"Alternative" cancer clinic threatens to sue high school blogger

By Phil Plait | November 28, 2011 1:57 pm

Everyone has been touched by cancer in one way or another. If you haven’t had it yourself, the odds are extremely high you know someone who has, and who has died from it. I’ve lost loved ones to cancer, and it’s awful; it can take years filled with tests, hope, lack of hope, expensive therapy… and in the end the odds are what they are. It all makes for desperate times for those involved, with an emotional distress level that is beyond my ability to describe.

There are people out there who claim they can cure cancer, or have therapies that can mediate it. Some of these people are simply con artists, ready to swoop in as soon as they smell blood in the water, vermin that they are. Others are honest but wrong, thinking they have stumbled on some therapy that no one else has found. However, time and again, when these alternative methods are tested rigorously using controlled, properly done studies, they are shown not to work. In general this does not stop people from making the claims, however.

In Houston, Texas, is a man named Stanislaw Burzynski. He claims he has a method for treating cancer. He calls it antineoplaston therapy. However, according to the National Cancer Institute, “No randomized, controlled trials showing the effectiveness of antineoplastons have been published in peer-reviewed scientific journals.” That’s a bad sign. Furthermore, the FDA has not approved of antineoplaston therapy for use. Also telling is that “… other investigators have not been able to obtain the same results reported by Dr. Burzynski and his team”. Yet, despite this, Burzynski charges hundreds of thousands of dollars for people to get his therapy — though he has to say they’re participating in research trials, since the FDA won’t allow him to use his ideas as an actual treatment.

Those are red flags, to be sure.

However, I am not an expert on cancer, so I rely on the advice and expertise of others. Dr. Steve Novella, who certainly is an expert both in medicine and the misuses thereof, has some choice words about Burzynski and his ideas. So does David Calquhoun, a British pharmacologist. So does — at great length and detail — Dr. David Gorski, and so does the website Quackometer (and again here as well) and so does the Cancer Research UK Science blog.

Most importantly, so does Rhys Morgan. Who’s that? He’s a 17-year-old high school student who has blogged about Burzynski, in a factually stated but highly critical manner. So what did Burzynski’s clinic do?

They threatened to sue.

In general, it’s a little unusual, to say the least, for a team doing medical research to sue someone for criticizing them. That’s because real science thrives on criticism, since it’s only through critiques that the potential errors of a particular method can be assessed — that’s why research is supposed to be published in peer-reviewed journals as well. Suing is the antithesis of that idea.

Rhys has posted the letters sent to him by Burzynski’s clinic, and it’s actually rather amazing. Being threatened with libel is no fun, but Rhys handles himself absolutely correctly and with great aplomb. The threats from Burzynski’s clinic are, um, not very polite, to put it mildly. I’ll note that the clinic has threatened to sue multiple people, including Peter Bowditch and Andy Lewis, two other bloggers who have criticized antineoplaston therapy.

[UPDATE: The clinic is distancing itself from the threats made, which it is now saying were done by an independent contractor who is not the clinic’s lawyer.]

Why is this important? Because desperate families are willing to pay the exorbitant fees charged by the clinic when loved ones are dying of cancer. It breaks my heart, but it’s also totally understandable they would do this. Who wouldn’t, if they really thought some alternative treatment might work?

In this case though, there is no credible evidence to support Burzynski’s claims, and there is credible evidence to suggest it doesn’t work. And, intentional or not, the clinic’s threats of libel are producing a chilling effect, an atmosphere that silences and stifles the freedom of speech to critically analyze and present facts about Burzynski’s claims. That is unacceptable. If you have a moment, go read Rhys Morgan’s blog post, and leave him some love in the comments. You can also log into the Web Of Trust and vote on how reliable you think Burzynski’s website is.

Comments (101)

  1. Jim Cliborn

    Prostate cancer survivor here. Guess what? I told the doctor at the outset I only wanted science-based medicine. Now cancer free. Thank you science! Jim Cliborn

  2. jason

    Hmmm… Has this guy tried to sue wikipedia yet? They dont seem to be falling over themselves on the Antineoplaston entry to support him. by posting this am I going to be threatened with a suit?

  3. Tim

    I was just reading the “Keep Libel out of Science” page off to the side, then next thing I notice this post comes up. I see they’re suing for libel and probably just hoping this kid can’t afford lawyers.

    Harassing a high school kid, way to go Stanislaw Burzynski. I wonder if his lawyer Marc Stephens exists. He doesn’t seem to understand what libel is.

  4. pete

    @Tim (#2) – from what I read on this, Marc Stephens is not a lawyer, justa PR person. Who never heard of the Streisand Effect….

  5. MadScientist

    It should be a good time to sue Burzynski. If he’s performed so many clinical trials then he surely has all the records. I’m not sure you’re allowed to charge for therapy that’s in the trial phase either. At the very least he should have accurate patient records. I wish the federal agencies would simply state “Burzynski is a fraud”.

  6. Bob_In_Wales

    I’m with Pete@3 on this one. The contacts from Mr Stephens are simply not phrased correctly and do not sound like they come from a lawyer. Assuming they have been copied and pasted they also contain the occasional grammatical error which arouses my suspicions. Methinks somebody is trying to pull a fast one and that this is a crude attempt at intimidation.

    Which just makes it worse.

  7. Sarcasmaniac

    @3 and 5 – As you already pointed out, it’s doubtful this guy is a lawyer. However, given that an email sent by Rhys to the Burzynski clinic directly was forwarded to Mr Stephens, as detailed in Rhys’ blog, there is no chance in hell that the clinic can simply wash their hands off him.

  8. Perhaps the most worrying aspect of this is that Stephens sent Rhys Morgan a snapshot of his house from Google maps.

    This is a heavy handed threat of “we know where you live”. Despicable.

  9. So the “Doctor” who made a lot of ruckus by saying the FDA and others try to silence him, steal his ideas, etc. and even had his own documentary out (http://www.burzynskimovie.com/) tries to bully a highschool blogger? Considering that some people say that’s how he got the Japanese “independent” tests to back his claims, that’s not a good tact. *facepalm* -Pk

  10. Chris

    That kid is awesome. He has way more guts and poise than I did when I was his age.

  11. Chris Winter

    I took a look at Rhys’s blog, and I don’t think he has much to worry about — except losing some time from homework.

    This fellow Burzynski, though… thirty-four years of clinical research, and still no FDA approval? That just does not compute. Or rather, it computes to only one answer. And he’s charging people enormous sums to take part in those clinical trials…

    His whole approach put me in mind of this:

    http://www.chris-winter.com/Erudition/Reviews/G_Kolata/Heart_Raves.html

  12. DigitalAxis

    I’d like to think the Burzynski Clinic is about to face a “put up or shut up” moment, but I doubt we’ll ever see their records, and I can’t see these legal actions making it very far before a judge. All anyone’s seen thus far seem to be arguments of “you’re lying” and “we won previous court cases” (over what?).

  13. Chris

    On another positive front Brownback apologized for having his feeling hurt by the teenage girl’s tweet.

  14. There is something just soooo satisfying at leaving a comment on a website evaluation site that says “has ethical issues”. Googling “burzynski” must get many many different results to only a week ago.

  15. There’ll be an interview with Andy Davis of Quackwatch out very soon on the Token Skeptic podcast. This deserves to get wider attention. :/

    Speaking of which, there’s a panel featuring the Bad Astronomer himself (I think he’s overlooked it due to illness? Get well soon Phil!) on the Token Skeptic at : http://tokenskeptic.org/2011/11/24/episode-eighty-nine-on-great-superhero-skeptics-panel-from-dragoncon-2011/ – from Dragon*Con, Great Superhero Skeptics.

    Also, if you support women in skepticism, there’s another one on online civility, featuring Jennifer Ouellette, episode #88.

  16. MCGiorgi

    Clients should start asking what the success rate is for this procedure. I’m hoping that with what I assume is a 0% success rate most people, no matter how desperate they are, will think twice and decide not too go through with it.

  17. ccpetersen

    Perhaps the “Clinic” could use a little truth therapy in the form of emails and phone calls alerting the “doctor” to the fact that we don’t appreciate his attempts to threaten violence to a child.

  18. ceramicfundamentalist

    makes an interesting contrast to the recent faster-than-light-neutrino studies. those folks came up with a truly extraordinary result and published their paper and asked the world for criticism of their work. burzynski also makes an extraordinary claim, doesn’t publish in any peer-reviewed publication and tries to sue a 17 year-old boy who offers a critique of his work.

  19. ChazInMT

    I posted his blog on my Facebook page asking anyone who sees it to spread the word. Hopefully we’re all part of “Ground Zero” in a public relations atom bomb against Burzynski. What sort of idiot shakes a social media tree when he is clearly in the wrong and would be better off hiding in the shadows? Gimme a D, Gimme a U, Gimme a H!

  20. Jess Tauber

    Weren’t antineoplastons something used as weapons by Elron the elf AI in the Matrix saga?

  21. I did leave a comment on Mr. Morgan’s site. It is a little known fact about the legal system in this country that it is not actually hard to start a lawsuit. Its actually a little interesting when someone claims to have a case and doesn’t file. They could, though, even though they have nothing to go on. At that point, Morgan will have to respond, or risk default. Interestingly, the suit would actually be filed against Morgan’s parents. I hope he is keeping them in the loop about this.

  22. chris j.

    sending a “cease and desist” letter on behalf of an entity is something that only an attorney may do (at least in most jurisdictions in the US). a quick peek at the texas bar’s website shows that no one named “marc stephens” is licensed to practice law in texas.

    mr. stephens could very well face criminal penalties for this.

  23. ChazInMT

    I just found out he has a Movie on IMDB called “Burzynski”, imagine that. Anyway, it is highly rated!!! I think we need to regster with IMDB and help skew that down, it looks like 80% of the reviewers are the “Hate Big Pharma” camp people….ie anti-vaxers…lets balance this out here.

    http://www.imdb.com/title/tt1632703/

  24. Scote

    “sending a “cease and desist” letter on behalf of an entity is something that only an attorney may do (at least in most jurisdictions in the US)”

    Or a company employee, if I recall correctly. I think the limitation on attorney stuff is primarily geared towards taking on work for clients. But, IANAL. Even so, it doesn’t seem like Stephens is a direct employee of the clinic, so one wonders if what he is doing sending out C&D letters on behalf of his “client” is legal…

  25. David

    #17 Sadly we will never know the real rates since many of these operations have confidentiality agreements and other documentation for patients and families to not talk when things go wrong. Most of these operations realize that the truth of their treatment’s effectiveness would be enough to condemn them.

    I do have to ask, even with most of these “alternative” therapies being complete garbage does anyone ever wonder that something was missed? That there is a therapy that could help that was mishandled or suppressed? Any thoughts?

  26. Gary Ansorge

    You might also want to check out this link to the American Cancer Society,,,

    http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/PharmacologicalandBiologicalTreatment/antineoplaston-therapy

    Basically what they’re saying is that there is no evidence(that danged pesky word again) that this “therapy” works, though the FDA allowed him to continue trials. Oh well, if we use the shotgun approach(ie, try EVERYTHING) eventually something will come to light that actually does something however,,,that approach is very expensive, both in money and,,,people,,,

    Gary 7

  27. Paul W

    As suggested by an earlier comment, I did an internet search for “burzynski”. Most of the results were glowingly supportive. I wonder if the clinic has been using any special techniques to skew the ranking of search results, or if the current tempest over threats to the 17-year-old blogger is just not making itself felt yet?

  28. I notice in another letter to another blogger, Mr. Stephens said something to the effect of “And you continue to ask whether I am an attorney,” and then quickly changes the subject. He refuses to actually state that he is an attorney outright, likely because even he isn’t too stupid to understand that there could be legal consequences for stating that he is one.
    I have to say, I’ve extremely impressed by the way Rhys Morgan handled this! I honestly can’t think of anything he could have done better. He owned “Marc” at his own game. I daresay he handled it quite a bit better then I would have. My response would have been something more like this:

    “Dear Mr. Stephens,
    Please don’t tell my parents!!!!! I’m really really really sorry! Oh noes! Please, I’m sure we can work something out. Please contact my lawyer, whose personal website can be found here. I’m sure you’ll agree that an accomplished legal mind like Mr. Crabs’ (only slightly less formidable then your own) should be able to grasp the urgency of this situation, and bring this matter to a satisfactory conclusion for all parties.
    In the meantime, please accept the public apology I’ve posted online. You can find it using Google by looking for “GOATSE” (sort for “Genuine, Outspoken Apologies To Stanislaw’s Enterprise” – you can’t miss it). Please extend this apology to your client as well. Thank you for your understanding.

    I CAN USE CAPITAL LETTERS TOO!

    Sincerely,
    Joseph G.”

    Needless to say, I’d probably lose even a frivolous lawsuit against me :-P

  29. @#25 Scote: Even so, it doesn’t seem like Stephens is a direct employee of the clinic, so one wonders if what he is doing sending out C&D letters on behalf of his “client” is legal…

    As #7 Sarcasmaniac observed:
    However, given that an email sent by Rhys to the Burzynski clinic directly was forwarded to Mr Stephens, as detailed in Rhys’ blog, there is no chance in hell that the clinic can simply wash their hands [of] him.

  30. At this point, I honestly wonder what the ratio of threatened, baseless lawsuits is to actual lawsuits that proceed? I’m guessing something like 100:1. It really makes me despair for our justice system. A personal anecdote:
    My own father was threatened by some scumbag who accused him of illegally hosting hardcore gay (copyrighted) porn online. Given that my dad doesn’t even use (or know how to use) the sort of file distribution software involved, and is happily married, this of course came as quite a surprise to him. The kicker was that they offered to make it all go away with a cash payment of something like $4,000. They said that they’d go ahead with the lawsuit if they didn’t receive the money in X number of days. He contacted a lawyer friend who told him that this was a shakedown, and that he shouldn’t respond. When the time came and went, they generously extended the deadline (he ignored them). He hasn’t heard anything from them since (about 6 months).
    I looked around online, and I found several blogs about it – it turns out the same firm was sending out lots of these letters, apparently using the logic that many people would rather just pay the money, innocent or not, then risk finding out what their families might think of them if they had to go to court over it. The disgusting part is, this wasn’t a “Nigerian e-mail scam” – this was a real US law firm that was doing this. Some people just have no scruples or sense of shame.

  31. @David: Alternative therapies generally get called complete garbage because they are. It’s not a case of “suppressed,” or “something mishandled.” The usual tactic by the promoter is to claim astonishing results, along with testimonials. Then real science takes a look at the claims, doing a controlled study of the therapy. Most of the time, said “alternative” turns out to be no better than placebo. A small minority of the time, an effect is seen, but far less effective than “standard therapy.” The (very) rare times when something does turn up, it’s usually “equal” to, and becomes another “standard therapy.” You really don’t see it matching up to the initial claims. The response in the face of that is for the promoter to claim a conspiracy to “silence” the “cure.”

  32. @#2 Jason: Hmmm… Has this guy tried to sue wikipedia yet? They dont seem to be falling over themselves on the Antineoplaston entry to support him. by posting this am I going to be threatened with a suit?

    If you look at the Wikipedia talk page for the Stanislaw Burzynski article, someone claiming to be PR for the Burzynski clinic posted a boilerplate “concern troll” about the article that was also copied and pasted to the antineoplaston talk page. Additionally, (reverted) edits to both articles (removing criticism) were traced to the Burzynski clinic itself, and at least one person (who I suspect is a Marc Stephens sock puppet) posted long-winded spiels about how Wikipedia shouldn’t discount the idea that the FDA may be purposely trying to undermine Dr. Burzynski’s work, among other loony things.

    /OH NOES! I DID A LIBEL!!11

  33. CB

    I’m not religious, but I have to remark that praying can be a lot cheaper than pseudo-science and just as effective.

  34. Aeolus

    Let’s not lose sight of the fact that we are dealing with folks in Texas here. As the bumper stickers proudly exclaim, “it’s a whole ‘nother planet”, and, “it’s a mess in Texas”!

  35. @ 19 CeramicFundamentalist – Good comparison, I like it! BTW, is your name a Terry Pratchett reference?

  36. @24

    Here’s more about the Burzynski movie:
    http://wp.me/pmAWg-1nl

  37. Paul A.

    I’ve always wondered if the Cancer Centers of America are legit. You see their ads all the time and they seem to make some extravagant claims.

  38. Nigel Depledge

    David (26) said:

    I do have to ask, even with most of these “alternative” therapies being complete garbage does anyone ever wonder that something was missed? That there is a therapy that could help that was mishandled or suppressed? Any thoughts?

    Dara O Briain has a good take on this.

    For example, some herbal medicine has been shown to work. Scientists and doctors have a special name for it. They call it “medicine”.

    Weird thing about some of the anti-Big Pharma crowd. They’re fine with the idea of herbal remedies and plant extracts, but as soon as you isolate the active ingredient and chemically synthesise it (without having to kill thousands of trees!), it’s part of a big conspiracy.

  39. Stathis Dimopoulos

    Snake-oil therapies exist throughout the world and will continue to exist as long as there are people. It’s very common when everything else fails for anyone with an incurable disease to try alternative treatment no matter how extreme it sounds. Here in Greece a few years back the poison from the Cuban blue scorpion was marketed as cancer treatment by some “specialists”. It’s sick and immoral to sell false hopes but people need these like they need religion. You can’t avoid it.

  40. Microburst13

    Practicing law without a license is a crime. And threatening with photos of someone’s house is a form of harassment and stalking.

    Go Rhys, expose these people for the frauds that they likely are!

  41. Miguel Rhino

    Another legend, this time in Vietnam, has caused the recent extinction of the Sumatran rhino in that country.

    The urban story that tells about a former prime minister that was dying of liver cancer, and was cured after he took rhino horn, has created an absurd “gold rush” to hunt this fantastic animal, already critically endangered.

    Is so sad!

  42. Blargh

    Dara O Briain has a good take on this.

    For example, some herbal medicine has been shown to work. Scientists and doctors have a special name for it. They call it “medicine”.

    Or as Tim Minchin puts it in “Storm”:

    “By definition”, I begin, “alternative medicine”, I continue, “has either not been proved to work, or been proved not to work. Do you know what they call alternative medicine that’s been proved to work? Medicine.”
    “So you don’t believe in any natural remedies?”
    “On the contrary, Storm, actually, before I came to tea I took a remedy derived from the bark of a willow tree. A painkiller that’s virtually side effect-free: it’s got a weird name… darling what was it again? Maspirin? Err… Baspirin? Oh yes, Aspirin, which I paid about a buck for down at the local drug store.”

  43. Big Pat

    Well, being open minded skeptic we should all take a few minutes to watch his movie on NetFlix and then drop by IMDB and comment on it… the current reviews and ratings seem awfully one sided.

    http://www.imdb.com/title/tt1632703/combined

  44. inkvisitor

    Wow – I just mentioned the name Burzynski to a family member that works at MD Anderson – immediate response was that there he’s “a widely known charlatan.”

  45. Donna

    There’s a drug out there that has been scientifically tested and proven to help in the cure for cancer. It’s Avastin. But it’s not perfect (http://www.nytimes.com/2011/11/19/business/fda-revokes-approval-of-avastin-as-breast-cancer-drug.html). Let’s all take a deep breath and realize there is no clear-cut black-and-white answer to the cancer treatment dilemma. By bringing all this negativity to the issue, we’re not helping anybody, especially the folks who are suffering from this disease. We need to recognize that there are solutions to cancer – and horror stories – on both sides of the bridge. Perhaps we can meet in the middle and help the people who are truly suffering.

  46. ND

    Donna,

    “Perhaps we can meet in the middle and help the people who are truly suffering.”

    Who are the “we” and what is the middle?

    “By bringing all this negativity to the issue, we’re not helping anybody, especially the folks who are suffering from this disease. ”

    What do you mean by negativity? What exactly is your point?

  47. Chris Winter

    Bob_in_Wales wrote (#6): “I’m with Pete@4 on this one. The contacts from Mr Stephens are simply not phrased correctly and do not sound like they come from a lawyer. Assuming they have been copied and pasted they also contain the occasional grammatical error which arouses my suspicions. Methinks somebody is trying to pull a fast one and that this is a crude attempt at intimidation.”

    Bob,

    You’re right on target. I noted the first letter from Stephens to Rhys Morgan calls Burzynski his client, yet uses the address of the clinic as his return address. No lawyer uses his client’s address; he has his own office.

  48. @ Donna: I second what ND says. We all want to help people who are suffering. Please elaborate on what you see as “negativity.”

  49. MarkW

    Coupla things:

    1) I saw a twitter post on this subject, I forget who by, along the lines of “claiming to have a cure for cancer is like claiming to have a cure for virus”.

    2) Rhys Morgan should refer Marc Stephens to the answer given in the case of Arkell vs Pressdram.

  50. Ralph Cox

    First, I am happy to see that this post is much more measured and considered than some of what you have posted int he past. However I am concerned of your use of the word ‘alternative’ especially in quotes. As you mentioned, cancer treatments are ubiquitous, while effective cancer treatments are rare. Cancer treatment, but anyone standard, is hit or miss.

    The reason that i have a problem with labeling this treatment as ‘alternative’ is that it verges on creating a false dilemma between ‘alternative’ and ‘mainstream’ therapies by labeling ‘mainstream’ remedies as science based, and ‘alternative’ therapies as not science based. I am in no way defending ‘alternative’ therapies. I am not claiming that ‘alternative’ therapies are in any more valid than ‘mainstream’ therapies. What i am saying is that mainstream therapies, particularly for cancer, have nearly if not identical potential for magical thinking.

    I don’t believe that medical studies for drug safety have nearly enough rigor to be considered science, there is simply too much money to be lost if a drug is not approved. Fast track approval has made the process even less rigorous and less valid. We have seen many drugs in this fast track process ultimately proved either not effective, or not sufficiently effective to justify use.

    In particular, recently we saw that Avastin is being revoked as a drug to fight advanced breast cancer because it shows no effective against such cancers and has significant side effects including death caused by heart failure. In spite of this science, The Wall Street Journal, 2011 November 19, states that all indications are that doctors are not only going to continue to prescrive this treatment that has no basis on in science, but that lobbying efforts are in progress to remove the ability of the FDA to revoke approval of products that later on are shown scientifically to be of no medical value of a threat to life.

    It is certainly bad that a local ‘alternative’ clinic tries to intimidate a blogger so that they can continue to market a fraudulent cancer treatment that may or may not extend life. It is another thing for a multinational drug dealer to intimidate congress into allowing a ‘mainstream’ cancer treatment that has been scientifically proven to shorten life.

  51. David Schwartz

    To both 33 Norbrook and 43 Nigel please don’t mistake my comment for not understanding the procedure of acceptance of natural medicine making it normal medicine (and therefore evil, booga booga). Seriously though, we all realize that this is the process that gives us aspirin, morphine, and even leech treatment (which is legit). What I’m saying is there is always a possibility that an “alternative” treatment is not allowed to make this transition.

    Yes, generally speaking the scientific process and the evaluators are spot on in their assessments but there is always the possibility that something is missed or suppressed. I’m not advocating that there is a massed conspiracy out to destroy us through medicine (food on the other hand…) I’m instead saying that things slip though the cracks that may be helpful. And sometimes I do feel that there is malicious activity but I can’t point to anything so I have no leg to stand on there. All I wished to do was explore the point i was making.

  52. Calli Arcale

    Donna:

    We need to recognize that there are solutions to cancer – and horror stories – on both sides of the bridge. Perhaps we can meet in the middle and help the people who are truly suffering.

    This isn’t a case of two sides with the truth in the middle. This is case of a con artist swindling people who are truly suffering. He would love you to meet him in the middle, but so do Nigerian 419 scammers. It’s not a good idea to do that.

    He isn’t looking for solutions for cancer; if he were, he’d’ve published something helpful in the three decades that he’s spent supposedly studying this treatment. For all the thousands of people he’s treated, you’d think he’d have some sort of evidence by now, but he seems content to remain in Phase I and Phase II trials. (That’s right — he’s been at this since Voyager 1 was launched, and he still is only thinking about doing Phase III trials. Not that that’s slowing down his practice of prescribing it to people.) If he cared, why wouldn’t he want other cancer clinics to use this revolutionary treatment? If this treatment were revolutionary, why would he be supplementing it with conventional chemotherapeutic agents, sold through his own pharmacy at prices up to 10 times the normal market price? For that matter, if he’s enrolling patients in clinical trials, what gives him the unmitigated gall to charge them so exorbitantly for the privilege of being his guinea pigs? It’s wrong on so many levels. There’s evidence he not only prescribes chemo off-label for conditions it’s not approved for (which kind of makes your mention of Avastin apropos) but that he doesn’t actually tell all of his patients that he’s doing so. By law, if you prescribe offlabel, you have to get informed consent before doing so. In some cases, patients have said they weren’t even told *what* he was giving them. They thought they were just getting the antineoplastins. (Nobody thought they were getting a placebo; I understand his 34+ year “study” is a single-arm study, with no placebo group.) There’s also evidence that at least some of his patients aren’t told everything about their medical prognosis, including one woman who was not told for at least six months that her tumor was still growing. Presumably this would’ve been inconvenient for Burzynski to disclose, but it’s wrong to withhold such information. Patients have indicated they believe (and his marketing certainly suggests) that antineoplastons are safer than conventinal chemo, more effective, and also natural. None of those are true; it’s synthetic (he used to get it from human urine extracted from park septic systems — seriously), there’s no evidence it’s more effective (though it might possibly be), and far from being safer, evidence strongly suggests it’s pretty toxic — patients have talked of being fitted with central lines, as it’s so toxic it must be delivered directly into the heart for rapid dilution so it doesn’t destroy the patient’s veins, and attempts by independent researchers to duplicate his work (such as it is) have had to discontinue after seeing how difficult it is to administer it without actually *killing* the patient.

    Look for the middle ground? Maybe. But not here. Burzynski is transparently wrong. Being diplomatic about it will cost time, money, and human lives.

  53. MikeH

    Anyone else notice that the words “Burzynski Clinic” are PHOTOSHOPPED onto the side of the building on their Website? Thought they looked a bit…artificial, so I check and the aerial view on Bing shows that the letters don’t exist.

    Another red flag, to be sure.

  54. TheBlackCat

    “By bringing all this negativity to the issue, we’re not helping anybody, especially the folks who are suffering from this disease.”

    We’re not the ones bringing the negativity to this issue, they are. Charging hundreds of thousands, sometimes even millions, of dollars to families desperate for a cure for their children while giving them something for which there is not only no evidence of its effectivness, but can actually be dangerous, can in no way be considered positive.

    Neither can threating the families of people who point out this glaringly obvious fact.

    If you want to complain about negativity, you are targeting the wrong people. If this group actually cared about helping people with cancer they wouldn’t be trying to intimidate into silence people trying to protect cancer victims and their families.

  55. magista

    Mark W. @55 – the cancer/virus tweet was probably based on this SMBC comic.

  56. Boyd

    “Dr” Burzynski has been known for years as someone who has played fast and loose with the truth. Any cancer doctor in the Houston area knows about him and his therapy (originally sourced from human urine!), and have had to deal with his claims when talking to patients. People have tried for years to get him to stop, and he’s always been able to manipulate the legal and regulatory system to block them. A local news station did a significant report on him several years back that I had hoped would have been the end to his practice, but apparently not…

  57. Andrew

    Protecting cancer patients from fraudulent “therapies” that exist only to empty their pockets and keep them from using effective medicine is a very positive effort, indeed.

  58. GreyGeek

    Here is Burzynski’s early results:
    http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofessional/page5

    But, while we are on a bad doctor crusade, why stop at Burzynski?

    “Conflicts of interest affect more than research. They also directly shape the way medicine is practiced, through their influence on practice guidelines issued by professional and governmental bodies, and through their effects on FDA decisions.

    A few examples: in a survey of two hundred expert panels that issued practice guidelines, one third of the panel members acknowledged that they had some financial interest in the drugs they considered. In 2004, after the National Cholesterol Education Program called for sharply lowering the desired levels of “bad” cholesterol, it was revealed that eight of nine members of the panel writing the recommendations had financial ties to the makers of cholesterol-lowering drugs. Of the 170 contributors to the most recent edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), ninety-five had financial ties to drug companies, including all of the contributors to the sections on mood disorders and schizophrenia. Perhaps most important, many members of the standing committees of experts that advise the FDA on drug approvals also have financial ties to the pharmaceutical industry.

    In recent years, drug companies have perfected a new and highly effective method to expand their markets. Instead of promoting drugs to treat diseases, they have begun to promote diseases to fit their drugs. The strategy is to convince as many people as possible (along with their doctors, of course) that they have medical conditions that require long-term drug treatment. Sometimes called “disease-mongering,” this is a focus of two new books: Melody Petersen’s Our Daily Meds: How the Pharmaceutical Companies Transformed Themselves into Slick Marketing Machines and Hooked the Nation on Prescription Drugs and Christopher Lane’s Shyness: How Normal Behavior Became a Sickness.”
    http://www.nybooks.com/articles/archives/2009/jan/15/drug-companies-doctorsa-story-of-corruption/?page=1

  59. tim Rowledge

    Donna –

    We need to recognize that there are solutions to cancer – and horror stories – on both sides of the bridge. Perhaps we can meet in the middle and help the people who are truly suffering.

    The halfway point between right and wrong is *still damn wrong*. Compromise in matters of fact is simply a case of “stalling between two fools”

  60. Assumption makes an...

    Perhaps the “attorney” is a nutcase and doesn’t represent the clinic at all?

    http://blogs.houstonpress.com/hairballs/2011/11/burzynski_fanatic_threatens_bloggers.php

  61. Andrew Firth

    This is incredible, I read the blog by Rhys Morgan, and there is nothing (in my opinion) that could be construed as libelous, he has done great research, I wish I could do the same (and had the balls to do so)…

    …I have small balls… apparently…

  62. LarryR

    Still learning from reading this site and Phil’s and the blogger’s links.

    Thanks Gary Ansorge (#27), Beatis (41) for links to articles that present facts with proper references instead of heart-throbbing testimonials and “scientific sounding” balderdash.

    I also liked the article/editorial linked to in #66 written by hairballs. The last part of it brings the cost of self-enriching quackery down to a bottom line anyone, scientifically literate or not, can relate to: victims being victimized by con artists. Just another way of robbing the vulnerable and those who can least afford it.

    Finally, congratulations to Rhys Morgan for his courage, intelligence and willingness to investigate and stand his ground. Makes me proud to be Welsh (although removed several generations from Cymru and certainly diluted over those generations).

  63. TheBlackCat

    @ Assumption makes an…

    The problem is that Rhys contacted the clinic asking for them to confirm that this guy worked for them, and the email ended up in that guy’s hands. Even if he officially doesn’t work for them, they certainly support what he is doing.

    In fact, I strongly suspect he doesn’t officially work for them, so that when things get too rough they can claim they don’t have any control over him. Of course they have refused to disown him yet, and are feeding him information, so that won’t hold much water.

  64. Mapnut

    Is it a crime to practice law without being admitted to the Bar? Do Stephens’ actions qualify as practicing law?

  65. Sandra

    @Calli Arcale : I’m under the impression they have central lines because he is also giving them (somewhat random) conventional chemotherapy. This information from the Texas Medical Board ethics action against him.

  66. Chris

    Donna, Avastin is old news and more complicated than you think:
    http://scienceblogs.com/insolence/2010/09/the_saga_of_avastin_and_breast_cancer.php

    And it did not take thirty years. Which is how long Burzynski has been doing his “clinical trials.” Where are Burzynski’s full results?

  67. Calli Arcale

    Sandra — yes indeed; it’s definitely not just the antineoplastons. Some commenters at Respectful Insolence have suggested the possibility that his “research” into antineoplastons is just a smokescreen for the next woo he’s developing, so he can do other woo without the bother of new drug applications and whatnot.

    However, at RI, it was said that others have attempted to replicate his work with antineoplastons (which is tricky given that he hasn’t really PUBLISHED any — he’s published abstracts but not the data) but *stopped* because they couldn’t overcome the toxicity problem.

  68. MetaEd

    I found more about Marc A. Stephens aka #MAS who’s been bullying anyone that criticizes Stanislaw #Burzynski https://plus.google.com/u/0/107233369038542877815/posts/FC2dMJZZokR

  69. TJ

    What is amazing to me is that all the communication between Rhys Morgan and the supposed Lawyer for this clinic, including the original notice, was through EMAIL!

    That should be a read flag in and of itself. If a notice or other request from a lawyer doesn’t appear in physical hard copy form, with a verifiable law firms letterhead on it I take it as a scam.

  70. CM

    I find it interesting that all of these presumably scientifically-inclined minds are so quick to dismiss out of hand a therapy they’ve never heard of, a documentary they’ve never seen, and a clinic they know nothing about.

    Does it not occur to you that, in all that time, if the FDA had cause to shut Burzynski down as a quack, they would have done so long ago? In fact they’ve tried, several times, and each time the FDA has been laughed out of court. You don’t find that curious? Why so certain that he is the quack, that he is the one who is unethical? Exactly what evidence do any of you have to support that conclusion? Because of an email?

    While we’re on it: Do you not find it unethical–even slightly–to administer chemotherapy drugs to a child with a glioblastoma? A brain tumor that never, ever resolves with chemo drugs or radiation (for some very well known scientific reasons), and a therapy that is absolutely toxic and absolute torture to endure, and which inevitably cannot and will not save that child and cannot even extend her life beyond a couple months, tops–btw, that chemo is extremely expensive and extremely profitable–this everyday occurence you do not find unethical? Exactly why is that okay, in your estimation? I’m genuinely curious. And yet an experimental treatment that is nontoxic, not harmful, and is provided to otherwise terminal patients–they’re going to die with conventional treatment –that is the unethical thing?

  71. Chris Winter

    CM wrote: “And yet an experimental treatment that is nontoxic, not harmful, and is provided to otherwise terminal patients–they’re going to die with conventional treatment –that is the unethical thing?”

    You make it sound as if this experimental treatment (I assume you mean Burzynski’s use of antineoplastons) is a sure-fire cure for patients who otherwise would surely die of cancer. If I’m miscontruing that, I apologize in advance.

    In any case, if Burzynski’s treatment is more effective than conventional techniques, all he has to do is produce the statistics that demonstrate this. No breach of patient confidentiality would be involved.

  72. Ro

    So Laura – the person who this kid was writing about – actually has a blog documenting her experiences at the clinic in question. Maybe the kid should mind his own business because this is the result of her last MRI (today) http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day

    left frontal lobe mass 1.9cm x 1.7cm = 3.23cm (36% decrease in tumour since previous scan 6 weeks ago)

    In other words, when conventional medicine told her she didn’t have a chance – she chose alternative and look at that – it seems to be working. Look , SHE is the one with cancer – not that kid – she can choose whatever medicine she wants and it’s your choice to donate to her or not – but not to judge.

  73. Maggie

    What a wonderfully intelligent young man. I don’t know him but I am proud of him. Just because. Keep up the good work kid. I wish I had a friend like you when I was in high school.

  74. @76 CM: Why so certain that he is the quack, that he is the one who is unethical? Exactly what evidence do any of you have to support that conclusion? Because of an email?

    YES.
    The e-mails in question are bullying and threats. They boil down to “Shut up, or you’ll be sorry!” That’s a red flag the size of a football pitch right there. The website(s) in question were not spreading idle slander of Dr. Burzynski, they were asserting (truthfully) that there is no credible, independent evidence that antineoplaston therapy works. Now, real scientists are quite accustomed to having their conclusions questioned, and are typically well-prepared to respond with hard data refuting these claims. The absence of such a response, and the threats that we see in its place, speak volumes.

    You want to talk about unethical? How about charging the families of those suffering with cancer hundreds of thousands of dollars per patient for an unproven treatment? Shouldn’t these people being used as guinea pigs at least get a friggin’ price break for the risks they’re taking?

  75. @78 Ro: Unfortunately, one anecdote tells us nothing. Cancer goes into spontaneous remission all the time – sometimes temporarily, sometimes for 20 years, sometimes permanently. It’s awful when anyone is diagnosed with terminal cancer, and it’s natural for their families to pin their hopes on something, anything. Judgement tends to go out the window under that kind of intense emotional stress. That’s why people are so angry at the Burzynski clinic: we can’t expect people going through a situation like Laura’s to be able to make dispassionate judgement calls on unproven treatments, but we CAN expect the people offering them to at least be honest about how well proven their treatments are (according to all studies, not just a couple of cherry-picked ones).
    And don’t think I’m glibly dismissing the pain that people are going through. I lost my grandfather to terminal cancer a year ago. He was extremely healthy, generally, and probably would have lived another 15 or 20 years were it not for the cancer. He was also one of my favorite people in the world, and someone I still look up to and think about almost every day. Still, I count myself lucky that I was able to spend time with him before he passed, and I’m glad he was able to live out the last year of life on his own terms instead of desperately chasing some elusive quackery.

  76. Interesting update on that update:
    A press release from the Burzynski Clinic states that “Marc Stephens no longer has a professional relationship with the Burzynski Clinic.”

    That sounds like good news, until you read on:
    “These bloggers will be contacted by attourneys representing the Clinic informing them of the specific factual statements contained in these blogs which the Clinic believes are false and defamatory…”

    In other words, they fired the amateur assh*le and are hiring professional assh*les. That’s like being disappointed that the shotgun-toting bounty hunters you hired from the classifieds were unable to get rid of the termites in your house, and then going and hiring some Blackwater mercs to do the job instead. A more expensive wrong response is still a wrong response.

  77. Andrew

    CM:

    Why, yes, I do find it unethical to administer unproven chemotherapy at high cost to desperate patients. Why don’t you?

  78. TheBlackCat

    Does it not occur to you that, in all that time, if the FDA had cause to shut Burzynski down as a quack, they would have done so long ago? In fact they’ve tried, several times, and each time the FDA has been laughed out of court. You don’t find that curious? Why so certain that he is the quack, that he is the one who is unethical? Exactly what evidence do any of you have to support that conclusion? Because of an email?

    So rather than try to satisfy the FDA’s concerns, he instead hides behind the legal system. It is the same thing he is doing here. Instead of actually addressing the valid criticisms of his approaches, he instead hires someone to threaten critics online. Further, when that blows up in his face, instead of either addressing the concerns that were raised he hires lawyers to go after them in a country (the UK) with very lax libel laws.

    Because we all know all the great scientists in history tried to sue their critics into submission instead of simply answering their questions.

    This could all be settled in an hour by releasing the raw data, anonymized of course. But this guy doesn’t want use to see the data, and he is threating to sue anyone who points this out (or at least anyone living in a country that make libel lawsuits easy).

    He apparently thinks that science is settled in courts rather than the scientific literature (which he has pretty much completely avoided for the last 5 years). But that is not how people who actually care about science handle scientific disputes.

    And yet an experimental treatment that is nontoxic, not harmful, and is provided to otherwise terminal patients–they’re going to die with conventional treatment –that is the unethical thing?

    The problem is that the treatment can be extremely toxic in multiple different ways.

  79. Sergio

    I don’t think “that’s why research is supposed to be published in peer-reviewed journals as well. Suing is the antithesis of that idea”. They are published AFTER doctors, not smarter than Mr Burzynksi, have concluded it works (in this case it’s enough with this performing better than killer current treatments – admitted by government in antineoplaston’s patent plagiarized by US Gov) and each person can decide wether their live worth the price. But in no case are published in those important scientific publications to be insulted by people not being scientist in the matter, or at least doctors. Reading it and knowing the discriminations have been taken place against every “cure” or drug not from the big labs is at least required before to speak. Of course there are people who get paid to write, and suing them is the only way to stop them. I’m web marketer and personally know how it works and I can tell THERE IS people who gets paid for it, you understand it or not.

  80. Ah, yes, the “Big Pharma Shill Gambit”. Clearly this 17 year old is receiving fat checks from major pharmaceutical conglomerates, as are all research scientists who’ve ever investigated antineoplaston therapy. Which makes perfect sense, since ANPs can’t really be patented, anyway.

  81. Andrew

    “Of course there are people who get paid to write, and suing them is the only way to stop them.”

    How about death threats? Do you approve of them as a way to suppress complaints about bad medicine, too?

    “I’m web marketer and personally know how it works and I can tell THERE IS people who gets paid for it, you understand it or not.”

    How much is Dr. B paying you to convince sick people to pay for experimental unproven chemotherapy?

  82. Nigel Depledge

    CM (76) said:

    I find it interesting that all of these presumably scientifically-inclined minds are so quick to dismiss out of hand a therapy they’ve never heard of, a documentary they’ve never seen, and a clinic they know nothing about.

    Why do you find this so interesting?

    Why is trust in experts such a surprising thing to you?

    Does it not occur to you that, in all that time, if the FDA had cause to shut Burzynski down as a quack, they would have done so long ago?

    On what grounds?

    As has been pointed out in some preceding comments, it seems that Burzynski knows exactly how not to cross the line and do anything illegal. Of course, one could argue that peddling a treatment with no proven benefit should be illegal, but it apparently is not.

    Especially since he carries out his treatments under the umbrella of an ongoing “clinical trial” (which could be viewed as another reason that all clinical trials should be registered before they start – including what is to be measured and for how long).

    In fact they’ve tried, several times, and each time the FDA has been laughed out of court. You don’t find that curious? Why so certain that he is the quack, that he is the one who is unethical? Exactly what evidence do any of you have to support that conclusion? Because of an email?

    Well, partly. If Burzynski were legitimate, why would he have to threaten a libel suit against a guy who publishes rational, researched criticism?

    While we’re on it: Do you not find it unethical–even slightly–to administer chemotherapy drugs to a child with a glioblastoma? A brain tumor that never, ever resolves with chemo drugs or radiation (for some very well known scientific reasons), and a therapy that is absolutely toxic and absolute torture to endure, and which inevitably cannot and will not save that child and cannot even extend her life beyond a couple months, tops–btw, that chemo is extremely expensive and extremely profitable–this everyday occurence you do not find unethical?

    Sorry, you’ll have to provide a bit of background on this one.

    Exactly why is that okay, in your estimation? I’m genuinely curious.

    Again, not enough info to comment.

    And yet an experimental treatment that is nontoxic, not harmful,

    Actually, others who have tried to replicate this work struggle with toxicity issues, so Burzynski is either some kind of miracle worker or he isn’t actually giving the patients what he claims he is giving them.

    Which part of that is ethical?

    and is provided to otherwise terminal patients–they’re going to die with conventional treatment –that is the unethical thing?

    I think, more accurately, you should point out that the patients’ lives will be extended or their suffering lessened with conventional treatment, and the physicians who administer it are required to be straight with the prognosis. OTOH, this guy offers false hope.

  83. @89 Nigel Depledge: As an addendum to the toxicity issue, it’s been established that
    1: The Burzynski clinic administers “mainstream” chemo drugs as well as ANPs (charging quite high premiums while they’re at it) and
    2: ANPs are toxic enough in the doses they’re being administered in that they must be given through an arterial line directly to the heart to prevent venous damage. This alone wouldn’t be an issue if the treatment actually had some good evidence backing it up, but it does not.

    I think, more accurately, you should point out that the patients’ lives will be extended or their suffering lessened with conventional treatment, and the physicians who administer it are required to be straight with the prognosis. OTOH, this guy offers false hope.
    This, I think, is the one aspect of human nature that has propped up quacks since time immemorial. If you have an honest and competent doctor who tells you truthfully that your odds aren’t great, and a dishonest quack who claims he can cure absolutely anything, well, it’s not hard to figure out who the patient is going to go with.

  84. MaDeR

    Whoa, a lot of Burzynski fans or sockpuppets here. And why he had to be from my country (judging for surname)? :(

  85. PayasYouStargaze

    @86 Sergio:

    Your comment is a lot of rambling so perhaps you could clarify the points you make.

    I don’t think “that’s why research is supposed to be published in peer-reviewed journals as well. Suing is the antithesis of that idea”.

    Why don’t you think that? Do you think lawsuits are helpful in increasing the medical knowledge of the world.

    They are published AFTER doctors, not smarter than Mr Burzynksi, have concluded it works (…) and each person can decide wether their live worth the price.

    I will address your parenthesis below. Are you suggesting that Mr. B is smarter than doctors in general? Is there a way to determine that? Why would this man know more about medicine that qualified experts. Secondly, how does one put a price on human life? It’s all very well saying the patient can decide if they want to pay, but it ignores that the treatment centre are setting the price. Furthermore, the patient may be suffering an be unable to clearly decide what their own life is worth. Civilised countries don’t expect a patient to pay for their own medical treatment.

    (in this case it’s enough with this performing better than killer current treatments – admitted by government in antineoplaston’s patent plagiarized by US Gov)

    That is a very bold claim. If you have evidence that current treatments are killing patients you could win a Noble prize or something. It would be huge. Are you actually suggesting that the patients would life longer without the current treatments? On the other hand I suspect you can’t tell the difference between a patient dying after treatment has reduced their suffering or increased their lifetime and a patient being murdered.

    But in no case are published in those important scientific publications to be insulted by people not being scientist in the matter, or at least doctors.

    I don’t think you understand how peer review works. The peer review process opens up published work to be criticised by anyone with relevant qualifications, so that mistakes may be spotted and the work improved. The review given is as subject to criticism as the paper itself, and non-scientists’ opinions will carry less weight. This also appears to be the second time that you disparage doctors, despite them being experts in medicine and treatment.

    Reading it and knowing the discriminations have been taken place against every “cure” or drug not from the big labs is at least required before to speak.

    Do you really believe that? The poing of peer review is that you can discard biased views from those in industries which stand to make or lose a large amount of money. That is apart from the fact that any big lab would be all over any “miracle” cure as it would make them lots of money, as well as for its discoverer if a fair deal is worked out.

    Of course there are people who get paid to write, and suing them is the only way to stop them. I’m web marketer and personally know how it works and I can tell THERE IS people who gets paid for it, you understand it or not.

    Of course there are people being paid to write, and where their money comes from can have an effect on what they publish. However, if you want to attack a published opinion based on there being money behind it, you must find the evidence of the funding and not just because they don’t agree with the fairy tale you support. Here we are dealing with a teenage, amateur blogger. Is he being paid by some big lab to discredit Mr. B? It would be an amazing scandal if it were, but it seems the evidence points to a smart young man who is being attacked for attempting to expose a sham.

  86. Nigel Depledge

    Sergio (86) said:

    Of course there are people who get paid to write,

    Yes. We scientists have a special word for them. We call them journalists.

    and suing them is the only way to stop them.

    Right, so you don’t believe in a free press, then?

    And you quite clearly don’t believe in refuting an argument with evidence and reason either. So, given this, why should we pay any attention to what you say?

  87. Rens

    Sergio@86:

    Of course there are people who get paid to write, and suing them is the only way to stop them. I’m web marketer and personally know how it works and I can tell THERE IS people who gets paid for it, you understand it or not.

    A “web marketer” who doesn’t seem to know when to break up a wall of text and has english as a third language at best?

    Forgive me for saying this, but you sound roughly as credible as Marc Stephens..

  88. Jimmy Jones

    Well the point you people on here are failing to understand is that the National Cancer Institute, did ‘test’ his results, and did find his treatment ‘useless’. But then they published that instead of sticking to his dosage protocols, stupidly published how they diluted his treatment by something like 98% and therefore, obviously, it was useless ! Burzinski complained and sid no wonder people suffered water retention, as they were being pumped basically full of water. This shows the National Cancer Institute knew his treatment worked, and just tried to fiddle the results so it didn’t work, as they do not want a cure, else they would have been honest and carried out correct protocols. This is like someone saying that PEPSI-COLA is hosting another ‘PEPSI Challenge’ but everyone found COCA-COLA to taste really bad….only to find out PEPSI were diluting COCA-COLA with 98% water…. of course it wouldn’t be COCA-COLA but basically water coloured brown ! Come on people out there, use your brains and stop perpetuating the cancer holocaust the drugs companies rely on. It may not be nice to hear it, but you must be honest…

  89. Max L.

    Good post Jimmy…

    We live in a world where science, technology and medicine will continue to improve.
    One day we will inevitably look back. Radiation and chemotherapy will seem as barbaric
    then as bloodletting is today. Thank God we have visionaries who think outside the box
    of conventional treatments. This is the only way we can evolve and ultimately improve
    the human species. The majority of medicines treat symptoms not cause. By eliminating the cause of disease, we eliminate the symptoms. It it currently believed, we all have cancer
    cells in our system. It is not until they attach and start to multiply that we can be diagnosed with such a debilitating disease. The human body can cure itself of cancer if
    given the proper ammunition to fight with.

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