A brief fable about a pharmaceutical company for the benefit of believers in "alternative" medicine

Here's a little thought experiment for proponents of "alternative medicine." Imagine, if you will, a small pharmaceutical company. Founded in the 1970s, it has starts out with only one product, a drug that its founder thought to be a very promising anticancer agent. So enamored of this particular drug was the founder of the company that he left a job with an academic medical center, founded his own clinic, and then his own research institute and company to manufacture the new drug. After first having painstakingly isolated the substances that make up his drug, he later started to synthesize them. Over the years, the company grew and became more famous.

Things looked really good for this little company. Patients were very interested in what it was selling, and its reputation grew and grew in a certain segment of the cancer community. There was just one problem, however. This drug didn't have FDA approval. What that meant was that it couldn't be used except under the auspices of properly constituted clinical trials because it's an unapproved drug. So the company set them up, dozens of phase II trials over the course of a couple of decades. In the meantime, the company published paper after paper in low tier bottom-feeding journals in what is often referred to as the MPU (minimal publishable unit). These papers tended to be quickie cell cultures studies, case reports, and small case series. Somehow, despite racking up over 60 clinical trials over 20 years, the company never seemed to publish the results of any of them, certainly not in a form that would allow other scientists to judge of the drug had efficacy against the tumors claimed. After a while, the company stopped trying, or so it seems, given that the number of publications in peer-reviewed journals indexed on PubMed ceased years ago.

Pretty horrible, isn't it? You'd be outraged at such behavior, wouldn't you? And rightly so!

To fund the company, patients who agreed to take part in these clinical trials were charged huge sums of money, tens, even hundreds, of thousands of dollars. Oddly enough, through all these clinical trials, almost every patient received the new drug. There was never much of an effort to do proper randomized clinical trials to determine if the drug really was efficacious against the tumor types being treated. Over time, a group of sycophants, toadies, and lackeys sprang to promote the clinic, claiming the drug could cure even the most horrifically advanced cancers. Stories of "miracle cures,' all without sufficient clinical evidence presented to allow a reasonable determination of whether or not the tumor shrinkage and good outcomes observed were really due to the new drug. The drug remained unapproved by the FDA or any other governmental body, but that didn't stop the company from administering it to thousands of patients.

The company also promoted the drug prodigiously, with its founder frequently doing interviews with fans wanting to promote this new drug as a "miracle cure." A filmmaker whose company specializes in informational videos for corporations made a movie about the company and the man who founded it. In the process, this filmmaker brought more publicity and notoriety to the company than ever before. Around the same time, a cottage industry of websites, blogs, and YouTube channels arose, all portraying the company as a miracle and its founder as a scientific genius. To what degree the company aided and abetted this online promotion is unknown, but it clearly cooperated with the filmmaker and at the very least did nothing to dispel the hagiographies or the claims made for its products in these videos. Meanwhile, the founder of the company gave interviews to an ex-TV star turned hawker of exercise devices and dubious health products. This ex-TV star devoted an entire chapter to the founder and his treatments in a book she ultimately wrote about "doctors who are curing cancer," basically promoting the founder's message that his therapy was natural, nontoxic, "not chemotherapy" (it is chemotherapy), and "targeted" to the genetic abnormalities of the patient's tumor. It ignored all the evidence that the drug company's treatment had been associated with significant toxicities and even possibly deaths because of its high sodium load. Such complaints, the company dismisses as being inconsequential and the toxicities "minor and easily managed."

it all sounds very unethical, doesn't it? You'd be outraged at such behavior, wouldn't you? And rightly so!

The company also became very insular. Because its drug was not FDA-approved and the evidence that it did what was claimed for it was weak, there arose...critics, skeptics who did not believe the hype, skeptics whose scientific examination of the company's claims did not come to the same conclusion as the company did, so much so that they viewed the company's claims as the equivalent of false advertising. The company did not like this. So it hired a man to threaten and bully them, including a teenaged boy who was sent pictures of his house as a clear message that the company's man knew where the boy and his family lived. This particular PR scheme backfired; so the company was forced to fire the man because he had gone too far. He was now a liability causing more harm to the company's reputation than good. He was, to put it mildly, a major embarrassment.

Not that the company learned a lesson. Oh, no. It helped filmmaker make a second infomercial for it. This informercial was even more focused on attacking the company's critics than the first movie. The company then hired a new PR person. Through it all, there remained no convincing evidence from randomized clinical trials to demonstrate the efficacy and safety of its primary drug product, despite 30 years of existence, which led the company to try to diversify into a different product areas. the first area was "personalized" gene-targeted anticancer therapy. After all, genomics has become a hot area, and analyzing tumors to guide therapy is increasingly becoming viewed as the future of oncology. The problem was that the company had no expertise in genomics, interpreting network biology, or using genomic data to guide therapy. so it basically outsourced the job. More promising and lucrative was the company's foray into anti-aging medicine. In essence, it found a new way to market its main product.

So what would you think of a pharmaceutical company like this? Let's recap. The company:

  • Markets a drug that is not FDA-approved
  • Charges patients on clinical trials exorbitant sums of money, leading them to desperate fundraising efforts.
  • Runs dozens of clinical trials but never publishes the results.
  • Hired an online thug to bully and intimidate critics

You'd be outraged at such behavior, wouldn't you? And rightly so! Such behavior would be unacceptable, as it is exploitative and harmful to patients. You'd want the FDA or other government enforcement agency to swoop in and do something. You'd want the state government to do something to stop this pharmaceutical company. You'd want the state medical board to shut down the doctors using this stuff without its having been FDA-approved. You'd want it to be prosecuted to the fullest extent of the law, wouldn't you?

Sure you would! And rightly so!

Yes, if this pharmaceutical company's name were Plexxikon, or if it were larger, for instance Merck, Sanofi-Aventis, Bayer, or Bristol-Myers Squibb, and it did these sorts of things, you'd view it as confirmation of your view of rapacious pharmaceutical companies concerned only with profits and not with patient well-being or science. You would certainly not believe its spokesperson if he said that the company is only doing it to help as many patients as possible because its founders "know" that its drug works so much better than current therapy. You wouldn't believe the filmmaker who is producing the infomercials about the company and its "miracle" drug when he says that the company doesn't charge patients for its drug or to be on its clinical trials but rather charges a "case management fee." You'd consider that so transparently a dodge that your intelligence would be insulted that anyone even tried that line on you, even more so after you learn of a lawsuit by a woman dying of cancer whose complaint is that the company requires patients to buy all other drugs used from a pharmacy it owns at inflated prices. You wouldn't believe the company's claims that the government was out to get it. In fact, you'd wonder why the government has been so easy on it. You'd wonder why the company can keep registering phase II trials for an unapproved drug, charging patients, while seemingly never publishing its results. You'd wonder how it could apparently keep using the drug even in patients who are apparently not on clinical trials, even though the drug is not approved.

You'd wonder all this, unless, of course, the pharmaceutical company were a "research institute" run by a man named Stanislaw Burzynski. Then it's all OK, the government really is out to get the company, and he is to be defended tooth and nail at all costs.

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Incredibly painful double standard, isn't it? Exceptionally dubious and unethical behavior in big companies is lauded as sticking it to the man whenever someone becomes the alt med darling of the week.

Why does no one wonder where all the money for the really expensive medicine goes? Surely Burzynski has to pay taxes. And why is it perfectly okay to pay tens of thousands of dollars on bogus treatments, the results of which never get published, but the idea that pharmaceutical companies have to pay millions in R&D for a single drug is scoffed at?

Cue an appearance on Dr. Oz in three.... two.....

Nicely played but not nearly enough outrage against the perp. Dr B is a scam artist of the first order. And he has been at it for decades with greed and glee and zero compassion for his victims.

"The company: Markets a drug that is not FDA-approved"

Sorry, that alone qualifies the company for sainthood in the woo-niverse.

By Dangerous Bacon (not verified) on 20 Feb 2013 #permalink

Orac, I think you may be downplaying a major point of insidiousness in regards to Dr. B and his acolyte(s). All they want (need) is major publicity. I can't begin to count how many quite "well-meaning" (but totally uniformed) family members and friends referred me to this snake-oil salesman when I first discovered I had metastatic renal cancer. Unfortunately the feds are not going to come the rescue and of course he knows it. His game is all about market share, not scientific integrity or basic ethics. That is why his shills are so scared of anyone exposing the truth as you and many others do so well. The problem remains that it takes a lot of time and effort to find you guys. And for some, by the time that happens (if they are even that fortunate), the damage has already been done. Those who still remain unconvinced are his marks and true believers. If the FDA ever does wake up and try to shut him down he will be even further martyred. That kind of publicity "might even be good for business" as Sam Spade once said.

Adding to the fable, a defender of the company brags about how great the treatment is, and when challenged for an explanation for why this life-saving discovery hasn't been properly reported so that it can be used worldwide, coldly replies:

If I held patents that could change the paradigm of the current cancer merry-go-round, I would not be looking to advertise it, until I finally got the product registered.

The defenders of the company think the company's bottom line is more important than all the cancer victims who could be saved. After all, cancer is big business!

I can't claim to read Burzynski's mind, but Neil may be right. Martyrdom is connected to the Galileo Gambit: The Man is suppressing the Truth because it conflicts with Received Wisdom. (Never mind that the people who play this gambit generally have reversed the sides of Truth and Received Wisdom.) And martyrdom is frequently good for the martyr's business associates, as we can see in the history of several religions.

By Eric Lund (not verified) on 20 Feb 2013 #permalink

Don't forget:
- that this company requires its patients to purchase the drug from a company-owned pharmacy at enormous markup, despite (because of?) its widespread availability
- patients have been harmed by the extraordinary amount of sodium in the treatment when they did not drink the required 5 liters of water daily
- followup on some of the advertised success-story anecdotes is impossible because the patient in question died

and on, and on, and on....

And it seems we're being hit by woo-centric documentaries right and left: I fear that it's the *nouvelle vague* about to crash over our heads. Perhaps its the media of choice for woo: Dr B, Gary Null, various anti-vax opera...

And here's another one: ( @AoA) "Canary Kids" declares that
"we have the power to stop the autism epidemic in its tracks".. and how will they do that?

They'll create a film to spread the gospel of anti-vax plus**, funded by " parents, scientists, writers, and people who 'get it'" utiilising the services of an "award-winning documentary director and former law partner", Mary Mazzio.

Imagine, they ask, if a film could get the general public to question their medical choices like 'Food, Inc" got audiences to consider fresher, greener food choices, the viewers might stop vaccinating and using anti-biotics for ear infections and go organic, use homeopathy, replace toxic cleaning and personal care products and continuously badger their representatives.

There's a new condition, called "almost autism" which includes just about every chronic condition. The film makers will follow seven children with autism, asthma, ADHD, chronic Lyme and other conditions, providing them with free alt med services for 18 months, documenting the startling "transformation" that will most certainly occur.

This masterpeiece is being initiated by Beth Lambert of Epidemic Answers: they have 70K USD already and are soliciting funds for the remaining 180K USD: it's slated for a "theatrical release".

It's obvious to me, as a psychologist and sometimes propagandist, why alt med prevaricators would choose film as their media of choice- it's easier to lie, provide "data" and raise emotional reactions with stirring or ominous music as well as showcasing touching and sincere testimonials.

I'm sure that the rest of the anti-vax community has ideas for films of their own- they can be useful for fundraisers by staging premiers and distributing copies or via web release pay per viewing. ( see prn and natural news)

** the Canary Party's agenda extends beyond vaccines and autism to general toxin-phobia and chronic illness.

By Denice Walter (not verified) on 20 Feb 2013 #permalink

So what is the threshold for such a company above which it can be classified as being a part of the "Big Pharma" conspiracy?

By Tom Herling (not verified) on 20 Feb 2013 #permalink

So what is the threshold for such a company above which it can be classified as being a part of the “Big Pharma” conspiracy?

That depends on appearances. If they can depict themselves as part of the altie tribe, it won't matter how big they get. If they're branded as "conventional" their mere existence will classify them as a member of Big Pharma.

By Bronze Dog (not verified) on 20 Feb 2013 #permalink

And in this fable, patients and their families were received by nurses and medical staff who were amazing at making them feel good and warm and fuzzy all over. A loving staff would compassionately reassure them when they had double vision, or couldn't stand or swallow or speak coherently, or their tumor was growing, that all was well; it meant the drugs were working! That they were making progress clear up until the day they died!

@Bronze Dog "That depends on appearances. If they can depict themselves as part of the altie tribe, it won’t matter how big they get. If they’re branded as “conventional” their mere existence will classify them as a member of Big Pharma."

So, if it's only a matter of semantics, if Pfizer, Merck, et al, rebranded themselves as something like "Mom's Alternative Health Products" they'd no longer be considered Big Pharma. Sounds like a strategy that'd cover both sides of the market.

By Tom Herling (not verified) on 20 Feb 2013 #permalink

So, if it’s only a matter of semantics, if Pfizer, Merck, et al, rebranded themselves as something like “Mom’s Alternative Health Products” they’d no longer be considered Big Pharma. Sounds like a strategy that’d cover both sides of the market.

It'd be tricky to convincingly pull off. A lot of alties would probably notice and spin conspiracy theories about how Big Pharma is trying to sneakily poison them by wearing sheep's clothing. The false dichotomy involved in their narrative would be preserved.

If they did manage to pull off the rebranding, the quacks would just find a new division they could use for special pleading for why their treatments shouldn't be judged by the same criteria as the ones that actually work.

By Bronze Dog (not verified) on 20 Feb 2013 #permalink

Nailed.

It's a multi-million dollar corporation, run by a twisted lying old fraud who only cares about how much money he makes and who hides the results of trials that he doesn't want the public to see - just like Ben Goldacre points out with Big Pharma, Big Burza does the exact same thing.

15-bedroom mansion paid for by the goodwill of the world's most desperate people. He's a monster.

By Mark McAndrew (not verified) on 20 Feb 2013 #permalink

@Tom Herling

So, if it’s only a matter of semantics, if Pfizer, Merck, et al, rebranded themselves as something like “Mom’s Alternative Health Products” they’d no longer be considered Big Pharma. Sounds like a strategy that’d cover both sides of the market.

No, no, no. That's too obviously a Big PharmaTM style name. You need something more Mother Earthy, like, I dunno, Seven Seas. If you were a company like Merck and happened to want to get into the natural supplement market, that's the sort of name you might pick.

@lsm - That's pretty much the perfect summary. Gut-wrenchingly sad, but totally accurate. Reading the stories on TOBPG of people suffering for two years, hypernatraemia, rashes, headaches, seizures, collapsing, and being told "Oh awesome, that means you're nearly there, it's working!". Families get so excited and start to have hope, and then BAM! DEAD!

Makes me livid.

@Denise - I'm going to pretend that you're having 'opposite day' today and trolling us, instead of being your usual fabulous self, because that 'almost autism/chronic f*cking Lyme child torture' stuff is making me want to vomit. If I believe any of it is real then my mind will implode with rage.

Hmm. Comment must be in mod.

lsm - Perfect assessment

Mark - "monster" doesn't I'm far enough for me. He's a maniac.

@Denice Walter

Could you send me an email? I want to pick your brain about something. My contact email's on my blog.

@ elburto:
My own fabulousness pales beside your own.
You cannot implode. Period.

@ Todd W.:
Ask and you shall receive.
I don't use e-mail to communicate- except for first cousins and exes, believe it or not- I suggest you do it on an older thread so that we don't de-rail this one any further. Perhaps where the Thing was dispatched into obliivion (again). I'll look.

@ all:
So sorry but I thought that my 'message' needed to be on a current thread and I was also in a great rush to get it out because of other matters going on here. Rather upsetting.

I think videos and movies are the trend for woo..

By Denice Walter (not verified) on 20 Feb 2013 #permalink

@Denice Walter

Well, it is for a blog post idea I had, so I wanted to avoid public discussions about it before I write it. Do you have any dummy/throw-away accounts you could use, or some other means to communicate directly?

- patients have been harmed by the extraordinary amount of sodium in the treatment when they did not drink the required 5 liters of water daily

Has Burzynski ever explained why so much sodium is needed anyway?

By Andreas Johansson (not verified) on 20 Feb 2013 #permalink

If [Big Pharma] did manage to pull off the rebranding, the quacks would just find a new division they could use for special pleading for why their treatments shouldn’t be judged by the same criteria as the ones that actually work.

To make a cosmological analogy: It's turtles all the way down.

By Eric Lund (not verified) on 20 Feb 2013 #permalink

Andreas: Someone who knows more is welcome to correct me on this, but I assume the sodium is there to keep the ANPs in solution. A lot of organic acids are not that soluble at physiological pH (around 7.4, necessary because Burza is dosing patients by infusion directly into the bloodstream). You can solubilize amino acids by lowering the pH, such as by using addition salts with strong acids (e.g. the hydrochloride salts), but to get solubility at physiological pH you need to make them into salts with bases. Sodium is probably the most tolerable - potassium would kill quickly (it's drug #3 in the standard lethal injection protocol), I can't think of another metal that would be better, and equally I can't think of an organic base that would be acceptable in the huge quantities that are required to balance out the ANPs. Over to the experts.

@ Dangerous Bacon #3:
' “The company: Markets a drug that is not FDA-approved”

Sorry, that alone qualifies the company for sainthood in the woo-niverse.'

Why does the very term "FDA" send alties into knee-jerk apopletic fits? Maybe this isn't the right forum, but I have often thought that it would be helpful to have somebody explain "Clinical Trials and the FDA for Dummies" for lay people, and especially alt med enthusiasts. It is really quite a remarkable system of built in protections, and checks and balances. When I had a scientist explain the process, from basic research at the beginning to drug approval at the end (on a very long drive), it resulted in a paradigm shift that landed me firmly on the side of science. I do realize that it's pretty elementary to most people here, but I sure did learn from that personal explanation.

By the way, love the terms: woo-niverse, Big Burza

I fear that it’s the *nouvelle vague*

"Vague" is le mot juste.

By herr doktor bimler (not verified) on 20 Feb 2013 #permalink

@Denice - Thank you!

Implosion averted, via cake and therapeutic opiates.

Oh and the autocorrect has been punished for misspelling your name.

@lsm -

Why does the very term “FDA” send alties into knee-jerk apopletic fits?

Want to hear something hilarious? Even wooligans here in the UK froth and gnash their teeth upon hearing "FDA". Muppets.

When I've asked various sCAMfans "Do you mean the MHRA?" they just stare blankly, and it just ends online conversations. I love it.

When I’ve asked various sCAMfans “Do you mean the MHRA?” they just stare blankly

I too am staring blankly, but I have never lived in the UK. What exactly does MHRA stand for?

By Eric Lund (not verified) on 20 Feb 2013 #permalink

"Why does the very term “FDA” send alties into knee-jerk apopletic fits?"

Alties are frequently whipped up into panic by supplement dealers and conspiracy theorists*, who run online campaigns declaring that the FDA, the European Union, Codex Alimentarius etc. have banned or are about to ban sales of alties' favorite woo, in order to benefit the Giant Alien Lizards who run Big Pharma. These bans never seem to materialize**, but the scare campaigns work every time.

*there's a lot of overlap between these groups.

**what's promoted as a "ban" is typically any effort, no matter how small, to regulate supplement sales to protect consumers.

By Dangerous Bacon (not verified) on 20 Feb 2013 #permalink

Alternative medicine supporters love delving deep into the dirt when it comes to big pharma, yet they only look at the facade of their beloved quackery and claim they've researched everything.

To make a cosmological analogy: It’s turtles all the way down.

I think that may be cosmogonical.

@ herr doktor bimler:
Well, why do you think I used it? Wasn't just a referring to the history of film, you now.

By Denice Walter (not verified) on 20 Feb 2013 #permalink

@ ABC:

Right. And for some reason they don't seem to like anyone else delving deeply into the secrets of one of their brave maverick doctors or alt media prevaricators.
Usually they'll dismiss the results to *reductio ad pharma* . GMC? Pharma. Dr Barrett? Pharma. Goldacre? Pharma. Orac? Pharma. Shills & Minions? Pharma.

By Denice Walter (not verified) on 20 Feb 2013 #permalink

@Denice - What do you think they would do if they found out that one of their foremost alt-med leaders was in bed with Big (Big, BIG) Pharma? Worse yet, Big Pharma with a history of corruption. How do you think they would respond?

@ S:

They'd probably say that the sceptics made it all up.

That wouldn't be Big Pharma as in one of the Johnson family?

By Denice Walter (not verified) on 20 Feb 2013 #permalink

@Dangerous Bacon

Alties are frequently whipped up into panic by supplement dealers and conspiracy theorists*, who run online campaigns declaring that the FDA, the European Union, Codex Alimentarius etc. have banned or are about to ban sales of alties’ favorite woo, in order to benefit the Giant Alien Lizards who run Big Pharma.

Not just their favorite woo, they make hysterical claims that garlic etc will become illegal. It never occurs to them how absurd their claims are. The garlic one is especially hilarious.

By Militant Agnostic (not verified) on 20 Feb 2013 #permalink

@Denice - You mean J&J? No. If I tell you, I'll need to go away and come back reincarnated at some future point.

@Todd W - #15

I noticed one of the product categories on the Seven Seas homepage was "Haliborange", which made me think of the infamous oilfield service company Haliburton.

By Militant Agnostic (not verified) on 20 Feb 2013 #permalink

@ S:

Oh come on! Teaser.
You know you can 'disappear' and re-appear with a cryptic new 'nym that highly literate insiders can figure out. I don't think that that would merit official disapproval.

By Denice Walter (not verified) on 20 Feb 2013 #permalink

OMIGOD! YOU WERE TALKING ABOUT BURZYNSKI! I did NOT see that coming!

By rjblaskiewicz (not verified) on 20 Feb 2013 #permalink

Reading Bad Pharma has been really interesting. He nails a number of tactics that Burzynski has been using for years, including things I was surprised by, like FOIA requests into study design (for trials of an OLD drug) being denied because of "proprietary laws." That type of thing. Ben's book rings quite true.

By rjblaskiewicz (not verified) on 20 Feb 2013 #permalink

MESSAGE BEGINS-------------

Ah, Bacon, we are not "giant lizards" my nitrate soaked minion. We're of average stature among the marauding species here on Terra, just a scale over 7 feet. The Kthrakxx are far more menacing, if not continuously bipedal. Up on their back four they're almost ten feet! Fortunately they're spindly and easily toppled.

Miss Flinders has just informed me that I "am, like, all SIWOTI" and am being pedantic. Well that certainly sounds awful.

Carry on with your insidious deeds and choose your accessories wisely . . .

Lord Draconis Zeneca, VH7ihL
Forward Mavoon of the Great Fleet, Grand Vitara of Altoona, All SIWOTI, All the Time

Glaxxon PharmaCOM Orbital
00000011110101011010101011011010101010

------------------------------MESSAGE ENDS

By Glaxxon PharmaCOM (not verified) on 20 Feb 2013 #permalink

what became of the Kilrathi?

By al kimeea (not verified) on 20 Feb 2013 #permalink

MESSAGE BEGINS------------

Minion Al Kimea:

They were delicious, as I recall . . . crunchy, even in içval'k

LDZ, VH7ihL
--------------MESSAGE ENDS

By Glaxxon PharmaCOM (not verified) on 20 Feb 2013 #permalink

they make hysterical claims that garlic etc will become illegal

An artist's depiction of government attempts to stamp out the garlic trade.

By herr doktor bimler (not verified) on 20 Feb 2013 #permalink

By the second sentence, I already knew this was going to be about Burzyinski... hmmm, does that mean Orac is predictable, or that I'm a smartass? ;)

That garlic's still legal is conclusive proof we're, in fact, not ruled from behind the scenes by a malevolent vampire cabal.

Part of the appeal of "alt" anything is that chosing it symbolizes a rejection of the status quo, "the system", "the Man", etc. Which is why TVTropes has a page about The Man Sticking It To The Man.

By Andreas Johansson (not verified) on 20 Feb 2013 #permalink

Hi, I've been told by my brother (who's into herbal medicine) that Aloe vera has been banned in certain American states. Could this be a misconception, just like the one about garlic?

Pharma-multinationals look in many ways like financial multinationals. There main goal is profit (not health or good products for clients) and they do everything, including cheating, lying, manipulating etc. to achieve their goals. Whether this is not in favour or even harmful for people is not important.
So, Big Pharma is not primary working for your health, but for their own welfare.

"Alties are frequently whipped up into panic by supplement dealers and conspiracy theorists*, who run online campaigns declaring that the FDA, the European Union, Codex Alimentarius etc. have banned or are about to ban sales of alties favorite woo, in order to benefit the Giant Alien Lizards who run Big Pharma."

I am very grateful for the codex ailimentarus since it creates standards by which the quality of food can be measured. e.g. my kids need gluten free food since they're coeliac and the codex defines it as < 20ppm so food producers know exactly where they stand.

As for the European Union, a few years back they banned a whole pile of food supplements and require others to be proven safe. There was much wailing and gnashing of teeth by the woomeisters over this but it really is they only way this stuff should be regulated.

The FDA has been emasculated so that it doesn't ban anything until it is proven harmful - the opposite of the EU. Such a regime means no manufacturer is any hurry to prove their drugs are safe, or do anything at all for that matter, because its up to the others to prove they're not.

I can't describe my feelings of disgust when I travel to the US, enter a "reputable" pharmacy like Walgreens or CVS and see quack pills and tonics boasting health claims alongside genuine medicines. A big health claim and and then "this statement has not been evaluated by the FDA" buried in small print. If this crap is allowed to be sold that at least there should be a legal requirement that it is not sold within proximity of the pharmacy counter, or proven efficacious drugs - say 5 meters. Basically force this shit into a corner away from the real stuff and put a separation in people's minds.

@Andreas Johansson

Of course we're not ruled by vampires. We're ruled by a master race of giant... er, averagely statured... lizards. Everyone knows that.

As an aside, I'm eagerly awaiting the coffee table book edition of "The Best of Communications from Glaxxon PharmaCOM Orbital: An Anthology". I'd totally buy that.

There main goal is profit (not health or good products for clients) and they do everything, including cheating, lying, manipulating etc. to achieve their goals. Whether this is not in favour or even harmful for people is not important.

How is this any different from Big Altie?

When garlic becomes illegal, it only means I'll have to grow more of it in my garden.

I feel confident that the claim of aloe vera being illegal in any state in the Union is pure crankery. Though if you sell an aloe vera product with the claim that it cures cancer, inflammatory bowel disease and paranoid delusions, eventually the FDA may send you a cranky letter.

By Dangerous Bacon (not verified) on 21 Feb 2013 #permalink

@Mey - then you would agree that we need a robust regulatory environment for these companies to operate in then, wouldn't you?

I find it very interesting that alties can rail against "Big Pharma" and the FDA in the same breath, then use some FDA-cited action as proof that "Big Pharma" is corrupt - when the FDA is supposed to be just as corrupt.

The sure sign of wooishness (or just general craziness) is the ability to hold diametrically opposed opinions / positions and not see a problem with it (i.e. FDA & Pharma are bad, but the FDA is good when it sticks it to Pharma?)

Richard: I'm pretty sure aloe vera is still legal. Last I knew, you could evn buy your own aloe plant.

By Politicalguineapig (not verified) on 21 Feb 2013 #permalink

Of course we’re not ruled by vampires. We’re ruled by a master race of giant… er, averagely statured… lizards. Everyone knows that.

Average human size is about equal to that of a Komodo dragon, which surely qualifies as "giant" by lizard standards.

By Andreas Johansson (not verified) on 21 Feb 2013 #permalink

In other news for film aficionados:

AoA informs us that a dramatic television film revealing the storied past of one Andrew Wakefield is now available via You tube. The 2003 film was aired once and then, for some uncanny reason, disappeared. Wakefield is portrayed by an accomplished actor- which is appropriate- unfortunately not Mr Pitt. It's called 'Hear the Silence'.

Also "the allegations of Brian Deer" is available on ScienceIsrael- in English with Hebrew subtitles .However, I am unable to link to that website. AoA links to the well-known Canary Party diatribe by Ms Larson.
-btw- that already sounds like a film title...comme "The List of Adrien Messenger', "The Bitter Tears of Petra von Kant"...
How about " The Proven Allegations of BD"?

By Denice Walter (not verified) on 21 Feb 2013 #permalink

Aloe vera is not illegal in the US however there may be situations where it is declared an invasive species and local laws prohibit planting. I know of no such situations, it is just a theoretical possibility.

Alties are always seem to be outraged by the Supreme Court or Obama or Liberals for passing laws banning [....fill in the blank...] when no such thing happened.

By baravelli (not verified) on 21 Feb 2013 #permalink

@ Adam:

I have been following the stylistic rantings upon Codex by Robert Verkerk ( ANH) and Gary Null** for over 10 years. They continuously frighten people that standard supplements will be banned or available only with a doctor's prescription or only in very low dosages- not the hundreds of mg capsules supplement scarfers habitually cherish.
" How can you get to 5000-10000 mg of vitamin C a day if you're limited to 50mg doses?", they warn. Herbals are also on the list.
And always, it seems that this ban or limit is a year away or already in the works.

@ Andreas:

Believe it or not, there is no intergalactic plot to take over the planet by humanoid reptilians through pharmaceutical manipulation of h. sapiens' higher order mental processes in the PFC, enslaving them to do the bidding of said humanoid reptilians- that is, when they aren't prepared julienned, *au gratin* for lunch.

Lord Draconis is merely the invention of a very clever fellow who lives in Northern California and is employed in creative enterprises. I do not work for Lord D, live thousands and thousands of miles away and have never even met him: all of which probably makes us siblings in the virtual realm.
I have, however, given him advice on fashion choices.

** some of his earlier articles are probably hiddenand buried amongst the 700+ pages of listings on the GN "blog", moved from his old website.

By Denice Walter (not verified) on 21 Feb 2013 #permalink

"Big Pharma bad" = "alt-med good."

That makes about as much sense as the phrase, "my uncle is sick but the highway is green."

By Tom Herling (not verified) on 21 Feb 2013 #permalink

Filthy lucre is NOT a motivating factor behind alt med cures.

Proof can be found in today's USA Today ad for chiropractor-designed "Bambusa miracle socks" made from a "pain-busting microfiber" (it uses "special negative-anion technology" to increase blood flow to your feet, very beneficial to diabetics and all the proof you need can be found in the testimonials (JohnG. of California felt immediate results and says "I will be replacing my entire set of dress socks with these Socks!").

No price is given, just a phone number to call for your order but you get two free bonus pairs of miracle socks! So they're just giving this miracle away.

Oddly, there is a Quack Miranda Warning at the bottom of the ad in tiny letters, but that must be the result of a Pharma plot.

By Dangerous Bacon (not verified) on 21 Feb 2013 #permalink

Richard, go and buy your brother an aloe vera plant. I'm sure there are plenty at your local gardening store.

The "Bambusa Official Site" makes some rather extraordinary claims.

"will work for anyone with mild to severe pain..."

"each strand is infused with natural ingredients that increase oxygen and circulation to whatever part of the body..."

If you begin their order form process, it shows that two pairs of black socks size large costs $119. USD. They give you two additional pairs free.

One pair of small size black colored socks is $59.95.

They're a bunch of ...

Bambusa or bamboozle?

By Denice Walter (not verified) on 21 Feb 2013 #permalink

Denice Walter:

AoA informs us that a dramatic television film revealing the storied past of one Andrew Wakefield is now available via You tube.

The search in Youtube did not work because it has been subtitled in Hebrew: link to "Hear the Silence".

I need to run, and will probably watch later. But I think it would be awesome if someone with skills I do not have put in captions on what really happened. Though it could be a prime candidate for Mystery Science Theater 3000 treatment.

....and in other current 2013 AoA news, Lance Armstrong's fantastic achievement in winning his 5th Tour de France in 2003 is acclaimed by the Age of Autism team, putting him on a par with Wakefield as a modern hero and equating his triumph alongside Wakefield's glorious dismissal of MMR.

But I think it would be awesome if someone with skills I do not have put in captions on what really happened.

Given that the original appears to be available as a torrent, it would be pretty straightforward to add an .srt file. Tedious, but straightforward.

Denice@61
continuously frighten people that standard supplements will be banned or available only with a doctor’s prescription or only in very low dosages
There is always a struggle with the FDA over something. Right now it is harder and twice as expensive to get IV vitamin C. Similarly, better versions of folate and vitamin B6, among others. A year's hiccup in supplies, or denial of generic medicines, while the FDA polishes its pud and special favors, can and does injure people.

...not the hundreds of mg capsules supplement scarfers habitually cherish.
you surely mean *gm* capsules

Tom: Mi tío está enfermo, pero la carretera es verde was the only Spanish I knew for years. I miss Mad magazine . . .

By Pareidolius (not verified) on 21 Feb 2013 #permalink

MESSAGE BEGINS------------------

Of course, I'm entirely fictional as Cadre Le . . . I mean, Dennis Walter says. Average sized reptiloids and cabals of inbred Europeans taking over the world? Hilarious . . . or is that just what we want you to think?

(presses button frantically)

Dammit Cindy, where is my theramin music and thunder?!?

Lord Draconis Zeneca, VH7ihL
Forward Mavoon of the Totally Fictional Fleet, Grand Vitara of Nowhere in Particular, Flying Figment of Fate

Glaxxon PharmaCOM Orbital
00010111010101001111010101010101

----------------MESSAGE ENDS

By Glaxxon Pharma… (not verified) on 21 Feb 2013 #permalink

(I should have said "has a live tracker." We'll see if anything ever comes down.)

@ Lawrence 57
"The sure sign of wooishness (or just general craziness) is the ability to hold diametrically opposed opinions / positions and not see a problem with it (i.e. FDA & Pharma are bad, but the FDA is good when it sticks it to Pharma?)"

The same type of crazyness and williness to believe any and all nonsense is very visible among climate change deniers. There are a couple of lovely papers out by Stephan Lewandowsky and his collegues that are hilarious, (well in a very dry academic way).

The first paper catchily entitled "NASA faked the moon landing—Therefore (Climate) Science is a Hoax: An Anatomy of the Motivated Rejection of Science" available at http://www.climateaccess.org/resource/nasa-faked-moon-landing%E2%80%94t… Hint perhaps some conspiracy theoristic work) led to a massive outpouring of conspircy theories about the paper that resulted in the second paper "Recursive fury: Conspiracist ideation in the blogosphere in response to research on conspiracist ideation" available at http://www.frontiersin.org/Personality_Science_and_Individual_Differenc…

More conspiricy theories are being mooted about based on this second paper. The researchers no longer even have to go looking for data it's being hurled at them.

While the topics differ the reactions appear to be the same.

Oh somewhat off the topic but since Burzynski is a paragon of bad practice I thought I'd mention that a number of people including Ben Goldacre of Bad Science are heading a movement to register all clinical trials. I doubt that this would affect Burzynski or his worshippers but it should greatly help the file drawer problem.

Report on progress at http://www.badscience.net/. It sounds like the response has been very strong in the U.K.

If anyone wants to support it they can sign the petition at http://www.alltrials.net/

By jrkrideau (not verified) on 21 Feb 2013 #permalink

AoA has a YouTube link to the Banned-In-Britain Wakefield film and it has Hebrew subtitles but the dialogue is all English

Yah, but those subtitles are hard-coded. Retitling is going to require an original.

@ prn:

'hundreds of mg capsules' as in 500 mg.

By Denice Walter (not verified) on 21 Feb 2013 #permalink

My dearest Lord Draconis,

I not sure whether your knowledge of European spelling patterns or your ability to visually ascertain terran humanoids' sex is amiss. Probably both. What's the use?

At any rate, none of us here are inbred,

Sincerely,
DW

By Denice Walter (not verified) on 21 Feb 2013 #permalink

Oh deer! I have skimmed through video, and it is horrendous. Over dramatic, slimy, creepy, self serving and nauseating.

I think the only way I could watch the whole thing is if someone did a MST3 take on it. But it would take a very strong stomach.

Oh, and there were two huge lies before the end credits. The first was that there was more research confirming Wakefield's, which is wrong. And that there was going to be nor more research, and this is why:

Lancet 2004; 364(9438):963-9
Pediatrics 2004; 113(2): 259-66
Arch Dis Child 2003; 88(8):666-70
Pediatrics 2002; 110:957-63
N Engl J Med 2002; 347(19):1477-82
BMJ 2002; 325:419-21
BMJ 2002; 324(7334):393-6
Pediatrics 2001;108(4):E58
Arch Pediatr Adolesc Med 2001;155(3):354-9
JAMA 2001; 285(9):1183-5
BMJ 2001; 322:460-63
J Med Virol 2000; 62(3):377-82

Because there was no reason to research it anymore, because St Andy was found to be wrong, wrong, wrongety wrong.

Of course, one good thing about that movie is that it brought Brian Deer in to look at the actual story. So instead of St. Andy being just wrong and very bad at research, it was found out he was a blatant fraud. Now that is a movie that would be interesting to see.

@ Chris:

"Over dramatic, slimy, creepy, self serving and nauseating"

So it was true to life.

By Denice Walter (not verified) on 21 Feb 2013 #permalink

The flying fickle figment of fate ... what?

By Mephistopheles… (not verified) on 21 Feb 2013 #permalink

@ Chris: You have unending patience to even "skim" the video.

I'll still wait for the showing on TV where I can record it and view the overly dramatic, slimy, creepy, self-serving and nauseating crap...in small...very small segments.

Narad #74 said:
"(I should have said “has a live tracker.” We’ll see if anything ever comes down.)"

I thought you said, "has a hive tracker" and that we were back to talking about our Reptilian Overlords! How are the hatchlings these days?

By Melissa G (not verified) on 21 Feb 2013 #permalink

WRT woo-type products being sold at CVS, Walgreens, etc. - Those should be locked up in a glass case next to the perfume, which is just about as away from the pharmacy (in most stores) as you can get.

IIRC, "nouvelle vague" = new wave. Big Burza's dealing la merde ancienne, aka same $-- t, different day.

Thank you for those clarifications. I after he told me about it (making it out to be Pharma conspiracy), I did a bit of online research bud didn't find much that didn't seem biased towards natural stuff. I can understand the possibility of it being banned from sale in some areas if it's a declared environmental weed, but I'm in Australia so I wouldn't know. I'm sure my brother has his own Aloe vera plant, so do I, but it's really just ornamental.

Of course it is necessary to regulate, control and perhaps nationalize Big Pharma, because it concerns our health and that it what they are least interested in being multinationals. Expansing their profit for stakeholders is nowadays their main goal and do not believe all other small talk.

I suppose vitamins are made by multinationals as well.

Of course it is necessary to regulate, control and perhaps nationalize Big Pharma,

"Big Pharma" is already very highly regulated, although I agree the FDA budget needs to be greatly increased and it the FDA should be given the legal authority to regulate the natural product and supplement industry as well. I'm not sure what you mean by 'control' it. As for nationalizing it, some industries are good candidates for nationalization: (utilities, common infrastructure, etc.) but drug development doesn't really fit these models, and if we look at the historical record private/commercial drug companies have been far more effective at successfully bringing new and innovative drugs to market than have been nationalized/government run drug development agencies.
Free market, competitive systems are good at rewarding risk, after all, and drug development is about as risky an enterprise as there is. ( I for one can't think of any other industry that expends as large a proportion of its sales revenue on research and development (~ 18% as of 2004) while simultaneously expecting 90% of the products under development to fail to reach the market and generate any return on investment.)

.

“Over dramatic, slimy, creepy, self serving...

I never thought FOR A SINGLE SECOND that Chris was talking about reptilian overlords.

By herr doktor bimler (not verified) on 22 Feb 2013 #permalink

herr doktor bimler - I understand the preferred term is "reptiloid overlords".

By Mephistopheles… (not verified) on 22 Feb 2013 #permalink

JGC@89
Have to totally disagree about the need for more vitamin regulation.

I watch other peoples' cancer treatments that have lots of regulation. They seem to have continuing shortages of less than wildly expensive treatments. Even an old, cheapo vitamin like leucovorin is obscenely marked up over 500x with FDA approval, and still suffers shortages.

On the supplement market, GMP combined with the need for a good reputation seems to have established large companies that serve reasonable quality and prices at low cost. Global generics and "supplements" can totally displace the expensive stuff. Too bad "global" doesn't always include US availability or low prices in the US, thanks to FDA protectionism.

prn - if you read Consumer Reports you'll know that the perception of reasonable quality products in the supplement market is misplaced. The actual contents are often seriously different from what's stated on the label.

By Mephistopheles… (not verified) on 23 Feb 2013 #permalink

hdk:

I never thought FOR A SINGLE SECOND that Chris was talking about reptilian overlords.

Except reptiles are often not slimy. Their skin is often smooth, soft and dry. That was my impression when handling a snake, and then as a kid playing with blue belly lizards we found in the playground in Central California (I have no idea what the official name was).

Now, conflating Wakefield and that movie to an actual slimy creature like slugs, would be an insult to slugs.

baravelli: Aloe vera is not illegal in the US however there may be situations where it is declared an invasive species and local laws prohibit planting.

I can't imagine where it'd be declared an invasive species, since it's a desert plant, and a fairly finicky one at that.

By Politicalguineapig (not verified) on 23 Feb 2013 #permalink

I have killed many an Aloe vera, myself. I have a brown thumb when it comes to succulents and air plants. Give me a spider plant, a peace lily, or a philodendron any ol' day. ...Actually, don't give me any. Three house plants is the absolute maximum I can keep alive at any given time.

And, absolutely we need to regulate the content of ALL vitamins AND drugs! Remember the recent news stories about the tainted children's OTC analgesics, and the one wherein the Chinese supplements studied contained dangerous levels of heavy metals? It's ridiculous to think we don't need to check and double-check EVERYTHING that we consume as a drug-- and vitamins and supplements ARE drugs, make no mistake, no matter what DSHEA would have us swallow.

By Melissa G (not verified) on 23 Feb 2013 #permalink

Aloe vera is not illegal in the US however there may be situations where it is declared an invasive species and local laws prohibit planting.

There are a couple of possible explanations for the circulation of this notion. One is that the FDA pulled OTC laxatives based on aloe vera sap back in 2002. The other is that there was a parody about the Supreme Court banning aloe vera that circulated several years back, which some people apparently took rather credulously. Could be a game of Telephone.

OH RIGHT-- was that on the Onion, Narad? It's so sad how many people see Onion articles and think they're serious.

By Melissa G (not verified) on 23 Feb 2013 #permalink

OH RIGHT– was that on the Onion, Narad?

Not sure where the parody originally appeared. It does exist here, but I think it dates back further.

Good work Narad!
By the way, I wouldn't underestimate the invasive potential of desert plants. Some North American cacti are a big problem in Australia, and Aloe has become naturalised. I can't see how you could kill one, unless the pot holds too much water and there's not enough sun.

I can’t see how you could kill one

KILL IT WITH FIRE.

By herr doktor bimler (not verified) on 24 Feb 2013 #permalink

Nuke the entire site from orbit. It's the only way to be sure.

@Chris - Wakefield is a hagfish. They make slugs seen warm and fuzzy in comparison.

Snakes and lizards feel lovely, especially if they've been basking. As kids me and elburtoBro holidayed in the South of France (Languedoc-Roussillon region) a few times. We used to spend hours catching and observing various lizards and frogs, they were everywhere. It was great fun.

We always used to release them unharmed where we'd found them, although we may once have put frogs through the open car window of the spiteful camp director. She was racist, and had upset one of our new holiday playmates, so she got frogged.. Yeah, even at the age of ten I was crusading for the underdogs!

The only lizards I would not wish to stroke are Komodo Dragons. Wouldn't mind sending Andy and Carmen to "evaluate" them for fictitious gut disorders!

Wakefield is a hagfish
But hagfish can tie themselves into knots to escape capture...
OK point taken.

By herr doktor bimler (not verified) on 26 Feb 2013 #permalink

"My GOD ....! Listen to yourselves (meaning read what all of you are writing) " You all sound like a bunch of Junior High girls in the restroom between periods."
Have any one of you ever even thought for a moment, just one moment, that one day when a human being actually does find a very simple, painless, non-invasive cure for cancer, that that person will be able to help those with cancer? Let me tell you "The FDA, USDA, all of the Pharmaceutical creeps(Giants is such a glossy term for such greedy bacteria) they will round - up all they're corporate lawyers and tear that pour soul to death. But not before legally obtaining every facet of information needed to steal that treatment from its creator to crush and destroy that useful cancer killer and for what? So they can continue to sell there half-working or non-working treatments at the exorbitant fees and cost to those who suffer. Many scientists have suffered for years before being exonerated all because of the quacks and lunatics who think they know everything..... It's a small page but look at this Web site( http://amasci.com/weird/vindac.html ) You all will be surprised at how things really were for those who worked hard.

By Tom Hickey (not verified) on 23 Mar 2013 #permalink

@Tom Hickey

Yet another comment that is easily replied to just by actually reading the posts and comments on this blog. Did you bother to do that, or did you just dive right in thinking you had something original to say?

#107 Actually, there are ways to prevent some types of cancer, which is even better than curing it. One of them is a vaccine called Gardasil, and Big Pharma seems to be pretty happy to sell that.

I'm pretty sure they'd be happy to produce what Burzynski created by the crateload if he would just please publish the results of his "studies" so they can be sure it works properly.

It’s a small page but look at this Web site

That list of ignored scientists ends with Fritz Zwicky, which makes it straight-out Narad bait.

By herr doktor bimler (not verified) on 23 Mar 2013 #permalink

That list of ignored scientists ends with Fritz Zwicky, which makes it straight-out Narad bait.

It ends with George Zweig, good sir.

You all sound like a bunch of Junior High girls in the restroom between periods.

OK, I'll just pretend I didn't check what the average age for menarche is.

@Tom Hickey
Are you aware of how much money is spent in the US on researching alternative medicine, including potential cancer treatments? The NIH's National Center for Complementary and Alternative Medicine and their Office of Cancer Complementary and Alternative Medicine have a collective annual budget of a quarter of a billion dollars.

Does this really look like an attempt to suppress effective treatments by "the quacks and lunatics who think they know everything"?

By Krebiozen (not verified) on 24 Mar 2013 #permalink

@Narad

He's not talking about menarche. He's talking about the time in between classes that girls would hang out in the bathroom(s) and fix their hair, etc.

all of the Pharmaceutical creeps(Giants is such a glossy term for such greedy bacteria)

As a microbiologist, I resent that. Nothing wrong with bacteria. We all have more bacteria in our colon than neurons in our brain.
Some of us, it appears, even more so.

By Heliantus (not verified) on 24 Mar 2013 #permalink

@ Heliantus,

More bacteria than neurons? shrug, can we MRI those bacteria?

Alain (MRI

Alain (MRI specialist)