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November 28, 2011

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I never much liked Barbra Streisand until I discovered the sceptical blogosphere.

Well done, these bullying tactics and dubious medical claims need all the publicity possible.

There are two distinct issues here:

1. The pseudomedicine and quackery of the Burzynski Clinics.
2. Legal threats by Marc Stephens, allegedly a representative of the Clinic, to bloggers (Lewis, Rhys Morgan, and Peter Bowditch most notably)

Josephine Jones is curating a list of all the posts having to do with both issues at

http://josephinejones.wordpress.com/2011/11/25/stanislaw-streisand-and-spartacus/

I'm curating a list of posts having to do (mostly) with the second issue at

http://lizditz.typepad.com/i_speak_of_dreams/2011/11/a-pr-flack-attempts-bullying-ridicule-ensues.html

And for all of you who are confused about the whole thing, Crispian Jago sums it up in 17 easy-to-read panels

http://crispian-jago.blogspot.com/2011/11/skeptic-park-4-featuring-rhys-morgan.html

Off topic, but nice to see you back!!

This whole matter with Burzynski just stinks. Ever if there is nothing wrong with his questionable medical practices, which there is, the way chose to handle criticism by skeptics shows a lot about his character. Instead of hiring an attorney to handle this matter, he hired someone to PRETEND to be an attorney to harass those who criticized him.

Brzynski is doing nothing but profiting from misery by taking large sums of money from dying people for his quack treatments.

You might want to check out my new skeptically themed website/podcast at The Inconvenient Truth.

Just like Dr. Chen said, everyone wants a piece of Burzynski's pie... so sad that so many of you belive what they want you to believe

A piece of his pie? Wouldn't getting that entail benefiting off his work rather than just point out that he's a dangerous quack?

Actually, I'm more curious about the "they" that want us to believe stuff. Who am them anyway - are they us? 'cause I always thought it was us against them.

And - is Supporter athletic?

See the movie before you make your judgment. http://www.burzynskimovie.com/

Easier than watching the movie is reading Orac's critique.
http://scienceblogs.com/insolence/2011/11/burzynski_the_movie_subtle_its_not.php

One brief passage:
"Merola's pledge that the the opening 30 minutes of the movie would "thoroughly establish" that Burzynski has discovered the genetic mechanism that can cure most cancers was clearly not kept. These three testimonials do not constitute convincing evidence that antineoplastons can cure cancer. Given that they are almost certainly the absolute best cases that Burzynski could come up with, I'm forced to wonder what the denominator was. How many patients were treated with antineoplastons and didn't exhibit results even this good? Thousands upon thousands. Meanwhile, interspersed throughout these testimonials are comparisons of Burzynski's results to results of standard therapy that are deceptive in the extreme, given that small, unrandomized groups subject to selection bias are not comparable to larger clinical trials of standard-of-care treatments."

burzynski charges $200K per subject for what he says is a "cure" in what appears to be an endless study of 30+ years

big pharma charged me zip as a subject for two studies and actually cured me in two years while gaining approval (I think) to legally charge the afflicted

holistic alternatives take time to flesh out I guess and the maverick underdogs hawking controversial ideas challenging established dogma need to put bread on the table too

The thing people realize is the sheer numbers that are against chemo and radiation. If his approach has THAT much more success than chemo does, how can you go against it. People are so naiive to think that the pharmeceutical companies are looking out for your best interest when clearly the FDA (which is government controlled) gains to benefit by his treatment failing. OPEN YOUR EYES AND REALIZE THAT THE GOVERNMENT IS A BUNCH OF GREEDY BASTARDS OUT FOR YOUR MONEY. Some of you need to gain knowledge and inform yourselves instead of trusting those in office who love your money.

Um - I don't get it. The government creates our money. If they want it why not just create more and eliminate the middle man?

Anyway, the gist of this argument seems to be "fifty million Frenchmen can't be wrong". Seriously weak :)

but the quack isn't that successful and uses the chemo you deride as part of his "cure"

besides, if it were so efficacious, he would benefit just like Offit

instead he charges marks patients $200K or so and calls it a study because he really can't legally hornswoggle sell to the public

for over 30 years

the first study I was in used approved medicine and would have cost $21,600 for the year if not for public healthcare - these meds have a fifty-fifty record, does the quack?

the second used experimental medicine and was gratis for up to a year and cured me in six months

to recap

quack - $200k/patient for thirty years of evidence free study

big pharma - $21.6k/patient (guvmint tab) with 50% cure rate in year or less with proven approved meds AND totally free experimental unapproved meds (big pharma tab) that cured in six months from a study that took several years but, THIRTY?


who's THE GREEDY BASTARD OUT FOR YOUR MONEY?

take your own advice

The "evil Big Pharma minions all think and act alike" schtick makes me laugh.

They have pots of money taken from the poor and needy and instead of spending it on cheap, worthwhile, functional cures, they spend it on expensive treatments designed to cause the maximum suffering possible with no chance of a cure.

Bu-WAHAHAHAHAHAHAHAHA!

Sorry, couldn't keep that one in any longer.

I often wonder why some equally money-grabbing, avaricious, cash-obsessed company - just one - doesn't provide 100% cure nice, cheap, chemo-free, rad-free, surgery-free treatment in a nice raspberry-flavoured drink, if it really exists.

With their resources, they could fund study after study to prove its efficacy and put all their super-nasty competitors out of business!

Still, I guess they all have to sign the Evil Big Pharma Code of Non-Competitiveness while they're studying at Nasty Med University. There's honour among these evil poisoners that would shame Sir Galahad.

The same way all the oil companies all insist on paying billions to extract oil from the ground rather than spending, say, a couple of million buying the rights to the fabled water-powered-engine design and wiping out their competitors. Instead they spend those millions on trying to cover up the fact that this device even exists. Possibly committing murder to keep it secret.

And they still spend billions exploring, surveying, building rigs and drilling, fractionating, transporting...

Damn fools!

All the comments bad or good about Dr Burzynski. The bottom line is his Treatment should have been given Clinical Trails. This would have stop all this bitching and bullshit. Why is the FDA so against the trails and why did they try to steel his ideas? They are so worried, if what he states is true. I did think anybody would do Chemo again, so where does that leave the millions and millions of dollars invested in those treatment. God help the Pharmaceuticals and the Gov't. Please let all the trails run and will see the truth once and for all. Let the best treatment win. Burzynski way or Chemo.

I also forgot to mention the other clinical trails the FDA will not run. It is called Low Dose Naltrexone and Alpha Lipoic Acid. There has been cures of Pancreatic and Liver Cancers and many other illness have had great benefited by the use of this treatment, such as MS, Parkingson and the list go's on. The reason being there is no great amounts of profits to be made by the Pharmaceuticals as the drug is very cheap and has very little side effects. Once more what is the FDA scared of?
DO THE CLINICAL TRAILS.

He's been at the clinical trials for decades, and still no recorded results aside from sales-friendly testimonials. Real researchers don't take that long to get through all three phases, and yet Burzynski's been stuck in the middle of the process for 30 years or so. Another big problem is that he's biased his results by forcing patients to pay for the privilege to be experimented on. Real researchers try to avoid charging their patients, and they don't promise results, just that they'll try. Also, how would the evil overlords know it's worth "stealing" without results? A lot of Burzynski's Ayn Randian followers sure seem more worried about his profit potential than they are with figuring out if it works or not.

Think about what you say, Donnella. Burzynski's throwing up lots of red flags, but you're ignoring them. It's a textbook con game.

If anyone's sabotaging Burzynski's research, it's Burzynski.

I'm sorry Donella but I have to disagree, the FDA doesn't have to test every claim it gets. Its going to need evidence. Burzynski has no good evidence his treatment works.

Also, if his treatment worked and he had evidence he could disprove the blogger instead of threatening to sue him.

The FDA to the best of my knowledge don't steal ideas because they have no need, they don't produce anything they are merely a regulatory agency.

Also, the treatment is not an alternative to chemo it is chemo, the only difference are the fancy drapes being used to obscure this.

Orac has far more extensive material on it all, you should check here.

Curing cancer would be a boon to the pharmaceutical industry, just as every other live-saving treatment before has been.

You can't sell drugs to a dead person.

@pjlandis

Although I hesitate to use the word, the logic seems to be that these evil monsters are very pragmatic in their nastiness: hurting people is a vital consideration in itself. They know the drugs are useless and harmful, but they're actively designed to be so.

It seems to me that all pharmacologists and MDs must all be screened for non-psychopathy and quietly eliminated if they don't show their true nasty credentials.

Curing cancer would be a boon to the pharmaceutical industry, just as every other live-saving treatment before has been.

You can't sell drugs to a dead person.


It's also more profitable to keep people alive so that they can buy things like mild painkillers, cold and flu symptom relief, antacids, adhesive bandages, and so on. There's a lot of reliable money to be made off treating the everyday symptoms of living, useful medications taken once-a-day, and useless altie supplements.

It really shows the silliness of the cartoon villainy alties accuse pharmaceutical companies of. They're in the business to make money, and killing people is bad for their customer base. Alties who believe in pharma conspiracies are really out of touch with reality and human nature.

[Comment withdrawn at request of its author.]

"Once more what is the FDA scared of?
DO THE CLINICAL TRAILS."

The FDA and NIH both worked with Burzynski to design and run a clinical trial, providing him with money and resources. Burzynski backed out of that arrangement, so it's dishonest to say that no one is willing to research his ideas.

The FDAs concern has always been that even if Burzynski ever completed his trials based on the design they couldn't support drug approval. His studies are too poorly designed to produce reliable data.

See..http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/burzynski2.html

Even if you distrust QuackWatch, or conventional medicine in general, the basic issues with his clinical trials, like informing assistant investigators they're part of a trial, are troubling.

Let's really look at the facts. You say Burzynski doesn't have any proof he has helped people. Also, someone said "How many patients were treated with antineoplastons and didn't exhibit results even this good?" Here's my two cents... my mother had three primary cancers, malignant melanoma, cervical cancer and breast cancer. She went through 1 round of radiation and on her second round of chemotherapy, she ended up needing to quit because her body was so run down. She ended up dying after fighting hard for 3 years and taking all the medications and treatments her doctors suggested, with not much quality of life. I don't see radiation and chemotherapy as a cure either, along with all these drugs from the 70's & 80's that they're still using to treat cancer. Truth is, Burzynski's treatment has cured some people, not all, but some. Radiation/Chemo has cured some people, not all, but some. Fact being, my mother (who didn't know who Burzyski was back in 1993 when she was diagnosed), said that she didn't believe that the medical industry, call it Big Pharma, FDA (who does have deep pockets & charges a fee to push new drugs through quickly), Government, etc., wanted to find a cure. They are STILL using the same treatments as they did in the 70's! How much money has been pumped into cancer research? TONS! And they still haven't found any better ways to treat cancer patients?!?! It's a multi-billion dollar money maker for these entities. The FDA isn't in it to protect the US citizen... they (meaning the people running the FDA) are in it to protect their pockets and the others pockets that they are lining by working together as big entities usually do. All I know, is that if I had cancer, I would want ALL of my options. Not just the ones the FDA decides are best for me to know about. As far as I know, at this point, Brusynski hasn't killed anyone... and he clearly has helped some. BTW.. it's taking him so long to get through the clinical trials because he has NO funding from the FDA or any cancer research companies like most Pharma companies do. And, the bill for all of my mothers treatment... through the doctor's and Pharma's traditional methods... over a half million dollars (700K)!! For 1 person!! To me, $200 sounds like a fair deal for a chance to cure your body of cancer and have some quality of life too. Fact is... neither method will "cure" everyone. It should be up to each one of us to be able to decide which chance we want to take.

Greetings Marissa, I haven't met you on Skeptico's blog before.

Here are the prefaratory cards I shall put on the table:

I am an atheist and a general skeptic at heart: I value proof over opinion every time.

Although I accept that everyone has an opinion, as do I, I regard an opinion held in the face of disproof to be foolish. My opinion, admittedly, but that is not trumped by yours.

I do my best to remain courteous at all times: I believe it is reasonable to expect that equally from people who respond to me.

I respond to as many salient points of a contrary position as I can: my posts can consequently be quite long. Until the detailed observations or rebuttals I have made are addressed by the poster to whom I am responding, I do not regard my post as debunked.

... my mother had three primary cancers, malignant melanoma, cervical cancer and breast cancer. She went through 1 round of radiation and on her second round of chemotherapy, she ended up needing to quit because her body was so run down. She ended up dying after fighting hard for 3 years and taking all the medications and treatments her doctors suggested, with not much quality of life.

I'm sorry, Marissa. I wish it had been otherwise. However, please accept that malignant cancer is a very serious and potentially lethal ailment if left alone. In the same way that a person whose life is in danger after a major alcohol binge may feel beyond all pain until his or her stomach has been pumped (a necessary intervention to save his or her life), cancer treatment needs to attack the cancer with fury. Every cancer cell is marked as a cell of the carrier's body and is ignored by antibodies. The drugs can't tell either, but most drug companies are spending millions trying to find the little handles that will mark out tumour cells as anomalous: viz 5-fluoro-uracil that was invented in the late 50s for melanoma. This uses the trick that one thing distinguishing cancer cells from healthy cells is that they are always dividing, for which they need the RNA nucleotide uracil. 5-F-U is just like uracil except that it has a fluorine atom that "poisons" dividing cells. Since its invention, 5-F-U has been found effective in many different types of cancer, such as colorectal cancer.


I don't see radiation and chemotherapy as a cure either, along with all these drugs from the 70's & 80's that they're still using to treat cancer.

As opposed to homeopathy, which hasn't changed since the 18th century, or acupuncture, the same since at latest the second century BCE, and probably centuries earlier? Or much more recent aspirin, paracetamol, and tamoxifen (approved in 1990), herceptin (approved in 2010)... there are lots and lots of chemo drugs, each with different indicators, advantages and side-effects.

But WHY do pharma companies dilute their profits by still making the old stuff (for which they no longer hold patents and can no longer make large amounts of money from)?

Why not a) use one drug in perpetuam and say it's the only effective one, so they don't have to waste money on new ones or b) Scrap the old ones at intervals and charge ever more for their replacements?

Truth is, Burzynski's treatment has cured some people, not all, but some. Radiation/Chemo has cured some people, not all, but some.

Radchem has full, auditable (and duly audited) records of its successes and failures. These are public records, and they show the success rate is improving. What hard evidence in this wise does Burzynski's treatment have?

Fact being, my mother (who didn't know who Burzyski was back in 1993 when she was diagnosed), said that she didn't believe that the medical industry, call it Big Pharma, FDA (who does have deep pockets & charges a fee to push new drugs through quickly), Government, etc., wanted to find a cure.

Methotrexate (a widely used leukaemia chemo treatment) was invented in 1950 and recognised as a valuable drug immediately. It was finally approved by the FDA in 1988. Taxol took over 20 years to be approved. Lots of other drugs have been scrapped, some, such as thalidomide and Vioxx, very publicly, at great costs to the pharma companies involved. Others never see the light of day. Again, why do pharmacos do this if they know it's all useless?

Why does PharmaCo A not embrace a super-effective alternative treatment if if could bankrupt its major competitor, PharmaCo B?

They are STILL using the same treatments as they did in the 70's!

Except for the ones that came out in the 80s (e.g. methotrexate, 1988), 90s (heard of Herceptin?), 2000s (such as Alimta, 2004) and 2010s (eg Erivedge, 2012). There are HUNDREDS of chemo drugs, some milder and some worse than others. My mother is on tamoxifen, and it hasn't given her even mild indigestion.

How much money has been pumped into cancer research? TONS! And they still haven't found any better ways to treat cancer patients?!?!

All the time. Look it up. Every single year, there are new cancer treatments, as well as ones that cost millions but never passed the trials.

It's a multi-billion dollar money maker for these entities. The FDA isn't in it to protect the US citizen... they (meaning the people running the FDA) are in it to protect their pockets and the others pockets that they are lining by working together as big entities usually do.

And you know this... how? Altie therapists such as homeopaths make millions, but don't pay a penny in approvals costs. Drug companies lose their patents in a few years but still have to make the drugs even though other companies are copying them with no development costs.

Which ones are the rip-off merchants?

All I know, is that if I had cancer, I would want ALL of my options. Not just the ones the FDA decides are best for me to know about.

And the average drunkard would rather have another double-Scotch than a stomach pump. You have demonstrated very little knowledge about the pharma industry, but a lot of chip on your shoulder.


As far as I know, at this point, Brusynski hasn't killed anyone...

Would he tell you if he had? He doesn't have to, whereas pharma companies do>.

and he clearly has helped some.

What, because he says so? This is not clear to me. How is it clear to you?

BTW.. it's taking him so long to get through the clinical trials because he has NO funding from the FDA or any cancer research companies like most Pharma companies do.

I've mentioned how long it can take Pharma companies to get approval: Brusynski hasn't even started. And where on this whole, life-loving, blue-green planet do you get the idea that pharma companies in the US are funded by the FDA or cancer research companies? They are not. If you wish to aver otherwise, please provide evidence. And how much money has this man made from his cures? Do you know? Could he be rich without wanting to test his treatments, but just saying that he can't affford to test them himself? What are his actual testing costs versus his income?

And, the bill for all of my mothers treatment... through the doctor's and Pharma's traditional methods... over a half million dollars (700K)!! For 1 person!!

Multiple exclamation marks don't strengthen an argument, I'm afraid. I live in the UK, which has the much-derided National Health Service. Regardless of the rights or wrongs of socialised health, no member of my family has paid a penny for treatment, including my mother's MRIs, mammograms, biopsies, PET scans, CAT scans, blood tests, drug treatment etc. I had antibiotics X-rays and blood tests for double pneumonia, my tonsils and adenoids removed and two squint operations without my parents or me paying a penny.

Any other prescribed drugs on the NHS cost me a nominal prescription fee, no matter how much or how little the drugs actual cost. People over 60 and under 18 pay nothing at all.

Since my mother's cancer is at worst slow-growing, is not metastatic and she is in her 80s, she has refused gently-suggested surgery. She was on letrazole and is now on tamoxifen, neither of which has caused her the least discomfort (the tumour has quartered in size since she started). The drugs were changed by doctor's orders after a touch of osteopenia was found in her back, a possible side-effect. For that she is receiving Adcal D3 and alendronic acid, also free, and neither of which has given her problems.

We have UK home-grown pharmaceutical companies and drug approval bodies also, and people who believe chemo is useless, even though they don't need to pay for it. Whence the profit margin for Big Pharma? It's the few years of exclusive use they have after approval and before the patent expires. That's it.

To me, $200 sounds like a fair deal for a chance to cure your body of cancer and have some quality of life too. Fact is... neither method will "cure" everyone. It should be up to each one of us to be able to decide which chance we want to take.

Most people don't actually know best about their health. John Wayne had chemo for cancer in the 60s, felt awful and survived. He carried on smoking. In the late 70s he got sick again and espoused various quack therapies such as running with heavy weights on his wrists and ankles to rid himself of his affliction. After all, the drugs he'd had in the 60s were old ones, weren't they? He knew more than the doctors, didn't he?

John Wayne died in 1979 with cancer riddling his body.

Marissa, I'll say again, I'm sorry your mother died of cancer, I really am. I was worried almost to death about my own mother's disease: her mother had died of breast cancer while my mother was a child. I still have her, but I'm not going to apologise for that: I have experienced the cold apprehension, the nagging worry, the sleepless nights; the tests, checkups, exams, biopsies, X-rays, scans, blood tests... I share your fears during that time, and I understand, even if I was eventually rewarded by sobbing relief.

No doctor has done more than say to my mother that surgery would be a more decisive intervention than the mild drugs she is on. Why are they nice to her and nasty to others? The same caring, empathic, lovely oncologist who is so nice to my mother recommends surgery, radio and potent chemo for younger women and men with aggressive metastatic cancer, and I can't imagine she is any less caring when she does that.

Having met the lady several times, I refuse to believe that she is either evil (ignoring effective treatments because faceless drug companies say they're great for profits, even though her patients look awful) or stupid (the drugs she offers always make people worse, and she doesn't bother to scan the trade papers for more effective treatments because it never occurs to her to look).

Yet this lady has far, far, FAR more experience of the best and the worst aspects of cancer treatments than either of us: advising people to put their affairs in final order, or telling them that their final tests are clear. This lady wears her heart on her sleeve. Last time (as I will be next time), I was present as a "hearing ear dog" for my mother, and she hugged my mother and me when the X-rays showed another decrease in size. So did the nurse.

Is this woman stupid, evil, ignorant, or what? I could take "ignorant" if you could actually show that she was ignoring valuable evidence that what she was prescribing to the MOST SEROUSLY AFFECTED people was not working?

Do you think she doesn't read blogs like this? I'm an engineer, and I scan all sorts of pages on the Web for new ideas and discoveres. I see a lot of crap, but there is plenty of new, exciting stuff. Do doctors not do the same and look into new ideas that may help their patients?

Do you REALLY know the best treatment for you, or would you just rather assume you do?

Marissa:

Just because real doctors using real medicine were unable to help your Mother, that doesn’t mean Burzynski’s quackery works. And that would be true if real doctors had no idea how to treat cancers, and if they had never had any success in doing so, ever. That still wouldn’t mean that Burzynski’s quack treatments work.

And it’s not a fact that cancer treatments haven’t changed since the 70’s. On the contrary, as Big Al notes in the comment above, great strides have been made in the treatments of many cancers. The real fact is that it is Burzynski who has not changed his treatments. He is still pushing the same old bogus treatments that have never been shown to work. He is still touting these as “trials” (although any reputable researcher would have abandoned these failed trials long ago – that’s what you do when trials fail), and charging large sums of money for patients to take part in them (another thing real researchers don’t do). He then tries to sue anyone who reports these facts.

Also, as Big Al noted, the FDA doesn’t finance trials, and has no “pockets” of its own to protect, the way you suggest.

The real fact, Marissa, is there isn’t a shred of evidence Burzynski has helped anyone. And unlike a real scientist, Burzynski tries to use the legal system to prevent anyone reporting that fact. You say it should be up to each one of us to be able to decide which chance we want to take. How would anyone be able to make that informed decision if Burzynski gets his way and censors anyone who disagrees with him?

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