-stock/

@ Che Dama:

I thank you for your very kind words!
I find that breast cancer is a frequent topic amongst the alt med prevaricators I survey: because they capitalise on fear, talking about cancer provides a captive audience who take much of their so-called information seriously. These manipulators weave a tangled web** of half-truths and conspiracy theories that inveigles people who have a serious illness or fear one. The Progressive Radio Network is currently exhibiting its own so-called exposes of: medicine, vaccines and psycho-pharmaceuticals- cancer is next on their hit list!

They offer scurrilous- but profitable- preventive measures as well as advocating useless, time-wasting treatments while frightening worried patients away from SB doctors and treatments. Ramping up fear might cause a patient to delay treatment or needlessly suffer additional fear while following a SB treatment plan. Ironically, these same fellows talk about "compassion" and "altruism".

So what can a person do? Expose, examine, ridicule and challenge these smiling, self-enamoured, loathesome disease-promoters. Since they enjoy being trendy or fashionable, let's show how truly base and un-cool their business is.

** I bow to Sir Walter: 'Oh what a tangled web we weave when first we practise to deceive'.

@ScienceMom ...I'm sure you're right about paid shills. Some of them are really obvious, but the really disturbing ones are those who put on a pretty good act of playing the part of "just one of us breast cancer patients," while consistently sharing the latest cure of the day, revolutionary new product, or secrets our oncologists don't tell us.

"(Isn't our health care system lovely, canceling a woman's insurance because she developed cancer?)"

They didn't cancel her insurance "because she developed cancer", they canceled her insurance because they do not have unlimited money. Your comment on this sounds more like the kind of rhetoric you disliked in another post.

@Denice Walter-we see it every single day there at breastcancer.org. Newly diagnosed breast cancer patients, terrified, overwhelmed, and terrified, find the site and come for support. It's a huge site (100,000+ members), so there's a lot of great info, but also a lot of quacks and their invisible friends who chime in to support them. A recent example is the husband of a newly-diagnosed stage 4 breast cancer patient, a young woman with young children. He's desperate for hope and miracles. Some posters are recommending Dr. Ursula Jacob, Dr. Herzog, IPT, and even baking soda (precisely mixed with raw honey and cinnamon for guaranteed results!). Would be funny if it weren't so tragic.

These woo-meisters scream bully and drive away anyone who dares to question their words. As a legitimate cancer myself, it's devastating to see, but it happens daily there. I wish I could channel the collective skeptic wisdom here and direct it their way. Trying to expose them is like spitting in the wind. They invent more invisible friends and new conspiracy theories and come back quackier than ever.

*** legitimate cancer PATIENT myself *** D'oh!

@5, if TX is like my state, they can only temporarily suspend a license without a hearing when the medical board determines there is an immediate threat to public safety. And while you and I might think this is the case, Dr. Burzynski's case has been kicking around so long, I don't think they could prove there was all the sudden an immediate threat when there wasn't one ten years ago when they started all this with him or in the intervening years. Then the medical board would be providing fodder to Dr. Burzynski for appeal, because that is what he would likely argue.

@ Che Dama:

You might try instead to channel them towards us! or argue yourself-
My own tried and true routine is to outline the symbiotic relationship between whimsy-based theories/ treatments and conspiracy-mongering:
if their ground-breaking theory has not become standard care it must then be because of a grand conspiracy to keep it from the People!
Then I ask: is it easier to believe that there is a many-layered, decades-old conspiracy that involves thousands of people on several continents, implicating medical associations, universities, journals, governments and the mainstream media OR
a single charlatan is trying to pad his wallet and ego?
Which scenario is more likely?
I rest my case.

Che Dama:

There are two general routes you can take to argue against cancer quackery.

The first is, as Denice noted, to point out the absurdity involved in accepting the argument of conspiracy and encourage bystanders to consider the balance of plausibility/probability.

The second is to try to pin the quack-boosters down on what physiological mechanism their amazing cures use. Mainstream oncology can explain the mechanics of most tumours and what standard treatments do, at the cellular/molecular level, to attack them - heck, I'm sure you can find reliable summaries on Wikipedia and elsewhere. So the questions for the woo-meisters can include: what mechanism of action, at the level of cellular physiology, will their treatment use to attack the tumour? How does it distinguish between normal and cancerous cells? What controlled trials can they link to as references showing their proposed treatment works better than placebo or the standard of care?

You don't need a lot of collective skeptical wisdom. Just the right questions.

@Denice, hehe....but they have *real* testimonials!! All the skeptical Big Pharma/FDA meanies here can't compete with that! Ewwww.

Oh believe me, I do steer them here and try to expose their BS, but they use every cliche woo-tactic in the book and really, it's like cutting starfish into pieces. Each piece just regenerates and the infestation increases!

Thanks once again, Orac, for all you do here and in real life(!)

ConspicuousCarl--

I'd be more sympathetic to that argument if they had said "You have a lifetime cap of X for cancer treatment, but we'll still cover your other medical stuff." Canceling a cancer patient's insurance means that if she survives the cancer, she won't be covered for flu shots or high blood pressure medication. It means that here and now, she's not covered for a broken ankle or to have her doctor treat a skin infection or even for painkillers and other palliative care for the cancer.

ConspicuousCarl

Health insurance companies are in the business of providing health care. I don't expect them to have unlimited funds, but they shouldn't be advertising (and taking money) for a service they can't provide.

They didn't cancel her insurance "because she developed cancer", they canceled her insurance because they do not have unlimited money.

And in what way are they different from the hypothetical "government death panel"?

@ Composer99:

Believe it or not, woo-meisters do cite physiological mechanisms that explain disease process as well as how their therapies work. Usually, they do have a tendency to make things up as they go along with much hinging upon *oxidative stress*, *damaged DNA*/ *repairing DNA*: they rely upon the fact that most of their audience has had even less bio and physio than they themselves ever had. Sometimes these valiant efforts to confabulate linkages remind me of the early maps that filled in blank, unknown areas with, 'Here be Dragons' or suchlike.

Listening to a recent broadcast that denied the role of serotonin and NE in depression, the mechanism proposed soon deteriorated into " bad things happen and people feel bad".

@ConspicuousCarl: Insurance companies indeed do not have unlimited money, which is why civilised countries have the government backstop health care provision.

Because the government does have unlimited money.

(The government, of course, does not have unlimited access to medical professionals and facilities. But because it is definitionally solvent, it can ensure that maximum benefit is obtained from those it does have access to.)

- Jake

Re: insurance plans and dropping coverage: Insurance is about shared risk. The 99 healthy people pay for the one who unluckily has a very expensive disease. So most people should be paying a LOT more into insurance than it is reimbursing, precisely so when they get something that no one can afford, it can be properly treated, without having to worry, in general, about what it costs. So I do have a problem with someone getting dropped for having an expensive condition. What I don't have a problem with is insurance companies demanding that providers use evidenced based practices. Insurance companies should deny payment on care that is not evidence based. They should not pay for "futile" care. My uncle just died recently from metastatic prostate cancer. For five years, he went through a series of treatment courses. These were quite expensive, and could be considered "futile" in the eyes of some, because my uncle was never going to beat his cancer. I supported that expense, and would gladly pay higher premiums to support that use, because there is no question that the treatments bought him at least three or four years of good quality life, for which he was extremely grateful. Then the cancer started really taking over. Time for palliation? No. My uncle freaked out and went to MD Anderson, went to Mayo, asked for, and was given every possible therapy despite it being painfully obvious to everyone who was not him or his doctor that it was time to quit. The treatments made him sick and miserable and cost an insane amount of money. The first five years of treatment, he was on a study protocol, the last year he was on the ass-pull protocol. Not once did the insurance say they were not going to pay, and not once did any of his physicians advise strongly against it. They would say something along the lines of "This probably won't help, but it might." then "well there is this other thing that is experimental, and showing some results, probably won't work for you, but....." always stringing him along. I would even be okay if they were getting research out of it, but it was just being justified by compassionate use, not in a study. At that point, for him, and for patients just like him, the insurance company should have said "No. Show us the evidence, or show us that you are even trying to further knowledge on treatment, and not throwing good money after bad." My uncle, a few days before he died, was still grateful for the five years, but really regretted the last year he spent miserable. I think that payors, either third party, or individuals, should demand evidence based, outcomes based care, and if they can't show evidence, they ought not to get paid or they ought to be refunded. This is how to hit Burzynski. The folks who are having fundraisers--fantastic, pay for it, great, but if he can't justify why he is treating a patient a particular way (or, again, even if he were doing real-deal research it would be okay), then he refunds money. No one should have to pay for snake oil. You have to hit him in the pocketbook, hit them in the pocketbook, whether they are Burzynski, MD Anderson, homeopathy, chiropractors, or even your old family doc who is treating URI's with Levaquin, it it don't make sense, they should not be getting dollars.

> I'd be more sympathetic to that argument if they
> had said "You have a lifetime cap of X for cancer
> treatment, but we'll still cover your other
> medical stuff."
> Posted by: Vicki

That's a fine suggestion, but does not change the fact that Orac's remark was inaccurate.

> Health insurance companies are in the business of
> providing health care. I don't expect them to have
> unlimited funds, but they shouldn't be advertising
> (and taking money) for a service they can't provide.
> Posted by: papango

Which insurance company advertised more benefits than they could provide, and what does that have to do with anything here?

> And in what way are they different from the
> hypothetical "government death panel"?
>
> Posted by: machintelligence

It seems a little more blunt to cap a specific amount in total rather than maximums for specific diseases (as someone else suggested), but at the base... IT'S NOT DIFFERENT. That's the entire point. Orac ridicules others for freaking out over "death panels" because money has to be managed somehow, and here he is offering up an intentionally inaccurate description (again, insurance ended because of the total limit, it did not end because she was diagnosed).

Health insurance employee here. There may be a few issues at work with the the woman who had her coverage cancelled. Please note this information is for New Jersey - other states may vary. And, at the start, I'll admit to being confused by the phrase used in the article ..."their temporary health insurance will run out in Mid-May"...

She may have hit a coverage cap - some policies DO have financial caps for lifetime. And once you've hit that cap, you can't get additional coverage. But most coverages (that I have seen) are for $1 million or more.

Since she and her husband are self-employed, I can only think that the "temporary insurance" reference is to a COBRA insurance from a previous employer. But if they are currently covered by insurance, I don't see why - even with her diagnosis of cancer - that they are unable to obtain health insurance, unless the cost of the insurance is prohibitive - which it may be.

Lastly- if they are only looking for insurance to cover the Burzynski treatment, then the companies may be denying coverage based on the investigational status of his treatment. Most insurance companies will not cover procedures that they consider investigational or a clinical trial - since the trials are supposed to pay the member, not the other way around.

Jessica Marie Hehn's link says she owns her own company "Chew"
in Chicago...so I linked to her company's web site, where I found out that Jessica is keeping a journal, about her cancer treatment at the Burzynski Clinic:

http://paper.li/chewlikeme/1308264079

Scroll down on this webpage to see "Caring Bridge/Jessica Marie/Journal and left click to see her entry on April 24, 2012..."Meeting Dr. B"

".....Nothing new happened today at Burzynski. It was a consultation followed by a physical exam, blood work, a urine test, financial counseling and scheduling. Tomorrow I will endure another nerve wracking PET scan. We will discuss the results and initial treatment on Thursday at 10am. What we're really waiting on is the molecular testing to come back from Arizona where the test for over 24,000 genetic markers. From there, I will have a legitimate treatment plan in motion. Sigh. I was hoping today would be different, easier. I was hoping Dr. B would give me some miracle pill and we would just be done with it. I know that's childish thinking, but talking about the "C" word is not fun. It's like reliving being diagnosed all over again. It's rough. Even with my undying faith, it's still hard to talk about....."

Would love to know more about the "financial counseling"...

@43 - from what I've seen at BCO, the "financial counseling" is likely a primer on how to set up blogs, carepages, fundraisers, newspaper mentions, TV interviews, internet forum accounts etc., to drum up support for the quackery. It probably includes some sort of shill-incentive program to lower your outrageously-priced woo treatments.

It probably includes lists of all the critical buzzwords and phrases that must be included in all communications in order to have the most dramatic impact and emotional appeal.

I'm sure it also includes a resource list of all the appropriate media outlets to blast your tragic story (of course always with the disclaimer that, "I'm a private person and never ask for money/help from anyone, but....")!

Che,

You're probably right. There's an eerie similarity to all these public appeals.

I also read on one disgruntled patient's website that all payments have to be up front, well in advance. If you dispute any charges with your credit card company they cut off any further "treatments".

I realize this is only anecdotal, if true, but here's an excerpt of an e-mail Peter Bowditch of Ratbags fame printed late last year:

I just came from the Burzynski clinical treatment. I feel I was defrauded. I was there three months (supposed to be 3 weeks)
I was given chemo. All kinds of drugs, pain killers, valiums etc. When I first called them they said no chemo.
Everyone I saw had chemo. They trained people in the infusion room to use the antineoplastons via ports they had in their body and then sent them home. Most were Europeans. Very few Americans that I saw.

I agree with most all assessments here and then some.

I would like to discuss further what can be done I want to shut this guy down. I befriended several people at the clinic who have told me things that are making my hair curl.
Unbelievable stuff. This needs to get out to the public.

Sorry for the caps the chemo makes it hard to type, read etch along with pills I am current taking.

He charged my credit card over $85,000 and in addition billed my insurance company. To me this is getting paid twice.
I am in dispute with cc company of course but my insurance is still paying claims he filed, several duplicates, wrong dates etc. Lots of misinforation I need to sort thru.

I saw the guy twice, saw my supposed doctor for a total of 18 minutes was given a dr who I found out was not even licensed in Texas to practice medicine.

I was given a prescription for $30000 that I was told I had to buy at the clinics pharmacy, then find out the clinic owns it. The drug was never aproved by FDA for my situation yet they gave it anyway. I was told they give it to everyone no matter what they have by the CFO.

There is so much to tell. I need help putting this all together. I filed police reports, complaints w/med and pharmacy boards in Texas.

I would love to put all the bills online for everyone to see
They refused me further treatment when the found about my dispute with credit card company.

I then went to md Anderson and you wont believe what they told me about Burzynski. I am now back home doing regular chemo and monitored by Anderson in Houston.

Please if anyone can offer some help.

All the evidence I heard and saw suggests the % of help is
only with brain tumors in children.

But you have to remember he uses conventional therapy so you will never know what worked. The bad part in my mind is that he also used on me anyway drugs that had nothing to do with my situation but have horrible potential effects and one therapy he prescriped cost $30,000 for 60 pills alone
I am more than willing to hire an attorney to get this guy out of medicine."

Yes, they're far too consistent in their tone, wording, methods, etc. to be coincidental.

One patient in particular I'm thinking of actually breaks down the charges on her blog in an attempt to "justify" the money people are donating to her cause. She's with Dr. Lodi, not Burzynski, but I think they all go to the same "Better Scam Funding Through Manipulation" training.

Sick and tragic. There aren't too many predators more despicable than these.

This particular patient claims to have no evidence of disease after Lodi's woo treatment for stage 4 breast cancer. Yet in her blog, she mentions chemo, herceptin, xeloda, pet scans, etc! Naaahhhh, couldn't be those conventional methods...must be the coffee enemas or something. It's all so misleading, yet consistent with all the stories.

I imagine that "financial counseling" at Burzynski's clinic means...pulling all your credit cards out of your wallet and finding the credit limits of each of them. The *financial counselor* will then provide the Burzynski-owned pharmacy with credit card numbers, so that "Stan" can overcharge you for traditional chemotherapeutic drugs. Jessica will, of course, max-out on all of her credit cards.

Further down the line, Jessica will be thinking about refinancing her home to pull out equity for "Stan's Treatment". She will not be successful with that remortgaging plan...but then there's always family members whose home equities, she can use to pay off "Stan".

On her "Chew" website and in her journal, she's wondering why she has cancer...she did everything *right* to prevent cancer...including her vegan diet and *right thoughts*.

lil,

OT, but it sounds like how $cientology shakes down their "parishoners" to spend more and more. Their reg guys have credit card companies on speed dial, so they can increase the limits on the cards on behalf of their parishoners. One reg even had a second mortgage arranged for a "church" member so he could buy more training.

The Tampa Bay Times did an entire series on this. One particular reg was taking in half-a-million dollars a week (!) for the cult, using these tricks.

I'm sure Burzynski recommends second mortgages and cashing in retirement plans too.

Insurance companies indeed do not have unlimited money, which is why civilised countries have the government backstop health care provision.

Because the government does have unlimited money.

You might want to qualify that last bit. There does seem to have been a bit of a problem involving countries that no longer have fiat currencies lately.

I apologise for veering off topic but would somebody please explain these so called 'Death Panels'?

Which country has them and how do they work?

@ peebs: "Death Panels" was a comment made by Sarah Palin, Republican Vice Presidential candidate, 2008:

http://latimesblogs.latimes.com/washington/2009/12/palins-death-panel-c…

That whale.to article is horrific. Orac, if you haven't already, could you consider doing a post about that? It's superficially really convincing and I'd like to see its claims contested.

Sorry, wrong thread.

Thanks Lilady.

I should've realised the Spectacularly halfwitted Palin would have something to do with that.

Thanks Lilady.

I should've realised the Spectacularly halfwitted Palin would have something to do with that.

Actually the USA has had death panels active for a long time. The are held in courtrooms and presided over by judges and lawyers. Below is the list of Countries that executed their citzens in 2011:

Afghanistan (2), Bangladesh (5+), Belarus (2), China (2000+), Egypt (1+), Iran (360+), Iraq (68+), Malaysia (1+), North Korea (30+), Palestinian Authority (3), Saudi Arabia (82+), Somalia (6), South Sudan (5), Sudan (7+), Syria (1+), Taiwan (5), UAE (1), USA (43), Vietnam (1+), Yemen (41+)

This list belies the notion that many Americans consider themselves part of the civilised world.

Hello Ms. Kaufman, Messrs. Reed, Weinstein, Levinson et al.: Important addendum to the stonewalling I'm experiencing ...

from the U.S. Department of Health and Human Services (HHS) in my quest to get to the bottom of the ambiguous thus what vigorously contend dangerous oversight of the FDA with respect to the issue of Dr. Stanislaw Burzynski of Houston, Texas.

Dr. Burzynski as of today Friday 05/04/2102 is still able to advertise to the public at large his Antineoplaston as his mainstay treatment yet it is not approved by the FDA.

The FDA sent out a strong warning letter to him/his IRB board he/it did not have sufficient safety protections in place. There is no public document declaring or confirming Dr. Burzynski (IRB) has indeed complied with the warning letter's stipulations and conditions. The FDA/the U.S. government initiated five grand jury indictments against Dr. Burzynski and the National Institute of Health/National Cancer Institute has categorically declared Antineoplastons have not been shown to be effective in the treatment and/or prevention of any cancer or for that matter any other illness/condition yet the U.S. government has given him clearance to conduct Phase III trials.

Finally the Texas Medical Board (TMB) is trying to oust Dr. Burzynski from practicing in the state,revoking his medical license and or his ability to practice there etc. from egregious failings on his part. A court proceeding on the matter was scheduled to commence a couple of weeks ago on Wednesday 04/11/2012 but was postponed without comment by the TMB until further notice.

I have at hand a multitude of references, citations and documentation corroborating everything I just mentioned, but to maintain focus and train of thought I going to defer from profusely posting them in this note; just where they are immediately pertinent and relevant. That said please be assured I can have them available at a moment's notice.

I made a phone inquiry to the TMB and was informed all the facets of the indictments against Dr. Burzynski which can be viewed here:

http://casewatch.org/board/med/burzynski/complaint_2010.shtml

as to why the hearing(s) where postponed but was rebuffed. I will be making a FOIA request to the TMB for the document in much he same respect as the FOIA request I made to the FDA if the Burzynski IRB did indeed satisfactorily meet the criteria and stipulations of Kevin Prohaska; Acting Human Subjects Team Lead, Division of Scientific Investigations, Office of Compliance, Center for Drug Evaluation and Research, Food and Drug Administration in his warning letter to Dr. Bruzynski / the Burzynski IRB.

I vigorously contend this information while perhaps seemingly insignificant is important and essential for me to make determinations if Antineoplastons are indeed a treatment avenue I might be looking to pursue if my current
prostate cancer treatment regime fails i.e. lose its effectiveness. This is especially in light of the ambiguous (dangerous) regulatory environment the FDA permits to exist and ferment.

In exactly the same regard if the TMB postponed its April 11 hearing(s) due to perhaps (?) insufficient evidence or grounds on any or all of the indictments it formally made would be likewise critical information for my own evaluation.

The fact that I'm required to make FOIA/FOIL requests speaks volumes of what should be rightfully immediately available and forthcoming by the agencies supposedly looking out for my health and well being and that of all Americans. It seems so easy to for the government to compose public warning letters and indictments but absolutions, dismissals and even apologies if that be the case or what aspects still need address are essentially shrouded from the public.

This is a terrifying evolution of the U.S. government where literally life saving information as in this case here is so apparently purposely so hard to obtain. I will be spending the rest of my days until I ultimately lose by battle with prostate cancer or some other illness from my weakened state to rectify this hideous injustice promulgated by the Department of Health and Human Services (HHS) and the FDA.

Fortunately, or unfortunately, as the case may be the Internet has a long memory. If in my life I'm unsuccessful making even a dent facilitating a change in this despicable limbo that my said health and human service agencies permit to exist; the least I can do is made a record; a testament of pertinent officials and congress(wo)men I've informed of the issues and situation for posterity.

A couple of weeks ago there were congressional hearings on the General Services Administration (GSA); the United States' landlord scandal where members of the congressional House Infrastructure Subcommittee sought to get to the bottom of the flagrant inappropriate and undoubtedly illegal misuseof taxpayer dollars for extravagant meals, parties and lodgings in Las Vegas in particular and a long history of selecting exotic vacation locations for meetings in general.

Not only were GSA officials grilled by members of the House committee; especially Rep. Jeff Denham (R) of California but the GSA Inspector General Brian Miller as well starting 36 minutes 50 seconds in:

http://www.c-span.org/Events/Hearing-Examines-GSA39s-Management/1073742…

Much of the questioning of Mr. Denham and the other committee members to their disgust, chagrin and outrage centered on establishing time lines; who knew what when and to what extent.

Similar scenes have played out in a long history of subjects in hearings too numerous to name: The SEC oversight of Bernie Madoff, recently the Fast and Furious debacle, AIG, Freddie Mac and Fanny Mae, dating back to Watergate and even before then.

Well, here's will be one man's (my) attempt to make it that there will be no excuse for such ignorance by any pertinent agency official or congressional member in this instance which in my world includes each and every one of them.

For several years before Bernie Madoff's "Mother of All Ponzi Schemes" naturally collapsed under its own weight economist Harry Markopolos tried to warn pertinent SEC officials, governors and members of congress that Madoff's thing was a scam and and a sham of unprecedented magnitude and proportions really to no avail. His warnings replete with really easy to follow evidence to the effect fell on deaf ears.

A movie called "Chasing Madoff" was made on his story. Mr. Markopolos feared for his life because he posed a threat of severe fines, penalties and hard jail time to those complicit with Madoff. While their numbers were of course by no means on the order of Madoff's victims, they certainly numbered many more than a few that had a vested interest to see Markopolos "disappeared".

In my world the regulatory people who oversaw Madoff, the GSA etc. should be held equally accountable. But invariably when agency heads are queried what they knew in congressional hearings they hide behind the cloak of the complexity and enormity of their respective agencies the the distributed oversight responsibility. It's always a nice convenient escape mechanism.

However, in one of the the recent GSA hearings of a few weeks ago former GSA head Martha Johnson was questioned Rep. Denham where he systematically laid out a historical timeline of prior notifications, E-mails and other correspondences where there was absolutely no doubt ... no question whatsoever that not only was Ms. Johnson aware of extreme excesses by those under her watch but the extent of those excesses as as well.

When the GSA scandal broke Ms. Johnson dutifully tendered her resignation and offered profuse apologies but in my world that is insufficient if the people under her are perhaps looking at criminal charges and/or hard jail time. To me she is more than equally complicit in the scandal and if indeed she is not brought up on charges her name should always be associated with her dereliction of her duty; her oath to protect the interests of citizens of the United States.

As I previously mentioned GSA Inspector General Miller was not spared the wrath of hard-line questioning by Rep. Denham essentially being grilled how in his position he permitted Ms. Johnson's poor oversight of the GSA fester to the extent it did. Thus, it was incompetence up the food chain so to speak.

I always perceived the Inspector General with respect the given agency's they oversee to be the independent, unbiased oversight body of last resort. If they're not doing their jobs then really the only entity left is congress to get things straightened out. Unfortunately, without intending to be facetious whatsoever, congress itself has a questionable dubious record in this regard.

From what I see or perceive(d) from my own research all government agencies have their own Inspector General. In the last couple days I found out the FDA does not have any OIG officers explicitly assigned to it; it falls under the general auspices or umbrella of the Department of Health and Human Services (HHS), the HHS Office of Inspector General (OIG) conducts many its own operations as an independent entity onto itself i.e. not associated with the FDA.

Per "Mariel" who I spoke with (who was not forthcoming with me of her last name) of the Chief, Industry Guidance Branch, U.S. Department of Health & Human Services, Office of Inspector General, Room 5527, Cohen Building 330 Independence Ave., S.W. Washington, D.C. 20201, Phone: (202) 619-0335, the HHS OIG does not have a direct oversight capacity of the FDA. It really can only make "suggestions".

What I understand from "Mariel" each OIG has different oversight capabilities and mandates with regard to the respective agencies of which they're associated.

So all I know is I have cancer and there's this doctor down in Houston, Texas who claims to have a cure for cancer or the best treatment there is and I can't make a determination if he's a real duck or a quack from the mixed signals from the FDA and HHS.

From the HHS and/or the FDA I can't get answers to simple questions if Dr. Burzynski sufficiently or adequately complied with a stern warning letter without jumping through FOIA hoops requesting documents that may well exist but without a precise reference ID or name my request can easily be dismissed easily circumventing the spirit and purpose of the FOIA act.

Meanwhile Dr. Burzynski continues to hold out his unapproved Antineoplaston therapy as his mainstay treatment showing not intention of performing Phase III trials of which he blatantly advertises the FDA has given him clearance as a blatant implied endorsement by the FDA on his web page.

Insurance companies won't cover what of his treatment all of which technically should be under the auspices of a Phase III trial at a cost I understand to be around $60,000 (USD) per year. Oh, by the way (BTW) all medications must be purchased through Dr. Burzynski's personal pharmacy of which several are not authorized for treatment by the FDA. medications which is one of the cornerstones in the TMB complaint against him.

Again please refer to:

http://casewatch.org/board/med/burzynski/complaint_2010.shtml

Donations to Dr. Burzynski which he solicits are not tax deductible and fund raising drives for his
treatment abound around the world and here in the United States which is my focus.

With all of this and more I can relate, as of today Wednesday May 2, 2012 Dr. Burzynski still operates in his Houston, Texas facility with impunity apparently with the blessing of the FDA and HHS. From all my research and study I'm more confused than ever seeing that the United States government has taken out patents re: Antineoplastons. Why Dr. Burzynski hasn't sued the U.S. Government with all the resources he can muster from himself and his supporters is yet another inexplicable aspect to this convoluted regulatory mess.

Whatever final result of this Burzynski Antineoplaston saga will be, if he is ultimately vindicated that his Antineoplastons are indeed a viable, valid treatment or if he is deemed to be a fraud and he loses his medical license and the ability to practice medicine; in either respect the loss society suffers both financially and much more importantly its sense of safety that the agencies whose mandate is to protect them has again let them down.

But in this instance the repercussions and consequences are far more severe and substantial than mere loss or misuse of dollars; even billions of them.

As day by day Bernie Madoff was able to extend his Ponzi scheme to an extent that even surprised him under the clueless, totally incompetent SEC, so does Dr. Burzynski operate under the "intense scrutiny" of the FDA and HHS [sic] in stark contrast to their self-serving, self-congratulatory statements and assertions on web pages and videos to the contrary such as respectively FDA Commissioner Dr. Margaret Hamburg who states on her web page:

http://www.fda.gov/AboutFDA/CommissionersPage/default.htm

"Strengthening FDAâs programs and policies will help us protect the safety of the food supply, give the public access to safe and effective medical products, find novel ways to prevent illness and promote health, and be transparent in explaining our decision-making," says Dr. Hamburg. "A strong FDA is an agency that the American public can count on."

Apparently somehow the issue of Dr. Burzynski has either escaped her knowledge at all or that it just this particular doctor down in Houston whose accused of treating folks with unauthorized drugs and a long history of it and flaunting the system just doesn't warrant top consideration and address.

On Dr. Hamburg's Commissioner's web page (of course) she doesn't leave an E-mail address and/or telephone number for her/her office but in an inquiry to the general "contact the FDA help number":

888-463-6332

The FDA representative gave me her E-mail address:

margaret.hamberg@fda.hhs.gov

For sure she will be one of the recipients I'll be explicitly sending this document.

The HHS has a web page of several short videos averaging four minutes of so soliciting and encouraging people to call in with complaints and concerns:

http://oig.hhs.gov/newsroom/video/2011/heat_modules.asp

In one of the vignettes HHS OIG Health Care Fraud Prevention and Enforcement Action Team (HEAT) coordinator Spencer Turnbull of the Inspector General confidently assures us that where if you make a complaint to the OIG and we don't provide updates: "Rest assured we are on the case"

The HHS also boasts of ferreting out transgressions by Forrest Pharmaceuticals and imposing on them a $164 million dollar fine. Here HHS OIG chief Daniel R. Levinson is referenced doing some self-congratulatory chest thumping on bringing Forrest Pharmaceuticals to task:

http://www.cchrint.org/tag/us-department-of-justice/

âTodayâs sentencing of Forest Pharmaceuticals is a victory for the system designed to protect patients from potentially harmful prescription drugs,â said Daniel R. Levinson, Inspector General of the Department of Health & Human Services. âAttempts to circumvent that system by selling misbranded and unapproved drugs simply will not be tolerated.â

I have no doubt that indeed Forrest Pharmaceuticals was indeed guilty but what about Dr. Burzynski, Mr. Levinson?

Mr. Levinson be another to whom I'm explicitly sending this document:
paffairs@oig.hhs.gov
Phone: (202) 619-3148
http://www.hhs.gov/open/contacts/oig.html

And under Mr Levinson: Tony Maida, Deputy Chief Administrative and Civil Remedies Branch, 202-619-2078
Tony.Maida@oig.hhs.gov

This document I intend to be the cornerstone of people and entities I've contacted or attempting to contact about getting some kind of action or resolution on Dr. Burzynski and then clarifications and explanations. This is not a "one and done" but one I intend to be constantly appended of people, names, addresses, phone numbers that perhaps other cancer sufferers may succeed where I fail but also a testament to what has to be an intentional bureaucratic system that permits blatant misconduct while people search for credible information and data that can save their lives.

I also intend to document the hurdles and obstacles specifically put in place to hinder and obfuscate any attempt to bring some semblance of resolution and clarification.

I understand I'm just one guy in Rochester, New York in most likely a futile attempt trying to get some simple clarification(s) from from seasoned bureaucrats in a couple bureaucracies probably bigger than the military that would be instrumental in making some of the most important decisions of my life and maybe thousands of others. But the least I can do is leave a thorough history of where and what I've investigated, who I talked to; the congressmen, bureaucrats well versed in bureaucratic dribble, FOIA request officials versed in deflection and obfuscation in trying to resolve this matter that may be useful to other fellow cancer sufferers and their families..

Perhaps POGO (Project on Government Oversight - http://www.pogo.org) i.e. a non-governmental group watching the watchers might take up my issue. It would be nice but of course I'm not counting on it.

And again if nothing else with respect to the names contact information I've cited in this document and in those I'll be posting subsequent to this, I feel the names themselves are the most important. Not if but when I'm the at sickest times of my life and I'm wondering if Antineoplastons might indeed have been the treatment I was looking for and that my government didn't provide an environment that it could have been researched to it's greatest effectiveness or potential. Or it is a fraud then put an end to it that money can be raised and donated to, and precious resources focused on legit cancer treatments and medicines.

Either way I'll know who to curse to the greatest depths of Hades and perhaps others in my terrible boat who might at least want to know the names as well ... FWIW.

Thank you,

Joel Shapiro

P.S. I never did get contacted. Maybe I somehow missed the voice message but certainly not an E-,mail.

From: "Weinstein, Nick"
To: Joel Shapiro
Sent: Friday, April 27, 2012 2:24 PM
Subject: Casework

Joel,

I have passed your information along to our caseworker in the district. You should hear from someone from our office following up on this matter next week. Please donât hesitate to contact me if I can be of any further assistance.

Regards,

Nicholas Weinstein

Joel Shapiro
Rochester, New York 14618
Phone numbers in order of preference:
(585) 255-0997 (Cell - Call anytime - best to reach me)
(585) 473-7013 (Home - 9:30 to 22:00 EDT/EST)
(585) 250-8053 (Home - 9:30 to 22:00 EDT/EST)

jrs_14618@yahoo.com
-or-
cshapiro@rochester.rr.com

http://enartrans.com

=======================================

Those who know nothing of foreign languages know
nothing of their own.

-Johann Wolfgang von Goethe

=======================================

If you want to correspond with me confidentially here
is my PGP public key block:

-----BEGIN PGP PUBLIC KEY BLOCK-----
Version: PGPfreeware 6.5.8 for non-commercial use

mQENA0Yo00sAAAEIANRilMvuKGEYt8XU1tip4NbL37f0cJwzQATLyp4wFc96ZjxQ
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08omtWiJDmnEiyV0AujvuDsMztscfuFLOwx7BHdUJzMcimXJPtMNxBM0EmARrl/l
a4R/0I+C5BlThXGhN0FC943bCKTsyZlq7RhfPZkenbKIqbPrC8pa2xavgoRFXnSy
rhnkpLKl9ZrIZbPmm7DpgqxnuEfnWFFQcMSESldecoyKdzPsJLBMiwVEIswfypoN
rUh7KSvAnc/A7ppMw+wBsZopUBNOfuTf84vkS/sABRG0GWpycyA8anJzXzE0NjE4
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D/6BhPclV6LXRkQcHNZUoNbsL3a5aFkux/cPrFJ2vCgzxkwHsb/wA38YwjXsTxqA
LkmgyNRHIaqo1nYsBFNGQJMb4JKR0GHUIJoScRHmvSXCIXk/borj8m+rtmEAAhqu
R2iYuMTZ327TFOLuGs+PdPJvC/dNvNcRROaRppaUZzZ8koVCxbqNRb3W2FSo7dc/
ct2VgNI9xW1ZKTHB8jIYTwH1iJJi1ZApHE5rEykE+6765dTRLWTizoff3EU5/CD6
ojTCCqv0Xl6QaZ0tHpl97bE7eC2JsUHpI4yhG/w/jTqHT4lF59KG1ASXKeeiYVR6
f5zV=ny5Q
-----END PGP PUBLIC KEY BLOCK-----

=======================================

I have at hand a multitude of references, citations and documentation corroborating everything I just mentioned, but to maintain focus and train of thought....

Nah, that seems to have left the station some time ago. The PGP bit was a good one, though.

Apparently Luna Petagine's parents have decided to discontinue treatment, and are back in the UK.

She was featured on tonight's episode of Great Ormond Street (BBC 2). The *cough* antineoplaston treatment put her into a Texas. PICU ,with devastatingly high sodium levels and completely depleted potassium. stores. Poor kid came back to the UK looking awful. drooling, urinating constantly, and barely able to. walk.

It. looks like the staff at GOSH hate tHat charlatan as much as we do.

And yet Luna Petagine's fundraising website is still very much online and active; in fact the family received several donations as recently as today.

Now that she's back in the UK her medical care is covered by the public health plan, right?

The family has raised 150,000 pounds, 75% of their goal of 200K. There's no news on the website that treatment in Houston has ended and the "News" section hasn't been updated in three weeks.

http://www.lunapetagine.co.uk/

I wish that well-meaning people with some cash would donate it to a legitimate cancer research organization in their country, or a cancer hospital rather than to families to waste on Burzynski.

BTW, Billie Bainbridge's family is up to 209K pounds (104% over target!) and they're still begging, even though she's also back home in the UK (doing homeopathy and hyperbaric oxygen, among other woo.) So that's 209K+150K=359,000 pounds raised by only two Burzynski families. And there are so many more out there...

@elburto,

Did the BBC show mention what treatment the family is trying now, involving a doctor in Boston?

The reason I ask is that the family posted this message on their Facebook page yesterday, explaining why they still need money. I'm curious who this doctor is in Boston and what the treatment is.

On Tuesday we should hear from Dr's in Boston about the new drugs. Cost, availability ect. Excited and worried they could cost £10000.00 a month which is why fundraising is still so important. Luna has a cold and is chesty right now as are we all. She started some anti biotics today so she should feel better very soon x

Yep, even treatment to rectify damage done in the US is covered by the NHS. Her oncologist was worried, he expressed his fear that if she suffered a bad reaction, to a protocol that's an unknown entity, he wouldn't know how to help her.

And Boston now? Poor kid. She's dying, and instead of her last days being filled with love and fun, she's being used as a guinea pig for sick fucking quacks.

I tried to watch the BBC show but I'm in Canada and the server blocks any non-UK ISPs. I used to use proxy servers to watch forbidden videos but can't be bothered anymore.

I'm very curious about these "Boston" doctors. I'll keep poking around her Facebook and Twitter pages and see if there are any other mentions.

I found this on Luna's "blog"...the doctor in Boston is a Dr. Woolfe and this explains the gene targeted therapy he does. Can someone smarter than me, like a doctor or scientist decipher this GTT? Is it more expensive quackery?

Luna and her family have been talking to Dr's in the US who have agreed that it is unsafe to put her back onto the Anteneoplaston therapy because her tumour is so close to her brain stem and the treatment causes the tumour to swell before it breaks down. They have however asked to put her on a treatment called Gene Targeted Therapy. Basically they take a sample of tumour and in a lab test it's genetics and test which drugs will work. They then give those drugs to Luna. We are very excited to be offered another drug because we knew that the Anteneoplaston's would kill her if we continued on them but we are desperate to cure her. The Gene Targeted Therapy is having great success in adults. We pray it will do the same for Luna. We now need to continue to fundraise so we can start this treatment and carry on with it. Sounds impossible but we can't give up hope. Any fundraising ideas please email us via the web site.

This must be the doctor in Boston. The spelling on the blog was wrong:

http://www.childrenshospital.org/cfapps/research/data_admin/Site2875/ma…

He's certainly legit.

Your nuts! Burzynski is a medical genius, why again does the FDA give deadly and harmful drugs along with radiation witch is also deadly to treat it. Then just to come back later in life? Thats because you used radiation dingbats! You shouldn't use that stuff because it's harmful too Go harass someone elses doctor and leave this man alone. ps any and all bafoons with suits and ties have for over 25 years tried to revoke his license but each and every time they FAILED! big time, so i as always we are very sure these will also fail too justice is on the american people, NOT on the side of you so called "doctors" and sure as hell not on the sides of the money hungry, greedy, yacht sailing clowns over at the FDA and Big Pharma.

@greg

Yawn, the old pharma shill gambit, so boooooring.

Seriously, greg, do you have actual proof that burzynski's treatment actually works, or are you going to have a little temper tantrum like a two year old.

Greg, please go back on your meds. Now just a little factoid for you. Lets take childhood cancer, say Acute lymphoblastic leukemia. There are around 6,000 cases a year in the US, mostly children. 40 years ago the survival rate was zero, zilch, nada.

Due to the influence of evil scientists, and those mad doctors, along with the horrors of radiation and chemotherapy, the survival rate is now 80% for children and 40% for adults. I'd take that as a win.

BTW, Burzynski uses chemotherapy also. So I guess in your eyes he is only half righteous, in mine he is half assed.

@ Greg:

Burzynski does standard chemo, despite his blatant lies otherwise. Radiation, properly administered, does more good than harm... the same cannot be said of Burzynski.

Do you have any actual evidence to refute the conclusion that he's a lying fraudulent quack?

Greg,

I don't know if Dr. Stan has a yacht (he doesn't strike me as the boating type) but he does live in a $6 million, 15-bedroom estate on 10 acres in the richest part of Houston. He has his big ol' initials SRB in wrought-iron on his front gates. Last year his property taxes were $113,000. It's all public and you can get Google Streetview to show you those gates, and the sprawling grounds.

Now who's in it for the money?

Burzynski is a medical genius, why again does the FDA give deadly and harmful drugs along with radiation witch is also deadly to treat it.

That would be because there's a little thing called evidence--something your medical genius has completely failed to provide for antineoplastins--that chemotherapy and radiation therapy actually works, extending survival times and for some cancers (non-Hodgkins lymphoma, testicular cancer, etc.) achieving cures.

I once went out for Hallowe'en as a radiation witch.

(Sorry, it's Friday!)

Im so sick of fda and bs about this doctor being fake. The only reason he is going through all these problems is because of money. FDA and PHARMASUTICAL CO. Make billions of dollats on cancer treatments that dont work so they do not want to lose the billions of dollotd. Its much easier they think to shot down this Polish doctor. Not even US born citizen created a cure for cancer. Of course billion dollor industry would try to stop him sonehow. And the government will not fund it. Its not about savings peoples lives for the Fda, gover, or pharma. Co but about money they make!

@magda

Yawn, can't you trolls come up with anything original besides the old pharma shill gambit.

Here's a clue, magda, present some scientific evidence that burzynski's treatment is effective, or be proven an idiot troll.

Somehow, I think you'll be proven an idiot.

How do you explain the lives that have been saved? Why would Elan and the NCI want the specific ingredients in antineoplastons if they didn't have some interest in studying it further? I just don't understand how you can be so sure that your cult following is right and his cult following is wrong. Chemotherapy agents and radiation cost patients thousands upon thousands of dollars. Raising money for treatment from Burzynski is required because his treaments are not FDA approved and therefore not covered by insurance. Patients pay as much as $5000 a month for conventional cancer therapy even with insurance.
Please help me understand why there is such animosity towards this man. Although it is most certainly biased, the Burzynski movie had a lot of fact based documentation about the FDA and medical board's attack on the doctor.

P.S. When someone doesn't agree with you, that doesn't make them an idiot. Here's your chance to explain, not insult.

Please help me understand why there is such animosity towards this man.

Perhaps you should try actually reading the series of articles that has been posted on the subject.

Ms. Fitzgerald, when a patient agrees to go on an honest clinical trial they are not required to pay for that. If you had actually read the rest of the articles about Burzynski on this blog you would have learned that.

Ms. Fitzgerald, what lives have been saved? Unfortunately, Dr Burzinski hasn't published the results of any of the many Phase II trials he has treated patients under/charged patients to get experimented on.

For starters, please break out patients by stage and type of cancer, how many survived five years after completing Dr Burzinski's treatment, and how many of those five year survivors are still alive today?

Without information like that, we don't know if Dr Burzinski has saved anyone's lives. We have, however, managed to identify a few of his patients who are deceased.

How do you explain the lives that have been saved?

Is there high quality data showing that Dr. Burzynski's treatments perform at least as well as the current standard of care? If there is, where is it? If not, why not? In the absence of that data, how do you know that lives have been saved?

And Jennifer, you must also read the blogs of former patients who have spoken out about the realities of the Burzynski clinic, both medical and financial.

Read about the horrible and sometimes life-threatening side effects from this "non-toxic" treatment. Read about little Luna Petagine, who has doctors furiously working at Great Ormond not on treating her brain cancer, but on reversing the damage done to her in Houston. The high sodium levels require patients to drink many litres (quarts) of water a day, which little kids cannot do.

Read Orac's analysis of the infomercial movie that presents no valid scientific evidence. And Jennifer, several people from the movie and website and dead. One was dying while they were filming him, and the film came out after his death. No mentions, no tributes, no memorials.

Read some of the newspaper interviews I've posted here with the man himself. He's deranged. Would you trust him with a quarter-million dollars and your life?

Read about how not a single other recognized doctor anywhere in the world will support him. Are they all in on the conspiracy?

I can go on and on but it's already been done many, many more times here by smarter people than me.

Jennifer, since you think it's all about money, you should also ask yourself why Burzynski insists that his patients buy their drugs from his pharmacy at enormous markup, instead of getting them elsewhere for substantially less cost.

One of my favourite parts from a 1996 (!) interview Burzynski did with The New York Times:

Most researchers who find a promising treatment publish their results in a prestigious medical journal. Dr. Burzynski said he had submitted a paper to The New England Journal of Medicine, but that it had been rejected. "So to hell with them," he said.

Dr. Burzynski said that as with Einstein and Pasteur, history will prove him right. Cures like his, he said, "have never happened before in medical history, so if The New England Journal of Medicine refuses to publish my paper, why should I waste my time with these fools?"

The F.D.A. has not approved antineoplastons because Dr. Burzynski has never completed clinical trials, controlled tests involving patients taking a new drug intended to prove whether a drug works and is safe.

Madder,

Have you ever seen the photos of Burzynski's $6 million, 15-bedroom house on 10 acres? With his big initials "SRB" on the front gate?

According to tax rolls it's the most expensive house on the block area where he lives. His neighbours' houses are only in the $4 - $5 million range.

And he's worked out a neat little tax swindle where his clinic and research institute don't show any profit year-over-year.

As the alties say, "follow the money"!

@MSII (lovely handle, by the way):

No, I haven't seen them, but I'm not at all surprised. Follow the money indeed.

Sunday May 13, 2012

Dear FDA Representative Ms. Lena Choe: Notification Dr. Burzynski is being indicted by the Texas Medical Board (TMB) ...

Per our conversion of Friday 05/11/12 re: if the FDA can revoke; but the correct term you informed me is "put on clinical hold" drug trial testing by the sponsor of a given clinical experimental drug. In our conversation you alluded that you didn't know if speaking to me was going to accomplish anything.

Au contraire! (On the contrary!)

I figured there were was some kind of FDA infrastructure in place for just this and you referred me right to it:

FDA MAPP (Manual of Policies and Procedures) 6030.1 - FDA Center for Drug Evaluation and Research (CDER)

http://www.fda.gov/downloads/AboutFDA/CentersOffices/CDER/ManualofPolic…

You also informed me that each phase of a drug trial has its own "IND" (Investigational New Drug) i.e. protocols, procedures, framework, "game plan"; whatever you want to call it.

From our conversation what I understand from you if and when the given experimental drug sponsors ever wishes to actually proceed with Phase III drugs is up to them but they can't without approval of the IND from the FDA.

Dr. Stanislaw Burzynski of Houston, Texas is currently under indictment of the Texas Medical Board (TMB) of serious charges of prescribing/dispensing untested, unapproved medications for the given cancer illness causing serious side effects causing undue additional pain and that perhaps hastens unfortunately already impending deaths.

Here are couple verbatim snippets from the TMB's complaint:

b. Respondent prescribed a combination of five immunotherapy agentsâphenyl butyrate, erlotinib, dasatinib, vorinostat, and sorafenibâwhich are not approved by the Food and Drug Administration ("FDA") for the treatment of breast cancer, and which do not meet the FDA's regulations for the use of off-label drugs in breast cancer therapy.

c. In combination with the five immunotherapy agents, Patient A was prescribed capecitabine, a chemotherapy agent. The concurrent prescription of five immunotherapy agents in combination with a chemotherapy agent resulted in Patient A suffering unwarranted side effects.

These I'm sure you'll agree are are serious charges by the Texas Medical Board (TMB).

No, make that as an FDA "ombudsman"; the definition of an "ombudsman" being Noun: An official appointed to investigate individuals' complaints against maladministration, esp. that of public authorities and a liaison to the public [my added definition] you should be meticulously taking comments and/or observations from the public when there is a gross inconsistency of an experimental drug sponsor under your purview and oversight having a long history of purported severe deficiencies in his medical treatment, safeguards for the public safety for his Antineoplaston trials etc. where you (the FDA) had to write a stern warning letter to the Burzynski Institutional Review Board (IRB) the with severe deficiencies not requesting, but demanding remediation and/or address within a given time frame.

To find out if Dr. Burznski (his IRB) indeed adequately, sufficiently complied with the remediation criteria of Dr. Prohaska's warning letter, I've had to go so far as to submit a FOIA act request which is still pending and may be for months.

Here I'm going out on a limb (but not too large a one) surmising Dr. Burzynski (IRB) did not meet the tenets of your (Dr. Prohaska's) warning letter ergo there is no documentation or formal statement by you (the FDA) he complied which begs the question how the FDA gave him clearance to conduct Phase III trials where each trial has its own IND.

I want to emphasize it really is inconsequential if he chooses to conduct Phase III Antineoplaston trials, it is you (the FDA) who gave him the clearance ... the permission, the go-ahead to conduct them.

In our conversation I learned you were not in a position to answer this compelling, disturbing inconsistency; one that should make any American citizen dependent on the FDA for their health and safety who finally realizes the magnitude and enormity of it to lie awake at night wondering how you (the FDA) would permit this to occur, to take place? How did you permit Dr. Burzynski with such a checkered track record to conduct drug trials on humans especially in light of the TMB's charges? Who are these people? What are their names?

You also mentioned the FDA as whole was not in a position to answer such a question or even the existence of an IND! (which I don't buy) thus you were/are not interested or willing to forward my inquiry to anyone within the FDA and/or relay the names of the people involved with the decision to allow Dr. Burzynski's Phase III trials.

But as disturbing to me what I've mentioned so far what really topped everything off; the "coup de grace" was your matter-of-fact, nonchalant admission that the FDA knows of many drug companies, doctors, medical practitioners etc. simply don't listen to you; abide by your (the FDA's) rules/rulings/mandates. People call up all the time with similar inquires as mine; different parts but all in the same ballpark.

Even if I had a regular life expectancy i.e. I had no cancer, other maladies or just if I was younger Ms. Choe you (the FDA) and your fellow "ombuds(wo)men"could bureaucratically stonewall and deflect my inquiries to my bitter end as well as other individuals in my same boat; my unknown counterparts who I'm sure are disturbingly enlightened with as pure an exasperation as there can be.

But if hundreds of thousands; if not millions demand straight answers from the FDA and demand real indications of consistency in its mandate to protect the health and well being of all Americans especially where we are ALL are or are going to be most vulnerable; when we're sick and dying (as of course in the near future sense) I'm confident you'll find there ARE people within the FDA to hold accountable.

Like many other Americans I'm a man of limited financial resources especially in light of my medical issues. Of course I'm not independently wealthy to take out full page ads in the New York Times, Wall Street Journal or even my hometown Rochester Democratic and Chronicle. But what I do have is the Internet and of course the potential for immediate worldwide attention if I can only get past the health "noise" of breastfeeding mothers of children before they trot off to kindergarten.

All I can do is post to my congressman, the head of the FDA, journalists, other cancer sufferers etc. I promise, I swear I will continue to my dying day or as I become too weak to type or worse in such pain I can't keep my thoughts straight. Hook me up to a lie detector or better yet an fMRI I'm not in this for money or 15 minutes of Andy Warhol fame. My life, that of my children and society depends on the FDA and HHS being straight, transparent, consistent and above board to a higher standard than really any other federal agency.

I'm looking to make the best, most informed [sic] choices in the various devil's dilemmas coming my way.

I fully expect a lot of razzing and Internet flaming to what I'm saying here and posting this but if I didn't it would one of my life's biggest regrets.

Ms. Choe, in case your FDA remains ignorant of the TMB's case/charges against Dr. Burzynski i.e. it remains a doodle on your notepad or lost in conversation with your cohorts; other FDA ombuds(wo)men I'ver spoken with ... if that, you can read it here:

http://casewatch.org/board/med/burzynski/complaint_2010.shtml

and formally from the TMB, or rather the Texas State Office of Administrative Hearings (SOAH) itself:

http:/www.soah.state.tx.us

Click the [Electronic Case Files] link in the upper right hand corner. Then select [Use Guest Account] where you'll be immediately forwarded to a search documents page with various fields for search criteria the first on being: Docket Number. Enter: 503-11-1669

A single (found) search result line item should appear for you. Click the extreme left folder. Then, if everything's working correctly, you'll see a long list of official documents, correspondences etc. The original complaint is Document #2 dated: December 13, 2010

I mention this because the Internet is rife with claims the TMB case was dismissed by Dr. Burzynski's supporters or at least the majority of them by none other than himself:

http://www.burzynskimovie.com/index.php?option=com_content&view=article…

There was a scheduled April 11, 2012 hearing that was postponed by the judge that Dr. Burzynski could collect documentation, compose accurate timelines and provide himself a better defense etc. whatever it takes. There is absolutely no indication at least in any of the formal documents any changes or status in any of the charges, lest the majority of them.

I mention this because if you or anyone per chance of all chances within the FDA is researching Dr. Burznski's current status with respect to a potential clinical hold, I don't want anyone in your agency to fall for any false or bogus information.

Lastly, here's a link is my FOIA request for the document stating the Burzynski IRB complied with Dr. Prohaska's warning letter if it exists:

http://dl.dropbox.com/u/58684622/FDA_Burzynski_Warning_Letter_FOIA_Requ…

and here is the acknowledgement the FDA received my FOIA request but no acknowledgment of my claim for deferred charges that it is in the public interest:

http://dl.dropbox.com/u/58684622/Burzynski_IRB_FDA_Warning_Letter_FOIA_…

Here's the FDA link showing to Dr. Prohaska's warning letter. I want to emphasize this is from your agency - the FDA itself notice the date - October 5, 2009:

http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm192711.htm

Here is a U.S. government listing of Dr. Burzynski's Phase III trial - ClinicalTrials.gov Identifier: NCT01260103 - formal title: A Randomized Phase 3 Study of Combination Antineoplaston Therapy [Antineoplastons A10 (Atengenal) and AS2-1 (Astugenal)] vs. Temozolomide in Subjects With Recurrent and / or Progressive Optic Pathway Glioma After Carboplatin or Cisplatin Therapy

http://clinicaltrials.gov/ct2/show/NCT01260103?term=burzynski&rank=61

Notice the date: December 13, 2010

Again, notice the date of the aforementioned TMB's original complaint: December 08, 2010 ... five days before the Phase III listing. Ironic isn't it? These are two compelling references from state and federal governments questioning the welfare and safety of the public with respect to Dr. Burzynski. There are several others let alone from the public. Gee ... what does it take to issue a "clinical hold?"

Now at the end of my letter to you here, there's a final irony - your ever so convenient disclaimer I imagine that's an auto-salutation common to everybody in the FDA including its top bureaucrat,: Commissioner Dr. Margaret Hamberg herself. It's just more ironic coming from you; an FDA ombus(wo)man:

"This communication is consistent with 21CFR10.85(k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of the FDA, and does not bind or otherwise obligate or commit the agency to the views expressed."

I contend I deserve better than this and the American public deserves better than this! But I know it's going to take a lot more people than me to get a straight answer in this particular case that doesn't have the preceding abomination attached to it. Maybe it might be the result of a congressional inquiry, maybe it might be the result of overwhelming public disgust and disdain, maybe it might be the result of a lawsuit, I don't know ...

But what I do know is that with a straight answer without your "little safety net disclaimers (are there other variations?)" to hide behind we're all safer as a result. Really though, if you think about it, I can't get any more unsafe should I or anyone look to Antineoplastons as a cancer treatment or Dr. Burzynski's version of it just between you and me and well, the whole Internet ... can I?

Ms. Choe, I know you're not going to reply to this post but the things I ask you to notice? ... Yeah they're directed to you really in name only; it's really to the Internet world in general and fellow cancer sufferers in particular.

As a final request if you do reply to this note, how about one without the disclaimer. There, Now I guess I'm really not going to get a reply from you am I? But that said I'll always look for one; in a symbolic sense.

Best regards,

Joel Shapiro

From: CDER DRUG INFO
To: 'Joel Shapiro'
Sent: Wednesday, April 18, 2012 3:04 PM
Subject: RE: Dear FDA Representative (Lena): Re: FDA's horrendous oversight re: the Dr. Burzynski issue ...

Dear Mr. Shapiro,

Thank you for contacting the Division of Drug Information, in the FDA's Center for Drug Evaluation and Research.

I apologize for the delay in responding to your inquiry. However, I have tried to contact you and left messages both your home and cell phones to assist with your inquiries.

Please note that clinical trials submitted under an Investigational New Drug (IND) application are reviewed by the FDA. This does not indicate an approval/clearance of the investigational drug that is under development. The purpose for reviewing a clinical trial under an IND is to assure the safety and rights of subjects, and, in Phase 2 and 3, to help assure that the quality of the scientific evaluation of drugs is adequate to permit an evaluation of the drug's effectiveness and safety.

In addition, under the Freedom of Information Act (FOIA), clinical trial information under an IND is considered Confidential Commercial Information and belongs to the sponsor of the product. For more information on the specific Phase III clinical trial by Dr. Stanislaw Burzynski that you mention, we recommend that you contact the sponsor for the study directly. The existence of an IND or other information regarding an IND would not be releasable information by the FDA.

Questions regarding actions of the Texas Medical Board should be directed to the Board.

Best regards,

Lena
Division of Drug Information
Center for Drug Evaluation and Research
Food and Drug Administration

For up-to-date drug information, follow the FDA's Division of Drug Information on Twitter at http://twitter.com/FDA_Drug_Inf

This communication is consistent with 21CFR10.85(k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of the FDA, and does not bind or otherwise obligate or commit the agency to the views expressed.

________________________________

Joel Shapiro
119 Schilling Lane
Rochester, New York 14618

Phone numbers in order of preference:

(585) 255-0997 (Cell - Call anytime - best to reach me)

(585) 473-7013 (Home - 9:30 to 22:00 EDT/EST)
(585) 250-8053 (Home - 9:30 to 22:00 EDT/EST)

jrs_14618@yahoo.com

-or-

cshapiro@rochester.rr.com

Joel,

Can you please tell us, in ONE or TWO sentences, what it is you're expecting the FDA to tell you?

I will not read your typical 10,000 word posting that includes irrelevant dictionary definitions, the history of Bernie Madoff, or anything else beside the answer to my quesiton.

I also suspect no one at the FDA reads your entire missives either. Especially when you send them the same thing over and over again.

Hello Mr. Stephens,

What do I want the FDA to do in one or two sentencesOK FDA, If Dr. Burzynski's enterprise, treatment of patients warranted five grand jury indictments, a warning letter chock full of severe charges he's putting his patients at risk, the Texas Medical board claims he used unappproved drugs on patients that resulted in severe side effects with them, and the FDA explicitly claims there is no evidence that Antineoplastons are a prevention or treatment for cancer or that matter anything else ... how does it permit/authorize Phase III drug trials where per Phase II it has to show some efficacy; let alone everything else?

There! short enough for you?

Joel.