And credulous newspapers are helping that quack. The latest case is a little girl in Ireland with a disfiguring and deadly rhabdomyosarcoma who is trying to raise money to get the useless and totally fraudulent Burzynski antineoplaston treatment … and this article makes the good point that newspapers are helping to defraud sick people. Both the Irish Times and the Irish Independent reported on the poor girl's struggle, and they called the fake treatment "pioneering" or "advanced".
Each uncritical article published about clinics like the Burzynski clinic amounts to free advertising for a treatment which is at best, as yet unproven, and at worst, much more damaging than it is claimed. Though articles about individual patients and families must tread a careful line between criticism of the clinic and the feelings of those involved, the current standard of reporting on these clinics ultimately helps no one. It’s time to stop hiding the controversy, and sweeping it under the carpet. Patients deserve information, not infomercials.
It's a shame. If you google Burzynski, the first page is full of bullshit promoting the fake treatment — one thing his clinic is good at is SEO — but still, there's quackwatch and Orac and Larry Moran buried in the muddle, pointing out that this is flaming quackery. You'd think a reasonably intelligent journalist would notice that there's some controversy here. And even better, you'd expect a reasonably intelligent journalist to pick up a phone, call an oncologist, and ask what they thought of antineoplaston therapy.
But they don't.
And Burzynski gets free advertising for his $200,000 urine treatments.
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If this doctor is a quack, why would the USA's Food and Drug Administration, the same administration that approves all cancer drugs for market, allow Antineoplastons to enter randomized phase 3 clinical trials for childhood brainstem glioma? How could the FDA say "yes, this treatment shows enough safety and efficacy to enter phase 3 randomized trials" if the treatment is a total scam? It isn't like the FDA is on Burzynski's side or anything, they hate him.
Here is an email fro the FDA to the clinic stating exactly this:
https://www.burzynskimovie.com/images/stories/Understanding/EmailFromFD…
Roger23, I'm the author of the article quoted. There are many problems with using the Burzynski Movie as a source of information, and this was extensively discussed on many blogs, including one by Orac on Scienceblogs (http://scienceblogs.com/insolence/2011/11/29/burzynski-the-movie-subtle…). I suggest that you give it a read, as it will highlight the fact that the movie has little credibility.
A promotional video about the clinic is unlikely to be anything but, well, promotional, and so shouldn't be considered reliable or unbiased. Moreover, there is often an attempt to point out incidents in the past where the FDA (or big pharmaceutical companies) have behaved badly, and while it is correct that the FDA, pharmaceutical companies, and indeed most corporate entities haven't got a squeaky clean rap-sheet, none of these incidents negate the need to provide evidence for a treatment.
In short, just because someone says the FDA has misbehaved (or just because they have misbehaved in the past) doesn't mean you can skirt the regulations with regard to treatments. Burzynski is making a truth claim - that he can cure cancers which are usually fatal. The onus is on him to provide evidence, and if he had completed as many trials as his movie and website said he had, then he would have ample clinical data to back up his claims. In practice, most of his trials are all but abandoned (and most of the patients claiming they are being treated there don't seem to fit into any of the trials listed on the govt. clinical trials website).
It's tempting to take the movie at face value, but I want you to ask yourself the following question, and do your best to answer honestly: Is a worldwide coverup, involving virtually every medical professional and every medicine certify board, *really* more likely than the treatment (and the ethics of the clinic) being suspect?
I'm not sure this is a 'fake' treatment as such, but it is certainly not a very good one and has never been proven effective, despite having been in use by Burzynski for over 35 years.
I think what is happening here is that the clinic are misleading patients, telling them what they want to hear (I have discussed this on my own blog here: http://josephinejones.wordpress.com/2012/05/31/the-burzynski-clinic-mis…). The newspapers then jump on this as a human interest story, also believing what they want to believe.
It isn't always the case that they are not aware of the controversy: they are actively choosing to sweep it under the carpet. I have been in touch with several UK newspaper editors over their coverage of Burzynski and have been left feeling like I've been banging my head against the wall. I have also been in touch with the Press Complaints Commission. Again, a total waste of time. My local paper, the Warrington Guardian, went so far as to print (the first 4 sentences of) one of my emails, yet have continued to print biased, irresponsible articles in support of a local woman's fundraising campaign.
It is often argued, including by editors, that faced with such a difficult situation, what can you do? My response to this is that if editors really care about patients, they must pull their heads out of the sand. I went into this in a bit more depth here: http://josephinejones.wordpress.com/2012/04/29/if-the-media-care-about-… where, like Jennifer Keane (@zenbuffy), I point out that yes, patient choice is important - but it should be informed choice. And it seems clear to me that the Burzynski Clinic are not properly informing patient, who in turn are not properly informing journalists.
Yes - such pieces are essentially free advertising. But if they were actual advertising, they would be in breach of advertising guidelines and even illegal under the Cancer Act (in the case of the UK articles).
rhabdomyosarcoma is the correct spelling.
I would not exactly put Orac into the category of an expert in quackery. he still thinks chemo and radiation cures cancer when in fact it helps to spread it.
This practice in question may be quackery, but most journalists will embrace alternatives to big pharma scams when given the opportunity. Colloidal silver is banned in europe, but not on America and it kills over 300 known viruses, bacteria, and fungi with relatively little or no side effects. there is the left wingery argument about it turning the skin blue and that is true if you guzzle it like booze for years, but outside of that, it is is safer tnan most prescription drugs.
besides even if it is banned here the people who use it already know how to make it in case of such an unconstitutional and unnecessary police state ban. It can be made at home and herbal supplments can be gorwn and made at home as well. Vitamin D can be obtain by laying in the sun 10 minutes a day. Try banning that!
When it comes to police states, free men will always think up a way around their petty insignificant childish and selfish laws and schemes. Freedom will prevail and tyranny will fall.
Stiil, i wouldn;t refer to Orac or any of his minions like Chris who claims to have no chromosomes or narad who always argues fake science over real science or even NJ who is so overdosed on canadian sodium fluoride that he has lost the ability to think correctly. Those people over there know less about alternative medicien than a dead possum in a garlic garden.
http://robhood.us/weblog.php
1.I would not exactly put Orac into the category of an expert in quackery. he still thinks chemo and radiation cures cancer when in fact it helps to spread it.
This practice in question may be quackery, but most journalists will embrace alternatives to big pharma scams when given the opportunity. Colloidal silver is banned in Europe, but not on America and it kills over 300 known viruses, bacteria, and fungi with relatively little or no side effects. there is the left wingery argument about it turning the skin blue and that is true if you guzzle it like booze for years, but outside of that, it is safer than most prescription drugs.
Besides even if it is banned here the people who use it already know how to make it in case of such an unconstitutional and unnecessary police state ban. It can be made at home and herbal supplments can be gorwn and made at home as well. Vitamin D can be obtained by laying in the sun 10 minutes a day. Try banning that!
When it comes to police states, free men will always think up a way around their petty insignificant childish and selfish laws and schemes. Freedom will prevail and tyranny will fall.
Still, I wouldn’t refer to Orac or any of his minions like Chris who claims to have no chromosomes or narad who always argues fake science over real science or even NJ who is so overdosed on canadian sodium fluoride that he has lost the ability to think correctly. Those people over there know less about alternative medicien than a dead possum in a garlic garden.
PZ is still bilking commentators, censoring posts, and fornicating polls. Now again, mr productivity:
1.I would not exactly put Orac into the category of an expert in quackery. he still thinks chemo and radiation cures cancer when in fact it helps to spread it.
This practice in question may be quackery, but most journalists will embrace alternatives to big pharma scams when given the opportunity. Colloidal silver is banned in Europe, but not on America and it kills over 300 known viruses, bacteria, and fungi with relatively little or no side effects. there is the left wingery argument about it turning the skin blue and that is true if you guzzle it like booze for years, but outside of that, it is safer than most prescription drugs.
Besides even if it is banned here the people who use it already know how to make it in case of such an unconstitutional and unnecessary police state ban. It can be made at home and herbal supplments can be gorwn and made at home as well. Vitamin D can be obtained by laying in the sun 10 minutes a day. Try banning that!
When it comes to police states, free men will always think up a way around their petty insignificant childish and selfish laws and schemes. Freedom will prevail and tyranny will fall.
Still, I wouldn’t refer to Orac or any of his minions like Chris who claims to have no chromosomes or narad who always argues fake science over real science or even NJ who is so overdosed on canadian sodium fluoride that he has lost the ability to think correctly. Those people over there know less about alternative medicien than a dead possum in a garlic garden.
A similar thing happened last year, with a young girl called Luna Petagine, there was a lot of support from celebrities to raise money for her "treatment" looking to raise some crazy amount of money; £20,000 "the cost to meet the Doctor for assessment", and the treatment is £50,000 a year.
It was recorded as part of a BBC program earlier this year called "Great Ormond Street" a children's Hospital here in the UK, it was really hard to watch. The local UK Doctor was clearly not happy about the parent's plans to try out Burzynski, but couldn't really call it out as BS in his professional role. Just make sure the parents know that there was no evidence that the treatment is at all effective and he has no idea of the possible side effects.
Near the end of the episode the family is back home, and the treatment having failed, at some point Luna's sodium levels sky-rocketed and she went into a coma that she was lucky to recover from. The look on the UK consultant's face when he heard the numbers was a mix of disbelief and horror, it was really difficult to watch.
After the show I had a look at the website for Luna Petagine, and the diary entries at the time, oh god:
"We had an appointment at Burzynski clinic this morning to tell them our plans. Dr Burzynski explained that yes the tumour has enlarged but this is due to the tumour breakdown because of the treatment. The fact is it is working. The problem is there is very little room for more breakdown/swelling. We have made the decision to continue with the treament and hope other other medications will control the swelling. Luna has been so happy today and her facial palsy seems to of improved. I have cried so much over these last few days but im not ready to give in. We will fight this disease and we will win. The treatment works we just have to pray we have enough time.
Tommorow we fly home and and will continue treatment at home under our local consultant. "
She's still alive but the recent updates seem to suggest that the cancer has progressed so much that the family has come to terms with fact that she is beyond treatment. But it's just all too sad. :(
May i merely say what a comfort to get somebody that really is aware just what they are speaking about online. You actually learn how to bring an issue in order to mild and make it crucial. Lots more people should check this out along with understand this side in the history. We cannot feel youre not more popular because you certainly possess the present.
Let me first say that I'm not a scientist. That being said, and possibly for the worse, you claim that you are. I am not a Burzynski cheerleader but I am and have been in the healthcare arena for > 20 years.
My disagreement is simply that you assert the fallacy that the treatment is at best unproven.
I would, being arguably reasonably intelligent assert that the FDA has (in this instant case) destroyed any framework in which to provide for the evidence, positive or negative, of anything he does. Perhaps at best it may work, and as yet it is to be proven that it does a damn thing.
In researching this, I went beyond quackwatch and went to the Texas court summations, where it was proven that the .gov attempted to steal this alleged 'fraudulent treatment'.
I would further suggest that oncologists, as a source of truth, have a financial interest to uphold, and thus there may be a conflict of interest.
Why so angry?
I cannot believe this guy is still operating. I tried to stop him from treating my pediatric oncology patients in 1985 when I was practicing in another state. The AG in Texas said they couldn't do anything because he wasn't crossing state lines with his hoax. BTW, all patients treated did not survive.
BJC,
I would never expected ALL of anyone's patients to survive carcinoma. My only issue was from a false premise/assertion. Again, I am not his apologist nor a proponent.
That being said, SOME of his patients did survive after failing mainstream therapy, and this was somewhat intriguing.
I agree with you that he should have not treated your patients.
From the looks of it some people with very difficult cancers were successfully treated by the Burzynski regimen.
When he studied medicine he noticed that some patients had this deficiency. Now it sounds like they prescribe regular chemo and the concoction he put together.
Until someone can show that patients he says went into complete remission actually did not; some of these criticisms seem imbalanced.
This commenter BJC, well that is just absurd. If they were your pediatric oncology patients -- well how many are you talking about. Are you even allowed to say what you are saying? Was it your decisions or their parents decisions. Do you think your efforts would have saved their lived but his could not?
If modern medicine can not treat a disease and you want a patient so you can bill them, well at this rate given some of Burzynski's successes it made sense to go with less toxic attempts.
Again if someone can show that his claims about patient survival are untrue, fine. He does not say he can successfully treat everyone. He says for certain Cancers that were 90% incurable, his treatment was about to successfully help 30% more. Or something like this.
After reviewing the available information it seems.... it seems that a few people who would have otherwise died with conventional treatment did respond well to his treatment.
The point is if... if some people would benefit then it makes sense to include that medical knowledge. If Burzynski's clinic is cheating patients or lying then it should be closed.
It is absurd to read that people spend 2,300 on medicine there that should have cost 170 dollars, though it's just hard to tell. Burzynski's treatment, I thought was supposed to be for brain cancers, no clue what he'd be doing treating other Cancers... That reference from the burzynskiscam website was for Pancreatic Cancer treatment.
The FDA wants everything to work randomly. It's just idiotic. if you have 100 cases and 5 of those people have a certain condition, a certain DNA and those 5 would actually benefit from a certain treatment; then it would make sense to know.... this treatment works for these specific cases.
Yet people here are saying no, his medicine is really something else, used to treat other conditions, no he just modified it a little.... well it doesn't sound like some very experienced comments because that is something that occurs in the advancement of medicine.
It'd just be better, if you're going to write some two paragraph blog trashing someone that you bring up some real facts. If you think he's bilking dying children, get interviews from families who you claim he has bilked, figure out what is going on.
If indeed he is finding a greater success rate than other facilities, well then it is just abhorrent to criticize his practice.
I just do not know. These patient's families who did survive, some credit him, when others told them there was no hope.
We are just content with a very primitive state currently. Where some people are like, no... no... those dying children's families' money are ours no one elses, regardless of if he could actually treat them.
That's what is ridiculous. That the priority is they know many of these patients will die and some would fight so hard not for the people who could be treated, they want the business because they can profit on those who can not be treated.
It's Texas also, they need to put down some guidelines, you should not be able to sell medicine for 2,300 if it really costs 200. You can not just open up a fast food style 'we treat every cancer,' clinic...
It'd just be nice if instead of all of this complaining people would pick up and actually find the successful treatments. Not bemoan the fact that people are desperate and are turning to Byrzinski who, so far I've not seen it disproven that he has had some successes in certain patients...
If someone could show, oh well that case, it was totally misdiagnosed that was really BENIGN ......... you could have given them placebo and they'd have been fine.. well that'd be one thing, however I've simply not seen that done...
People, no evidence is no evidence. It doesn't matter whether he had records stolen or not, he still has no presented evidence that his treatment works, he seems not to have any interest in doing so, and he's charging people a lot of money for this nonsense. He's been doing this for decades, and he continues to do it, so the studies could have been re-run, if his records were, in fact "stolen". He's not paying for them anyway (his patients are) so why wouldn't he? News flash: it's because he's a fraud! He doesn't help, he bilks. Stop with the conspiracy theories and the anecdotal fairy tales - there is no evidence that his drugs work. Let me put this another way: we have as much evidence that apples cure cancer as we do that Burzynski's urine extracts cure cancer. You don't have to defend this guy, just because you want his opponents to be wrong. Look at the evidence, paying particular attention to the fact that there isn't any.
So many confused people...
The FDA is not stopping Burzynski from proving that his junk works. That's what HE has been refusing to do for 30 years.
"indy",
It's not everyone else's job to prove that Burzynski's claims are false. He has to do a phase III trial and publish the results to prove that it ISN'T BS.