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You are here: MacNN Forums > Community > MacNN Lounge > Political/War Lounge > Is this the biggest medical cover up/scandal in 30 years?

Is this the biggest medical cover up/scandal in 30 years? (Page 5)
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Waragainstsleep
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Nov 25, 2011, 12:30 PM
 
The evidence of nefarious snake oil selling continues to pile up:

The Burzynski Clinic Threatens My Family. | The Quackometer

It seems the UK skeptics network has recently picked up on this guy since one of our well-liked comedians has been drafted to raise money for a potential patient.
The guy makes me sick. If his clinic was near me I'd be tempted to burn it down.
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olePigeon
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Nov 25, 2011, 05:34 PM
 
Originally Posted by Athens View Post
And whats wrong with this picture is if the treatment is 100% useless the FDA is allowing people to be suckered out of money and die.
The FDA isn't allowing anything, they simply have no jurisdiction. Welcome to the world of alternative medicine: make any claim you want, take no responsibility.
"…I contend that we are both atheists. I just believe in one fewer god than
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Athens
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Nov 26, 2011, 05:31 AM
 
Originally Posted by olePigeon View Post
The FDA isn't allowing anything, they simply have no jurisdiction. Welcome to the world of alternative medicine: make any claim you want, take no responsibility.
Does the word FDA Approved.... mean anything to you?
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Waragainstsleep
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Nov 26, 2011, 10:08 AM
 
If I have it right, to get a drug approved by the FDA, you have to first prove it isn't dangerous or harmful, then you can move on to proving it works.

It seems that once you have proved your treatment is safe (enough), you are then free to keep on proving it safe indefinitely. Burzynski got approval for phase 2 trials by proving that antineoplastons don't hurt people and has been abusing those trials ever since with no intention of ever running 'real' trials to actually prove efficacy.

The FDA was quite right to approve the initial trials but it seems they need to close this loophole that Burzynski has found. He is simply starching the definition of FDA approval. He uses language very cleverly to achieve his con. You'll notice he only ever claims to treat cancer, not cure it. He lets other people make that claim so he cannot be charged with fraud.
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Thorzdad
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Nov 28, 2011, 02:21 PM
 
     
Athens
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Nov 28, 2011, 03:14 PM
 
I am so going to put a few blogs up to see if I can get some special treatment from his lawyers.

So according to the lawyer phase 3 trials are approved, this should be interesting. I wonder if he is actually running these trials or just sitting on the approval for what would be another few decades.
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Waragainstsleep
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Nov 28, 2011, 08:41 PM
 
My understanding is that phase 2 is to prove the treatment is not harmful to people. The treatment has been approved for phase 3 trials for a long time.

It seems his over-zealous PR department might have gone too far. The clinic is now suffering the consequences of the Streisand Effect after trying to bully bloggers the world over. One of them was a 17 year old kid in the UK. Could they even enforce any civil penalties for libel awarded in the states without the defendant travelling voluntarily to the US? Seems doubtful to me.

Going from memory it seems like the state of Texas is going to try to strip him of his medical license in April next year too. Lets hope the negative PR can keep building until then and they can pull the rug out from under his entire business. Sadly I suspect he'd just get some other amoral puppet with a medical degree to take his place and keep the cash rolling in. Striking him off won't be enough, they need to close the loophole. Medical trials should not be patient funded.
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Athens
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Nov 28, 2011, 09:02 PM
 
from what I read the phase 3 trials have been going on for a couple years and is due to be complete in 2016. Its one of the reasons I was annoyed the best any one could show was stuff from over a decade ago.
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Waragainstsleep
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Nov 29, 2011, 08:03 PM
 
Where did you see that phase 3s had begun?
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olePigeon
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Nov 29, 2011, 08:12 PM
 
Lol. He's now on Slashdot. Which one of you posted it?
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you do. When you understand why you dismiss all the other possible gods,
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Waragainstsleep
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Nov 30, 2011, 04:38 PM
 
Brilliant!
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Waragainstsleep
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Dec 13, 2011, 01:26 PM
 
I have plenty of more important things to do, if only I could bring myself to do them....
     
Athens
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Dec 14, 2011, 03:41 PM
 
As much as I hate to admit it, there is a modicum of science here. It's just that, in Dr. Burzysnki's hands, unfortunately it's incredibly sloppy science, Trials are not designed so that they can ever answer the question of whether the real drug, namely sodium phenylbutyrate, is effective, either alone in combination, against cancer, and, if it is, against which cancers. Rather, they appear custom-designed so that Dr. Burzynski can keep administering antineoplastons (which, remember, are nothing more than the metabolic breakdown products of sodium phenylbutyrate) to patients. It's also incredibly unethical science in that Dr. Burzynski is requiring patients to pay huge amounts of money out-of-pocket for unvalidated combinations of targeted therapies thrown together with (these days, at least) sodium phenylbutyrate and sold as "personalized gene-targeted cancer therapy." As for his clinical trials, he has been warned by the FDA about lax Institutional Review Board procedures that fail to protect human subjects, fail to guarantee adequate informed consent, do not adequately monitor studies with ongoing reviews, and fail to report conflicts of interest of IRB members. In other words, not only does Dr. Burzynski do "personalized targeted therapy" badly; he does clinical trials badly as well.
As I said before, his concept is valid, but he is obviously more interested in profit vs real science and is performing bad trials.

So the main thing that Burzynski stands to gain from continuing the way he is continuing is uninformed patients who have (or, like some patients who manage to raise a lot of money through medical fund raisers, can get) lots of money. These are patients who are already prone to be attracted to woo and who have come to think from reading various websites and other sources of information that antineoplastons are somehow something magical and amazing. Of course, they don't realize it's nothing more than phenylbutyrate and, more importantly, that, if they have one of the cancers for which there is evidence of efficacy, they could ask their oncologist to prescribe the drug off-label, although their insurance may not pay for it. They also don't appear to be informed that there is a significant body of published evidence about the safety and efficacy of phenylbutyrate and that the way Dr. Burzynski uses its metabolites A-10 and AS-2.1 often far exceeds what one might estimate to be the MTD.
The best part of the article

What Burzynski is really doing
It appears that during his urine and blood purification process so many decades ago, Burzynski stumbled on known compounds, PA and PAG, and has been using them to treat all sorts of cancers at extremely high doses based on weak evidence of clinical efficacy (probably brain tumours are the only real indication where it might be useful). Despite the persistent lack of evidence that these compounds have significant anticancer activity in humans, he continues to use and promote them at his clinic, charging patients through the nose to join his clinical trials rather than joining in a wider research effort test the drug in the right way. Indeed, the Burzynski website is still putting out this line: "Antineoplastons (ANP) are peptides and amino acid derivatives, discovered by Dr. S. Burzynski, M.D., Ph.D. in 1967." As the literature shows, however, what is probably one active metabolite (phenylacetate) was already being researched in the 1950s, and the other probable active metabolite, phenylacetylglutamine, was investigated in the urine of cancer patients in 1958. Burzynski didn't "discover" these two chemicals. All he did was to purify them from urine, then throw them them at patients in extremely high doses. This he did for decades until, sometime in the last several years, he apparently discovered that these chemicals are metabolites of sodium phenylbutyrate; so he switched to that. Then, like the "brave maverick doctor" that he thinks himself to be, he decided that the way to sell his antineoplastons and phenylbutyrate was to "rebrand" them as part of his "personalized gene-targeted cancer therapy."
Unfortunately, what we have here is a case of crank magnetism, and the people who pay the price are the desperate patients enticed to spend tens of thousands of dollars for a combination of chemotherapy, thrown-together targeted therapies, and an orphan drug sold as something unique and brilliant.

FDA should shut him down.
Blandine Bureau 1940 - 2011
Missed 2012 by 3 days, RIP Grandma :-(
     
 
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