I thought I'd be leaving the topic of Dr. Stanislaw Burzysnki and his combination of Personalized Cancer Therapy for Dummies-level "personalized, gene-targeted cancer therapy" coupled with his "cancer-curing" antineoplastons, which have morphed into an orphan HDAC inhibitor used off-label as part of his pricey everything-but-the-kitchen-sink" combination of targeted therapies and old-fashioned chemotherapy. After all I figured that there would probably be nothing new to say before sometime in January, when he is schedule to appear before the Texas Medical Board to answer for his dubious medicine again, the first time since the 1990s.
Then I saw this story from the U.K.:
The family of a five-year-old girl with a rare form of brain cancer are hoping to raise £130,000 to send her to a US clinic which could be the only chance of saving her life.
Chiane Cloete's family in Enfield want her to be treated at the Burzynski Clinic in Texas after she was diagnosed with a highly aggressive form of cancer.
The clinic's course of treatment, which aims to "switch on" the genes responsible for cancer suppression, is not available in Britain. Her father, Chris, a company director, stepped aside from his role this year to help her mother Andia look after their girl. The couple also have a two-year-old son Estian.
She is being treated at Great Ormond Street Hospital where an MRI scan next Thursday will see whether the cancer is spreading and if she is fit to fly.
Mr Cloete said the discovery of the cancer meant the family's "whole world was turned upside down in a matter of seconds", adding: "She is like any normal child. We are just a normal family, looking after her is so intense and takes up so much time. She is so brave for her age and a fighter. I have no doubt we will get the funds needed. The snowball effect is starting to take an effect."
Oh, no. Not again. A year and a half ago, I called this sort of thing harnessing the generosity of kind-hearted strangers to pay for woo. More recently, as in last month, there was the famous case of Billie Bainbridge, a similar sort of child in similarly dire straits, whose family managed to attract the attention of U.K. performer Peter Kay, who did two charity concerts to raise £200,000 in order to send Billie to the Burzynski Clinic for his dubious and incompetent ministrations. Chiane's family is taking a similar approach in that they've set up a website (Help Me Fight Cancer) that advertises fundraising events, Chiane's Diary, and, of course, the appeal for funding for the Burzynski Clinic:
I need your Help to fight my Brain Cancer"
We desperately need to raise £130,000 for Chiane. We have to take Chiane to the Burzynski clinic in Texas (USA) for Innovative and pioneered cutting-edge Personalised Gene Targeted Cancer Therapy that is customised specifically for her.
__
The £130,000.00 covers her treatment costs ONLY. We did not include any costs or expenditure such as traveling, accommodation etc. to the States.
__
For more information please visit www.burzynskiclinic.com
As Elton John and Bernie Taupin would say, I've seen that movie, too. Whenever I start getting too cynical about human nature, I think of all the people who are more than happy to throw money at children like Billie and Chiane, children whom they don't know, and I get a warm, fuzzy feeling inside; that is, until I think about the purpose for which the money is being raised, namely to pay for an overpriced, incompetently designed, unproven therapy that is incredibly unlikely to benefit the child. It's horrible to contemplate the death of a child due to a disease as horrible as the brain cancers causing these children's suffering, just as it's profoundly saddening to consider the pain their families endure as they become more and more ill, deteriorate, and ultimately die. Who wouldn't want to do anything in his or her power to try to help these girls to live to a ripe old age? I understand. Really, I do.
But I do not condone. And neither did the skeptical blogosophere, which reacted to the Billie Bainbridge story with strong criticism of the British newspaper The Observer, which published an incredibly credulous article in which almost never was heard a discouraging word about Dr. Burzynski and his claims were barely questioned, and then only as as an afterthought. Then, in response to criticism, the editors of the paper doubled down on the stupid. In this, the original article about Chiane Cleote in the Evening Standard matches The Observer for utter cluelessness. The ironic thing is that it was the reaction to criticism of Burzynski in the skeptical blogosphere by a flack of the Burzynski Clinic, Marc Stephens, who is not a lawyer but nonetheless threatened bloggers in the name of the Burzynski Clinic as though he were its lawyer, that brought the attention of the larger skeptical community (and, I must admit, of myself) upon Dr. Burzynski. Worse, even though the Burzynski Clinic disavowed Stephens, it didn't disavow legal threats to silence bloggers. Before that, Burzynski had been mostly flying under the radar. After that, hundreds of blog posts were written, and I started looking into aspects of Burzynski's activities that I had not seen discussed before and did my best to publicize them.
What Dr. Burzynski is selling is hope, but it's a false hope that glimmers no more brightly than the hope offered by conventional therapies. Certainly he's never been able to demonstrate that his results are any better than any other cancer center, and, as has been pointed out, patients he promotes as being success stories very frequently turn out, when someone follows up on them later, to be nothing of the sort. Often they turn out to be dead of their cancers.
Dr. Burzynski's stock in trade, as far as evidence goes, is anecdotes and case series without control groups subject to major confounders and selection bias, all wrapped in a patina of science-y sounding gobbledygook designed to mimic what real oncologists and real science do. He keeps numerous clinical trials open to allow him to administer his antineoplastons but never seems to be able to progress to phase III trials or to publish his clinical trial in halfway respectable journals. Unfortunately, although Dr. Burzynski is a good mimic and very talented at portraying the "brave maverick doctor," he's not so good at actually doing oncology. As I have shown before, he uses the results of a commercial test that does nothing better that what a lot of other cancer centers do and produces recommendations that are facile and whose applicability to the tumor being tested ranges from the painfully obvious without the test to the highly questionable to come up with cocktails of chemotherapy and targeted therapies without regard to potential interactions. Then, of course, he throws antineoplastons--excuse me, phenylbutyrate--into the mix. The result is a gmish of up to six or seven drugs thrown together without consideration of potential drug interactions, the likelihood of which rises markedly with each new drug added to the cocktail. Worse, Dr. Burzynski tells the press and his patients that he is not giving chemotherapy when, in fact, he gives lots and lots of chemotherapy in a non-evidence-based manner, along with huge doses of antineoplastons, either given as antineoplastons many grams at a time or as phenylbutyrate, which is an HDAC inhibitor and thus chemotherapy.
If the Cloete family sees this blog, I sincerely hope they will read these posts by me, which expound upon all the points listed above:
- Burzynski The Movie: Is Stanislaw Burzynski a pioneering cancer researcher or a quack?
- When "personalized gene-targeted cancer therapy" really means "making it up as you go along"
- What Dr. Stanislaw Burzynski doesn't want you to know about antineoplastons
It is not my intention or desire to crush the hope of such families. It is, however, my intention to put Dr. Burzynski's claims in context for them, so that they understand what they are getting into and that Dr. Burzynski is not a savior. He isn't even a good doctor, in my opinion, and he's certainly not a good scientist. Parents need to realize that in reality their children are no more likely to survive due to Dr. Burzynski's ministrations than they are if they just stick with their current oncologists. It might sound cruel to say so, but I would argue that it's far more cruel to hold out false hope at a price of hundreds of thousands of dollars. It's the very epitome of "misinformed consent," in which they are given a far more optimistic assessment than reality would warrant. Worse, if they spend the money, they'll squander the short time they have left with their children subjecting them to Dr. Burzynski's cocktails. In the end they'll still have a dead child, but if they save the money and focus on good palliative care they can at least maximize their quality time remaining with their children. More importantly, the child will suffer less.
There's another aspect about Dr. Burzynski that is disturbing. I had been thinking along these lines, although not as starkly, but wondered whether I should bring up the issue. Then Ministry of Truth published a post, Burzynski - Conscience and Complicity. In it, he argues that, as bad as we feel for the parents of these children, it helps no one if we in essence "give them a pass" for their promotion of Dr. Burzynski's medical misadventures. First, he notes something that's painfully obvious to anyone who's looked at Dr. Burzynski's history over the last three decades:
For as much as I understand and accept the validity of the reasons given for taking a softly, softly approach with Burzynski's patients and their families, the problem I have with it is it that it too readily fails to illuminate what is one of the most, if the most, despicable facets of the Burzynski Clinic's business model.
By preying on people who are genuinely in a desperate situation and charging them huge sums of money to join one of the never-ending series of so-called clinical trials, the overwhelming majority of which fail to report any kind of results, Burzynski not only scalps these people for tens, and even hundreds of thousands of pounds/dollars but, in some (many?) case he also compels them to serve as his accomplices and even, when the critics begin to circle, as his own human shields.
This strikes me as the most despicable aspect of the Burzynski business model. Over the years, he has encouraged, if not outright built up, a cult of personality around himself, in which he is portrayed as the one doctor who can cure incurable cancers but, for all his efforts, is rejected and "persecuted" by the medical establishment when all he is trying to do is good. Any criticism directed against him inevitably results in patients and families coming out of the woodwork to extoll the virtues of this "brave maverick doctor" and proclaim him as the man who is saving their lives or the lives of their loved ones. It's a strategy that, at times, has worked brilliantly, as demonstrated in the numerous scenes of patients in the incompetently produced propaganda piece Burzynski The Movie castigating lawmakers, the FDA, and the Texas Medical Board for going after Burzynski, telling heart-wrenching stories and proclaiming that they will die if Burzynski is shut down. It's an incredibly potent P.R. weapon, and one that Burzynski is not in the least bit shy about using, as you can see in this video:
Notice at the end how the video announcer says of the Texas Medical Board proceedings that "this 'trial' is going to happen unless we the people stop it from happening." It's a direct appeal to popularity, as though popularity should have anything to do with whether or not the law is enforced. The video then finishes with a dire warning that, if the Texas Medical Board has its way, this will happen to Dr. Burzynski:
- Medical license revoked
- Closure of the clinic
- All patients abandoned
- No likely chance of FDA-approval of antineoplastons
Of course, no patient will be "abandoned," but that's how it's portrayed. I can only admire the "restraint" of the video director for not portraying the Texas Medical Board as baby-eating cannibals who want to eat children with brain cancer. I suppose that's restraint compared to anti-vaccinationists, anyway.
The video concludes by asking, "What are you going to do about it?"
I know what I'm going to do about it. I'm going to follow the story of Dr. Burzynski as his case finds its way to the Texas Medical Board early next year, and I'm going to blog about it, applying skepticism and science to his claims and those of his followers. As surgical oncologist and cancer researcher, to me the failure to shut Burzynski down decades ago points to the utter inadequacy of some aspects of our drug regulatory process and, of course, our state medical boards. While I sincerely hope that this time it will be different and Burzynski's clinic will finally be shut down, I fear it won't.
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The reason his treatment is so expensive is because he is not getting ANY financial support from the government like Pharma is getting. Gee, do I want to take the risk of ingesting insecticide chemo therapy and radiation to combat cancer, or try something else? Just for the fact that he has any type of success rate is good enough to try it.
@cathy
First of all, got any actual facts in your little screed? Where are his results? He has had 30 years to show results, and has not shown one damn thing.
All he has done is show propaganda movies and websites to support his "viewpoint", none of which are scientific an any way, as well as harassing those who question his "methods".
And is there any reason why burzynski should be charging exorbitant fees for his "clinical tests" when in all other clinical tests, there are no fees or charges? Can you explain why burzynski charges exorbitant fees for his patients to get rugs at his own pharmacy, drugs that would be a lot cheaper elsewhere?
Are you really sure you want to support someone so ethically challenged, cathy?
No Cathy, the reason his "treatment" is so expensive is because Stan is a greedy, unscrupulous megalomaniac quack bastard who rips people off and lives in a $6 million, 15-bedroom house.
He has NO success rte, unless you have some proof. And please don't mention that piece of crap informercial.
It's been debunked many times by real scientists. And several of his "star" patients are dead. Three died in the last few weeks, yet they're still on Stan's website.
Why don't you post on some more recent threads about Stan? Orac has written tons about him here, including some posts from a couple of weeks ago. Hint: he's hated here by most of us.
Do you work for him? How much is he paying you to post positive comments?
1. You do realize there are sources of research money beyond the government, right? You also realize that there are other governments out there, right?
2. Burzynski uses chemo drugs off-label. He makes patients pay an inflated price for them.
3. How can we know his success rate if he doesn't publish his research? Testimonials are inherently cherry-picked anecdotes. Anecdotal evidence isn't something you make a conclusion with. If someone's trying to sell something based off of testimonials, it should give you pause.
4. Allowing Burzynski to continue his "research" through the con artist methods he's been employing sets dangerous precedents for pharmaceutical companies to do the same. If Burzynski can use unproven treatments for so long without publishing his results to the medical journals, what's to stop the pharmaceutical companies from doing the same?
5. I detect hints of "nothing to lose" in your post. That's a line quacks use to hook desperate, dying patients on an alleged miracle cure: Instead of tending to their final affairs and leaving something behind for their loved ones, their time and resources are spent on a quack who won't get any blame for failing. At least with known treatments, doctors know about the chances of success and failure. With Burzynski, there's nothing like that because he's been avoiding publishing any results for decades.
Cathy, you should listen to what the critics are actually saying, not what you've been told that we're saying.
MSII:
Oh, sure he has a success rate. Zero percent is a rate, after all. Mind you, I doubt anyone, Burzynski included, actually knows what his success rate really is.
How can you choose, unless you can first determine if that 'something else' even works and what risks are associated with it?
Burzynski, although he's been charging people to take part in so-called clinical trials for decades, hasn't published any results demonstrating his treatment works. Instead he's conducted a marketing campaign based on cherry picked personal accounts of former patients (many of whom who, although their personal testimonies remain part of his marketing campaign, are in fact deceased) to drive personal income.
If antineoplastins don't work, and Burzynski knows they don't work but continues charge desperate people exorbitant sums for treatment that won't help them, he's quite simply a monster.
And if the opposite is true--if antineoplastins do work and he knows they work, but doesn't publish his results allowing the treatment to adopted by mainstream medicine and made available to everyone who might benefit at manageable cost--he's simply a different kind of a monster
Given the number of cancer trials out there - working on much more "real" treatments and fronted by legitimate medical research establishments, it pains me to see families spend hundreds of thousands of dollars on something that hasn't proven to work, despite over thirty years of effort.
This is flat-out fraud in the guise of "medical empathy."
As phenylbutyrate seems to be available in the UK (http://www.patient.co.uk/medicine/Sodium-phenylbutyrate.htm), I'm sure they can find a local "maverick" to prescribe it for them.
The hired legal gun Richard A. Jaffe, Esq. for Burzynski, discusses one of the charges (16.00 minutes into the video), that Burzynski owned the clinic pharmacy, where patients purchased chemotherapy drugs, and provided us with the deposition of the # 1 patient's husband.
Regarding that disposition, Mr. Jaffe blackened out huge sections...but missed this section:
"I was not prepared for the usury price that was charged to my credit card that day. The process would be repeated on multiple occasions during our visits to the clinic. Each time the drugs were provided by the clinic's pharmacy and each time my credit card was charged, because the drugs issued were not approved by my health insurance."
Not-so-slick lawyer has provided us with an important piece of the deposition, which heretofore we were unaware of. Could it get any better?
I hope that the attention that the Burzynski Clinic has called upon itself from skeptics will hasten the end of it.
Whether or not the Burzynski "therapy" is more effective than the current standard treatments for cancer - or more effective than placebo, for that matter - the fact that he continues to call phenylbutyrate "antineoplastons" shows how ethically bankrupt he is.
If he were honest, he would drop the magical-sounding (and inaccurate) "antineoplastons" tradename and admit that he's using off-the-shelf pharmaceuticals.
This child could receive the same regimen at home for far less, even if the NHS refused to pay for the medications. All of the components are available in the UK and, as I mentioned in a previous comment, the wholesale cost of phenylbutyrate is about $12 a gram.
It is beyond ludicrous that this family should even be asked to fly out to Texas just to get an unproven cocktail of readily available drugs. If Burzynski truly cared more about patients than profits, he'd work with a physician in England to get his "therapy" to this poor child.
Remind me again - isn't one of the standard "alt-med" claims that "mainstream" (i.e. "real") medicine is driven solely by profits? Clearly, they need to attend to their own practitioners - who make far less than Burzynski for treating cancer patients - before addressing the profit motive in real medicine.
Of course, there is no reason to think that Burzynski's "antineoplaston therapy" - or whatever he chooses to call it - will work any better than tap water or powdered unicorn horn for this poor girl's cancer. The only guaranteed result is that £ 130,000 (~$200,000) will be siphoned from well-meaning donors into the coffers of Burzynski, Inc.
Prometheus
Rhys Morgan got a good write-up in The Guardian yesterday.
What an incredibly disturbing article and video. My heart goes out to the cancer victims and families who have been swindled and deceived by Burzynski's falsehoods. One has to wonder whether Burzynski is delusional, or truly as callous as he seems.
Chiane's family is taking a similar approach in that they've set up a website (Help Me Fight Cancer) that advertises fundraising events, Chiane's Diary, and, of course, the appeal for funding for the Burzynski Clinic:
More precisely, the Burzynski company sets up the "Help Me Fight Cancer" website and fund-raising appeal from a template, inserting Chiane's name in the appropriate places.
What is worse is that the child would be taken away from Great Ormond Street Hospital (one of the most famous and well thought of childrenâs hospitals in the world) to then be treated by some quack at America for a ridiculous price.
"More precisely, the Burzynski company sets up the "Help Me Fight Cancer" website and fund-raising appeal from a template, inserting Chiane's name in the appropriate places."
Burzynski's prospective patients and current patients also make on-line pleas for support of their treatments at the "Setting Them Free.org" website:
Our Mission:
To help Cancer Patients and their families afford critical but uninsured medical expenses by providing a personal web page and fundraising education and assistance
Setting Them Free is a 501(c)(3) charitable organization and provides both tax-deductibility and fiscal accountability.
Setting Them Free creates free Web profiles on behalf of un-insured cancer patients and for fundraising and treatment awareness.
The individual "free Web profiles" detail how much money Burzynski's patients have already invested leaving them destitute...and the costs associated with beginning and maintaining treatment costs at the Burzynski Clinic.
What a compassionate caring doctor this man is...by providing "free Web Profiles"
I hope you caught Popehat's dismembering of Mark Stephens. It was really spectacular.
http://www.popehat.com/2011/12/06/junk-science-and-marketeers-and-legal…
http://www.popehat.com/2011/12/07/tell-me-about-the-rabbit-marc-stephen…
Here in the States, in the meantime, we commonly see charity pleas so that cancer patients can go try some treatment in Europe that is not FDA approved.
This has to be a case of the grass is always greener.
Whenever I hear of such things, my first take is that it is the same thing - European quack instead of American Quack. There is probably a reason why said therapy isn't approved for use by the FDA.
I resist my temptation to go look up the details of the claimed therapy and writing a letter to the paper editor with information for those folks who are considering donating. But when its a small town newspaper, you run the risk of pissing off people who will take it out on your family and friends, so I hold my tongue. I don't know if that's right, though.
Marry Me, Mindy,
I'm sure you're right.
I shudder to think how many times I have seen appeals in the UK for money to send cancer (and other) patients to the US for "cutting edge" treatment. It had never occurred to me until recently that many of these appeals might have been to send people to quacks like Burzynski. I had always assumed it was a reputable hospital they were being sent to.
I know I have often read claims that X (ozone, vitamin C, flaxseed oil or whatever) is used widely by doctors in Europe, yet despite living in Europe I had never heard of it being used anywhere except perhaps Mexico.
What an incredibly disturbing article and video. My heart goes out to the cancer victims and families who have been swindled and deceived by Burzynski's falsehoods. One has to wonder whether Burzynski is delusional, or truly as callous as he seems.
Grace
If a pediatric cancer patient in the United States or in foreign countries needs cancer treatment and is uninsured or under-insured, St. Jude Children's Hospital, Memphis, Tennessee provides cutting edge care. Parents do not have to run fundraisers or benefits for their child. From the St. Jude Children's Hospital website:
Patients
About 5,900 active patients are seen at St. Jude yearly, most of whom are treated on a continuing outpatient basis as part of ongoing research programs. The hospital also has 78 beds for patients requiring hospitalization during treatment. St. Jude has treated children from all 50 states and from around the world.
Patients at St. Jude are referred by a physician, and nearly all have a disease currently under study and are eligible for a research protocol. St. Jude is the only pediatric cancer research center where families never pay for treatment not covered by insurance. No child is ever denied treatment because of the familyâs inability to pay.
At St. Jude, kids are treated by real pediatric oncologists...not by doctors such as Burzynski and his colleagues at his clinic...who are not cancer specialists, have no board certifications in cancer care and who have no hospital affiliations.
Interesting how those who are attempting to expose Burzynski and other quacks are accused of "crushing the hopes" of people with cancer.
The whistleblowers and investigators who brought down Bernie Madoff didn't encounter this at all, AFAIK. Madoff's victims had hopes, too. Some were hoping to get rich, others were simply hoping for some security and comfort in their old age. When all those hopes were crushed by the revelation that it was a Ponzi scheme, the blame went straight to where it was deserved, to Madoff himself.
I hope that the Texas Medical Board can reveal the truth about Burzynski, and maybe some of the anger will be directed to where it is deserved.
Illady - they aren't doing fundraisors because they don't have insurance but because their insurance won't cover non-FDA approved treatment in Europe. Usually involving stem cells.
Kinda OT: This season there was an episode of Hawaii 5-0 that featured an investigation into illegal animal smuggling which ended with a pancreatic cancer patient trying to kill a "traditional chinese medicine" doctor who had sworn the (illegal animal) magic pills were curing the patient. When the patient's oncologist told him he wasn't getting better, he attacked the fake doctor. (Weapon against the quack? Chemo IV.)
It seemed like an an unusual direction for a very mainstream show to take.
@ Marry Me, Mindy: Most children (90 % or more) who are diagnosed with cancer each year in the USA are treated in COG (Children's Oncology Group)-sanctioned clinical trials. From the COG website:
About Us
The Childrenâs Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the worldâs largest organization devoted exclusively to childhood and adolescent cancer research. The COG unites more than 7,500 experts in childhood cancer at more than 200 leading childrenâs hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer.
Today, more than 90% of 13,500 children and adolescents diagnosed with cancer each year in the United States are cared for at Childrenâs Oncology Group member institutions. COGâs unparalleled collaborative efforts provide the information and support needed to answer important clinical questions in the fight against cancer.
The Childrenâs Oncology Group has nearly 100 active clinical trials open at any given time. These trials include front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these diseases, and trials involving new and emerging treatments, supportive care, and survivorship.
The Childrenâs Oncology Group research has turned childrenâs cancer from a virtually incurable disease 50 years ago to one with a combined 5-year survival rate of 80% today. Our goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer.
It is virtually impossible to have a child diagnosed with cancer, who does not enter a "clinical trial" in the USA.
I know, that parents when faced with a diagnosis of cancer, will try anything to save their child. But, it still does not make sense to donate to a fundraiser to pay for treatment of a child in Europe...or at the Burzynski Clinic in Houston...for treatments that are not part of clinical trials.
lilady @14: The difference is when you go to St. Jude, the doctors tell you that they are testing a therapy, and it may not work. This is called "informed consent," I believe.
Burzynski, it seems, tells you how to set up your own web site to raise money for his fees. But I don't know what he says as part of the informed consent for his clinical trials - are there any reports available?
Health freedom advocates trumpet brave mavericks (like Dr B and AJW) decrying how the government or medical associations would like to shut them down, interfering with their rights while denying people the right to choose cutting edge medical care. It's rank oppression taking advantage of the in-equality of power between the state, institutions, and the individual. Or so they tell us.
However I'm concerned about another inequality: people do not all have the same level of understanding about medical procedures and complicated diseases like cancer in this age of information and technology. Years ago many people unquestionably complied with medical advice but now the language of the left ( of which I am a moderate member) has been co-opted by alt med proselytisers who use it creatively and un-remittingly to sell their own message and bill of goods. It appears to me that another right is being trampled upon here: the right to truth in advertising and unbiased presentation of data. Freedom to lie, misinform, manipulate, and obfuscate shouldn't be a right but a punishable offense.
People who are not sophisticated about medicine and science can be misled: unfortunately many who mis-represent health information are able to go about blithely spreading myth and nonsense for profit. Interestingly it is "freedom" in the form of law like DSHEA that interferes with people's rights as it enables mis-representation, with the less educated being the most vulnerable. "Power to people" indeed!
The next time a woo-meister tells you that your rights are beng abridged, you should ask, " By *whom*?"
@ ken: I've never had to sign an "informed consent" form for cancer treatment. I have signed "informed consent" for numerous procedures for my son, such as heart catheterization and many, many lumbar punctures...which are relatively simple and necessary procedures, to diagnose/provide treatments for his symptoms.
My husband has recently undergone left and right atrial cardiac ablations and placement of drug-eluding cardiac stents...for which there were multiple consultations/explanations with interventional cardiologists beforehand and quite lengthy "informed consent" forms.
"But I don't know what he says as part of the informed consent for his clinical trials - are there any reports available?"
I think we will have to wait for the Texas Medical Board's proceedings to see if the "spirit" of "informed consent" was followed.
Brain Fog Alert: drug eluting stents...not drug-eluding stents.
The lawyer who is defending Bruzynski for this latest charge lodged against him by the Texas Medical Board claims that Burzynski only administered drugs purchased through the Burzynski-owned pharmacy...in order to "protect the patient"...not because Burzynski overcharged patients for chemotherapy drugs.
I am not convinced that this is the reason for patients purchasing chemotherapy drugs exclusively through Burzynski's pharmacy.
When my son was frequently hospitalized in a number of large university-affiliated teaching hospitals, I always provided certain anti-convulsant medications for him (Dilantin Infatabs rather than Kapseals and Mysoline 50mg tabs), which were not available at the hospitals' pharmacies and were purchased at my local pharmacy. These hospitals always "accepted" these medications...that were dispensed from a registered, non-hospital-affiliated pharmacy.
I presume that hospitals in Texas would administer drugs provided by the patient that were not on hospital formulary lists and that were prescribed by a physician, "filled" at a pharmacy and provided in the original dispensing vial.
St. Jude saved my brother's life from Hodgkin's disease. Our family could NEVER have afforded treatment for him, but St. Jude enrolled my bro in a clinical trial so that treatment was free, and they paid for our lodging in Memphis, too!
Now that's how it's done! Quacks, take notice.
Interestingly, Dr Burzynski filed a patent for a method for making phenylbutyrate in 2001:
Patent record
(4-henylbutyric acid is just another name for phenybutyrate). So maybe he's just making the stuff in-house (or somewhere else) and flogging it from his own pharmacy...
Furthermore, it looks like in some cases he's using phenylacetate/phenylacetylglutamate for IV treatment, rather than PB:
http://supatrascancerfight.blogspot.com/2011/11/24-nov-11.html - let's not forget that AS2-1 and AS-10 are just PA/PAG. PA is a disgustingly stinky drug - you wouldn't be able to use it orally, but you can use it IV, and it costs pennies.
@Melissa G - fantastic news about your brother. Cancer care in the US is such a thorny issue because of the money/insurance issues, and it's great to know that places like St Jude's are there to help.
@lilady "Drug-eluding stents" LOL :)
I am so dammed angry... I've been to the Cloete family's fundraising website and read some of the messages left on the messsage. Messages like this one:
I want to punch the screen - better still, punch the face of that vile creature who is preying on the kindness of strangers.
On the good side, somebody's posted a message telling them about St Jude's Hospital. Maybe more people should do that.
TBruce: "Interesting how those who are attempting to expose Burzynski and other quacks are accused of "crushing the hopes" of people with cancer.
The whistleblowers and investigators who brought down Bernie Madoff didn't encounter this at all, AFAIK. Madoff's victims had hopes, too. Some were hoping to get rich, others were simply hoping for some security and comfort in their old age. When all those hopes were crushed by the revelation that it was a Ponzi scheme, the blame went straight to where it was deserved, to Madoff himself.
I hope that the Texas Medical Board can reveal the truth about Burzynski, and maybe some of the anger will be directed to where it is deserved."
I don't recall hearing about this with Madoff, but it's not unusual in cases of financial scams for victims to blame regulators, believing the scamsters' argument that if they'd only been left alone they would have realized all those promised riches for their marks, er, clients.
Sadly, the people who fall hardest for the promises of "alternative" practitioners like Burzynski are the same ones who pride themselves on not being sheeple taken in by Big Pharma and the Government/Medical Establishment.
It's one of the founding principles of woo - the more you believe in conspiracies, the easier you are to fool by those who warn of conspiracies.
Speaking of folly, the following discussion of self-treating cancer is loaded with classic examples (a Burzynski supporter chimes in on page 15):
ht_p://www.amazon.com/forum/health/ref=cm_cd_pg_pg1?_encoding=UTF8&cdForum=Fx1…
@ Melissa G. It is wonderful news that your brother was treated at St. Jude Hospital...it is one of my favorite charities and a number of friends did donate to this worthy cause in remembrance of my son.
@ sophia 8: I hereby give you permission to "rip off" any of my comments about St. Jude Children's Hospital or the COG (Children's Oncology Group) clinical trials group for posting on any website.
@ K: Glad you had a laugh at my expense...I made the same mistake on a post at the SBM blog and "got away with it". I'm blaming Spell Check for the error!
Actually a better example would be the recently exposed fraud / ponzi scheme in the Amish community. People lost hundreds of thousands of dollars, but were very reluctant, if not entirely against, pursuing the individual responsible.
These types of situations, especially within tight-knit groups or under extreme stress, can do funny things to people's reactions.
I donate to St Jude every year. It's a good institution and a good cause. They strive to minimize the financial burden, and do amazing things for families who have little money.
I will never donate money that I know is going to Burzynski. He does nothing to ease the burden beyond suggesting hitting up friends and family for donations.
@ sophia8:
Although Dr B is truly the most loathsome example, inveigling money from folks strapped by harsh economic times is common enough amongst alt med providers. You might think I'm exaggerating but these prevaricators actually use the recession as a selling point! Here's how it's done:
First, they ramp up fear about possible frightening scenarios that might happen: banks collapse, public services decline, riots and gangs become commonplace, food shortages occur. You can no longer rely upon the safety nets society has provided so you must become self-sufficient: they sell videos and books telling you how to become "sustainable" and "off the grid". Then health issues are highlighted: you can't trust doctors and the "pharma-industrial-complex" so you should take your health care into your own hands. And they have the supplements and food products available at their stores at their websites. You wouldn't want to be weak and ill in a time of economic and political unrest where the medical community is suspect now, would you? ( NaturalNews; ProgressiveRadioNetwork)
Surprisingly people spent *more* money on supplements during the darkest days of the Great Recession (2008-2009) according to a CNBC report ( US; UK spent slightly less). Supplements sold by woo-ful websites are not the cut-rate simple vitamins and minerals sold at chain stores but highly targetted "solutions" and "preventive" measures that address serious illnesses like cancer, heart disease, and degenerative conditions associated with aging- not supported by data of course, but presented as such- and sold at a premium.
I'm even-tempered but nonsense like this makes me want to scream.
TBruce, Dangerous Bacon & Lawrence
There was a similar Ponzi scheme that started in a Mennonite town (Linden) in Central Alberta and spread to a Mormon town (Cardston) in Southern Alberta. I heard an interview with an RCMP fraud sqaud officer and an insurance agent from Linden. The Mountie said that he was not getting much cooperation from the victims. Many of them believe that the perpetrator (who had disappeared) was in the US trying to recover the missing money. The insurance agent said that he tried to warn people about the scam and had lost a lot of friends as a result. There is a strong sunk costs fallacy effect at work. It is very hard for victims of a fraud to admit they were gullible, so they construct all sorts of rationalizations. The effect is going to be even stronger when people have taken donations for a medical fraud. In addition to admitting gullibility, they have to face that they participated in defrauding others. What is surprising is that any of Bullshitzkis have spoke out.
The last sentence of my comment should have been
What is surprising is that any of Bullshitzki's victims have spoken out.
That reminds me, Orac: Has the Houston Troll whose posts look suspiciously like Marc "quit asking me if I'm an attorney" Stephens' statements ever returned?
This reminds me of a similar case over here, in Poland - only this time it was a 23-year-old victim of pancreatic cancer who needed money to undergo "vitamin B17" (amygdalin) treatment in Mexico. And even the mainstream media (which really should know better) had all those appeals for help, which pissed me off to no end.
Isn't vitamin B17 also the infamous "laetrile?" It's active ingredient is arsenic, I think... derived from apricot pits. There are actually outlets which will sell you crushed apricot pits to eat if you can't afford the "purified" version.
I was watching "A Gifted Man" last night, and the main character had to tell a pregnant patient that they found a brain tumor and had to treat it quickly. Her baby wasn't very far along and he recommended immediate delivery. When asked if the baby would be safe, he began to list possible complications to be very honest with her, and she stormed out of the room immediately.
It was probably a fairly realistic portrayal of what happens in the face of medical honesty. Any risk becomes an imagined reality, and benefit vs. risk isn't even considered rationally. Doctors do their best to be honest with patients for the patient's best interest; the charlatans with their cures are either deluded enough to really believe it can work in all cases (except when a patient is non-compliant or "too much allopathic medicine has already been given") or they honestly just like the money and couldn't care less about the patient.
I often wonder what it feels like to move from an alternative perspective to reality - is there an "a ha" moment, or just a slow process of having belief after belief knocked down? Or are those who are truly alternative incapable of ever moving to a more rational world view?
I'm with Denise at #21 about "freedom of speech."
Here's how to "take out" Melanies Marvellous Measels.
Create a website that sells "the whole series" with a bunch of additional "titles." Melanie's Marvellous Marijuana, about how Melanie and her friends all "toke up" after school to "have a wonderful time" including having sex on the lawn. Melanie's Magical Mushrooms, about "taking a trip" and "flying without a plane." And Melanie's Marvellous Masturbation, about which I needn't say more.
If you want to do more on the health front, try some titles like these:
Lucinda's Lovely Leaches (set in the 1700s, "before the AMA corrupted the practice of medicine!").
Darlene's Delightful Diarrhea (hint: drinking unpasteurized milk is "good" because it causes her to lose those extra pounds!).
Vivian's Victorious Vomiting ("just get it out of your system!").
Cathy Catches the Crabs (subtitle: and Cures them with Crystals!).
You get the idea. Create a little blurb for each of these. Maybe a sample of the content for each one. Maybe go into Dr. Seuss territory:
"Cathy hung out with a man we'll call Ted.
Ted said to Cathy, let's get into bed!
They hopped in the sack, and they jiggled their booties
And Cathy woke up with a case of the Cooties!"
"This book tells the delightful tale of a teenage girl who comes down with crab lice, but discovers how to heal them herself, using Crystal Energy. Your teenager will learn why she should trust scuzzy-looking older men more than she should trust evil Western Medicine!"
Put up a website offering these titles along with Measels. Make it look like a complete series. Make it look real, and then spread the meme among the "tasteless humor" crowd, who will Google-bomb it until it goes to the top of the search rankings for the original title. Then when innocent nitwits go to look for the "real" book, they will find "The Melanie Series" and all her quackadoodle friends, and be more than a little shocked.
As for the legalities, "it's satire" and per the Supreme Court, satire is protected speech.
You can do this! Now someone, do it!
Yup, the very same vitamin B17 is also known as laetrile. However, its active ingredient is not arsenic but something even more toxic - cyanide. Yes, everything is a poison and nothing is a poison, it all depends on the dose but eating crushed apricot pits in hope of being cured? Ouch.
RE: # 34
I watched the Brud scam some of my patients in the 80's. He should have been turned into fertilizer decades ago.
As an aside, we see this same effect in politics:
"There is a strong sunk costs fallacy effect at work. It is very hard for victims of a fraud to admit they were gullible, so they construct all sorts of rationalizations."
So much for Hope and Change, a Thousand Points of Light, The Great Society and Law and Order.
I recall having a conversation with a colleague about her investments...she was very "mysterious" about the broker she was using and the types of investments that were returning, year after year, large "returns". She was a "small potatoes" investor (about $ 150,000) and she was involved in a group of cousins and other family members that ponied up "the minimum" joint investment...probably about 1 million USD.
I lost contact with this colleague, but I never forgot the spectacular returns she claimed to have made on her small investment. After a special master was appointed and the names of small and large investors who were scammed by Madoff was published on the internet...I located her name on that list.
We're starting to converge on something:
The common denominator is fraud: lying for gain, and in particular, premeditated, systematic, and organized lying that destroys others' lives while enriching the liar. That would include Birdbrainski and his cancer scam, Madoff, the antivax woomeisters, and others.
What's needed is to mobilize the masses to the point where this becomes a political agenda item, and get the two parties fighting over how to get tough on it. And what it takes to do that is a compelling *emotional narrative* that will go viral. Something that's more compelling than the emotional narratives of fraudsters, such as their dupes pleading for money to take their kid to a quack.
What it takes is for the victims to tell their stories and then publicize the heck out of those stories. "I took my kid to a quack and she died a horrible death..." and "I turned over my life's savings..." and "my kid caught whooping cough from an unvaccinated kid in school..." and so on. Make it heart-wrenching, tear-jerking, emotionally compelling. Make it so compelling that it motivates people to pick up the phone and call their Congressmember.
The place to start would be with an article in a national publication that has a wide audience. Then go to television. Include Oprah, who has a talent for bringing out the emotional stuff and spreading it. Include local news programs, that can find local victims and put them on TV. Key sound bites or slogans: "Fraud kills", and "Fraud destroys." Simple and straightforward, with an endless number of personal stories to back it up. This will work.
--
In other news: a close friend of mine is a few months from getting the all-clear on astrocytoma (brain tumor). Science-based medicine all the way. When we get the official word, we are going to have a family celebration of some kind, though it's hard to even think up something that would adequately express the joy at that news.
I see the YouTube channel is blocking negative comments. Bunch of cowards.
First off, this treatment is not so much more expensive than sta dard treatments such as chemo or radiation. In a real comparison over the entire course of treatment chemo and radiation is far more expensive, a close relative of mine racked up about 500,000 $$ in just 3 months..radiation, mris, and very long hospital stays, plus other crazy drugs, and eventually life support. That price tag was also without transportation or anything else. So you see the problem with real oncology is that their science is old and their methods are harmful, especially for children. Most people on chemo/radiation die, with their lives only extened by a few months of pain.
this is crazy - It is one thing to pay for treatments with known risks and proven efficacy. It is quite something else to pay for something with unproven efficacy and downplayed risks.
@this is crazy
"Most people on chemo/radiation die, with their lives only extened by a few months of pain."
I'm sorry but you have been fed a lie. For example, cancer survival in the UK has doubled in the past 40 years, much of that due to improvements in chemo, radiotherapy and surgery, as well as screening and early diagnosis.
40 per cent of all patients who receive radiotherapy with curative intent survive, and more than 5,000 children's lives have been saved solely through advances in chemo/radiotherapy/surgery since the 1970s in the UK alone. http://info.cancerresearchuk.org/news/archive/pressrelease/2011-11-14-more-children-surviving-cancer
Of course, cancer treatment isn't perfect, and there are many cases where much more research needs to be done into better treatments. Oesophageal cancer, pancreatic cancer, lung cancer, brain tumours - they all urgently need more research effort.
But it's simply wrong to ignore the huge progress that has been made in many types of cancer in recent years, thanks to properly run, free-to-join clinical trials that publish their results in the peer-reviewed literature for the world to see and share - exactly the kind of stuff the Burzynski clinic *isn't* doing.
" a close relative of mine racked up about 500,000 $$ in just 3 months..radiation, mris, and very long hospital stays, plus other crazy drugs, and eventually life support."
But Burzynski's charges are just for drugs and office visits and MRIs and the like. They don't include long hospital stays and life support.
@ this is crazy: "So you see the problem with real oncology is that their science is old and their methods are harmful, especially for children. Most people on chemo/radiation die, with their lives only extened by a few months of pain."
It is customary, when someone makes such a statement...that they provide the statistics from a reputable source..."feelings" about chemo/radiation
mortality rates don't count.
My daugher was recently ill and if I learned anything in the process is that Dr.'s main concern have become their ego's. They like to treat everyone the same and will not look outside the box for treatment even if it is to the benefit of their patient. Everyone who has posted on this negatively about Dr. Burzynski should at least take the time to watch interviews with some of his surviving patients. Most of them had terminal prognosis which chemo being their only alternative that would cause many harsh side effects and only had the hope of prolonging their life a few months not saving it. They said that when they started with Dr. Burzynsky absolutely no promises were made. Not everyone was cured but a 25% success rate should at least draw enough attention to require futher funds for testing. People need to look to why people leave the country when they are looking for a cure for cancer. It's because of all of the money involved. The pharmaceutical companies are not in the business of finding a cure. Please educate yourself. This may not be the cure but at least let's explore it further. There are so many lives at stake.
kducat:
The plural of anecdote is not data.
Based on what data? Where was it replicated? Have you read any of the other articles here that explain that Burzynski is actually using chemotherapy?
Dr. B's treatment is chemotherapy. It hasn't been proven to be effective, though...
>Everyone who has posted on this negatively about Dr.
>Burzynski should at least take the time to watch interviews
>with some of his surviving patients.
And everyone who speaks positively about Dr. B. should talke to the relatives of his deceased patients.
"My daugher was recently ill and if I learned anything in the process is that Dr.'s main concern have become their ego's."
But isn't it wonderful how every doctor in the world took the time to see kducat's daughter so that kducat would get the chance to observe their main concerns?
Not everyone was cured but a 25% success rate should at least draw enough attention to require futher funds for testing.
It depends on the condition, of course. A 25% success rate for, say, Hodgkin's lymphoma or testicular cancer would be flat out awful. But if you mean for something like glioblastoma or pancreatic cancer then you're right. A 25% success rate (defining success as, say, a 5 year survival) would definitely warrant further study. Burzynski's been funded by the NCI. The NCI's spent millions of dollars trying to prove that his "antineoplastons" work. Certainly Burzynski's bilked his poor desperate patients out of enough money to run several clinical trials. His techniques have never been demonstrated to work. No one can reproduce his supposed success and he can't demonstrate it under controlled circumstances. He has no open trials and no completed trials with confirmed positive outcomes despite massive funding. Eventually, one simply has to conclude that it just doesn't work.
So you see the problem with real oncology is that their science is old and their methods are harmful, especially for children. Most people on chemo/radiation die, with their lives only extened by a few months of pain.
Um...no. Treatment options for cancer are changing rapidly, as are outcomes. Especially for children. Consider hematologic maligancies-a group of diseases treated exclusively with chemotherapy and radiation. We could further narrow it down to hematologic maligancies in children: Survival is improving and the 25 year survival rate is 80% for NHL, HL, and ALL. Source: http://www.ncbi.nlm.nih.gov/pubmed/18780868
So if the science is old, why are survival rates changing? If chemotherapy extends life by but a few months, where are the 25 year survivors coming from?
I came across the Skeptical Health blog that has some very interesting evaluations of Burzynski's treatments that I hadn't seen before. Here's a quote on the same blog from the FDA that sums up the current situation:
A relative of mine is being told by a quack called Philip Day in the UK that he shouldn't have a biopsy and that all he needs is a Thermograph. He more than likely lung cancer. Thermography can only see effects on the skin. P****s me right off.
I wondered about this guy -- glad to see him called out so thoroughly.
BTW, I am not a fan of vaccines as they don't yet provide immunisation, but hopefully that will one day happen. Unlikely that it will until we stop giving the manufacturers a free pass that destroys all drive to innovate.
Thimerosal and aluminum have been added b/c vaccination is done from multidose vials. Let's stop that foolishness and take the thimerosal *back* out, and the aluminum too. Why are we adding known neurotoxins just to save a few bucks?
Keep up the good work!!
BTW, I am not a fan of vaccines as they don't yet provide immunisation, but hopefully that will one day happen.
[Citations, please]
Unlikely that it will until we stop giving the manufacturers a free pass that destroys all drive to innovate.
[Citations, please]
Thimerosal and aluminum have been added b/c vaccination is done from multidose vials.
[Which vaccines now contain thimerosal and which vaccines are in multi-dose vials?]
Let's stop that foolishness and take the thimerosal *back* out, and the aluminum too. Why are we adding known neurotoxins just to save a few bucks?
[Citations, please]
Keep up the good work!!
And you can keep reading your alternative anti-vax websites...have a nice day, troll.
@ thixotropic, if you are going to reject vaccines, you might want to actually know about them. Aluminium is an adjuvant and has nothing to do with the anti-microbial action of thimerosal. Incidentally, thimerosal has been removed from all paediatric vaccines, excepting some flu jabs which aren't taken up by infants much anyhow so overall exposure has gone significantly down.
The FDA, State of Texas, and The U.S. government should be working with Dr. Burzinsky to identify what is working and why. We've lost site of what's important in this case....where do you suppose progress will appear otherwise?
The FDA, State of Texas, and The U.S. government should be working with Dr. Burzinsky to identify what is working and why. We've lost site of what's important in this case....where do you suppose progress will appear otherwise?
@john:
No, Dr. Burzinsky should be working with scientists to demonstrate that his method actually works, rather than offering up case studies as if they were definitive proof.
@John - progress should be shown after 30 years of work & studies. Please show us where Dr. Burzynski has shown any substantial progress over that period of time.....
I think that the State of Texas should secede from the rest of the Union due to the fact that its going to go down with the rest of the nation into total enslavement .
I dare say that if Ron Paul don't win the Presidential election the people a guaranteed to be microchip'd . as for Burzynski ! if he had a U S Constitutional Council he could beat big Pharma , Also if the Dr. lost/misplaced his license he could sign his new Phd License without Prejudice U C C 1-207 and then his name he'd be o k and also the fact that no State shall turn a right into a privilege and issue a license and a fee for it its unconstitutional , find a foreman of a grand jury and hang the Bastards'
Option ! move to San Diego and do what the rest of the doctors are doing or call me I know where you can do business lawfully and make enough money to get your own Lawful organisation going the federal mob likes the competition , only you will operate at law and they operate what they learned from Al Capone .
Thank You Joe L'Amarca
I think that the State of Texas should secede from the rest of the Union due to the fact that its going to go down with the rest of the nation into total enslavement .
I dare say that if Ron Paul don't win the Presidential election the people a guaranteed to be microchip'd . as for Burzynski ! if he had a U S Constitutional Council he could beat big Pharma , Also if the Dr. lost/misplaced his license he could sign his new Phd License without Prejudice U C C 1-207 and then his name he'd be o k and also the fact that no State shall turn a right into a privilege and issue a license and a fee for it its unconstitutional , find a foreman of a grand jury and hang the Bastards'
Option ! move to San Diego and do what the rest of the doctors are doing or call me I know where you can do business lawfully and make enough money to get your own Lawful organisation going the federal mob likes the competition , only you will operate at law and they operate what they learned from Al Capone .
Thank You Joe L'Amarca