Following up some links from the coverage of the Burzynski matter. From David Colquhoun, an item from the National Council Against Health Fraud newsletter March/April 1997:
The trial of Stanislaw Burzynski for cancer fraud ended in a hung jury (6-6)
on March 4. CBS’s 48 Hours‘ interviews of jurors told the tale as to why
they couldn’t agree. Clearly, the jurors agreed that Burzynski was guilty as
charged of violating court orders not to distribute his unapproved
“Antineoplastons” in interstate commerce, but the fact that some desperate
cancer patients believed Burzynski’s remedy was keeping them alive (or, at
least, was keeping their hope for recovery alive) made the case too emotional a matter for them to convict him of his crimes. One juror who was interviewed admitted that she had disregarded the judge’s instructions to ignore such issues.The CBS reporter confronted Burzynski with the calculation that, based upon his fee system and patient load, his annual income would be $20 million. Burzynski concurred but said that not all of his patients paid their bills. Burzynski claims that his medicine is quite costly to produce. Cancer
researcher and NCAHF board member, Saul Green, PhD, pointed to prices in a catalog showing that a bottle of medicine cost Burzynski 80 cents.The Burzynski trial was stereotypical. Supporters paraded with placards
extolling the doctor and his cure, while the media reporter focused on a few
individuals who apparently do have cancer but whose survival is no more than one would expect from any group of patients. The prosecution is shown as dealing with technical points of law, while the doctor and his patients are “real people.”It is classical deception by illusion. Viewers have no way of knowing if the
demonstrators are really cancer patients. A study of a laetrile rally in 1978
found having cancer did not predict participation in an anti-FDA rally; rather being against fluoridation, disliking MDs, liking chiropractors, and shopping in health food stores were the determinants. Viewers have no way of evaluating the real medical conditions of the patients shown. Most are not even aware of just how normal a cancer patient can look and feel even in advanced stages of the disease. And, no one knows the proportion of failures among the large number of patients who Burzynski has treated over the two decades he has promoted his remedy.Trial by placard waving emotion is a form of mob rule. More and more it
seems like society is letting emotion overrule the sound judgment of carefully considered law.
And also via DC, Dorothy Bishop on “The weird world of US ethics regulation” –
I had assumed that this trial hadn’t undergone ethical scrutiny, because I could not see how any committee could agree that it was ethical to charge someone enormous sums of money to take part in a research
project in which there was no guarantee of benefit. I suspect that many people would pay up if they felt they’d exhausted all other options. But this doesn’t mean it’s right.I was surprised, then, to discover that the Burzynski trial had undergone review by an Institutional Review Board (IRB – the US term for an ethics committee). A letter describing the FDA’s review of the relevant IRB is available on the web. It concludes that “the IRB did not adhere to the applicable statutory requirements and FDA regulations governing the protection of human subjects.” There’s a detailed exposition of the failings of the Burzynski Institute IRB, but no mention of fees charged to patients. So I followed a few more links and came to a US government site that described regulatory guidelines for ethics committees, which had a specific section on Charging for Investigational Products. It seems the practice of passing on research costs to research participants is allowed in the US system.
Well don’t I feel proud of the US system.
I… don’t get it. Isn’t the most emotionally appealing solution to stop the fraudulent fucker from drumming up false hope in more people?!
Oh, barf. More evidence that law is powerless to make society any better than the members thereof are.
Too damn right. “The sound judgment of carefully considered” anything, in fact.
Dr. B saved my mom (who was given up on by our standard oncologist and told it’s time for hospice). My mother is not alone. We met plenty of successful follow-up patients at the clinic who also had late stage diagnosis. Anecdote or not, I know one thing. Our family will celebrate together again this holiday season and it was made possible by this one brave man. And that’s ALL that matters to us. He was our last hope and is now forever a hero in our house and in our community.
See, ethical doctors have this huge disadvantage against cranks. There are always patients who do much better than expected, but doctors with ethics know they can’t predict who those lucky individuals will be, and they know just how few the lucky few are. Those doctors don’t get to sell false hope and fake treatments to all and sundry and then bolster their reputation with the testimony of those who just happened to survive despite it. But all cancer docs can tell you about the patients who beat the odds.
Also, real heroes don’t charge people hundreds of thousands of dollars just to borrow unearned credit for their fake treatments. But given how it’s so hard for people to let go of the idea that they paid so much for nothing but a snazzy sales pitch, it sure makes for some ardent supporters.
Errr, bad editing. That should be: “But given how it’s so hard for people to accept the idea that they paid so much…”
You’re saying two things here:
a) Our family will celebrate together again this holiday season and…
b) …it was made possible by this one brave man
Now, if your mother is better, then that’s great. Congratulations. What I would question is why you feel the need to connect it back to the quack in question.
I wonder, did you try any other alternative treatments for your mother? I ask because there’s a common pattern in these cases; people try every method they can get their hands on and when they spontaneously get better, they credit whatever quackery they tried last.
Your story is indeed anecdotal. As such, it is unconvincing.
I can’t help but notice that it’s also a blatant attempt at emotional manipulation. Whether deliberately or not, you’re capitalizing on the empathy we might feel for your mother to advance an unsound argument.
I know one thing, too. Similar anecdotes fall apart when you make simple requests such as, who was the medical doctor who ‘gave up?’ How was the cancer confirmed? How was the stage of cancer confirmed? Who were these other patients who also had miraculous recoveries? How was there recovery documented?
*gag*
I literally was almost sick with rage at the callousness of this woman and her indifference to what was happening in front of her.
Actually, no you don’t. That’s the whole point of it being an anecdote. You claim or you prefer to believe, but by any sensible definition of “know”, you don’t.
@Glen
Cross posted from iLIVE
http://www.timeslive.co.za/ilive/2011/12/07/anecdote
Anecdote
You were desperate for a cure
At first you weren’t sure
So you got the testimonials
You didn’t see the burials
The people you met were honest
And their words were so earnest
Who arranged the meeting?
Who set out the seating?
Count the hits not the misses
Self-deceived we bear witness
We all do it you know
Get gulled by the show
Doubts we try to mask
Questions are hard to ask
Who arranged the meeting?
Who set out the seating?
Knowing this we still fall
For the trick one and all
When there is not antidote
We grasp the anecdote
And trust what we hear
Skepticism lost to fear
Who arranged the meeting?
Who set out the seating?
How selfish. You presume because it seems this worked for you it works and thus would subject others to what may be a fraudulent treatment. Rather than look into it and demand the truth you demand others potentially be sacrificed on the alter for your good warm fuzzy.