Today’s post will be relatively brief (for an Orac post, that is). The reason is that it’s some very sad news that depresses me greatly. It’s also because I don’t want to distract too much from the announcement I’d like to highlight. About a month and a half ago, around the same time that Stanislaw Burzynski managed to get off on a technicality, with the Texas Medical Board agreeing to dismiss its case against Burzynski because it apparently couldn’t go after him for treatment decisions made by doctors he hired, I met an unfortunate girl named Amelia Saunders. Amelia had been diagnosed with a brain tumor back in February, specifically an inoperable grade 2 diffuse astrocytoma. Somehow, Amelia’s parents found Stanislaw Burzynski, as so many cancer patients do. Given the massive costs associated with Burzynski’s antineoplaston treatment, using a combination of the Amelia’s Miracle website and impressive hustle and marketing, Amelia’s family managed to raise £250,000 to travel to Houston and begin treatment at the Burzynski Clinic with his “antineoplastons,” a treatment that, as I’ve explained, has no convincing evidence supporting its efficacy.

In one of my posts, I explained how Dr. Burzynski’s explanation for cysts that formed in Amelia’s tumor in which he claimed that this was evidence that his treatment was working was completely off-base. This resulted in Amelia’s father commenting on my blog, a comment that I couldn’t ignore and had to respond to. So I did. Unfortunately, Amelia was clearly getting worse, and I feared that the end was near. Knowing what the Saunders family would go through made that knowledge even more painful, and it was clear that even the Saunders were coming to the realization that Amelia was getting worse.

Unfortunately, yesterday the end came, and Mr. Saunders posted this to Amelia’s facebook page:

This is the update we hoped we would never have to write.

Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free.

Now she is.

Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had.

Our hearts are shattered into a thousand pieces.

Thank you, everyone, for your love and support. Our lives will never be the same again.

Take care

Richard (Amelia’s dad) x

There’s nothing to say other than to offer to the Saunders my sincerest sympathy. I have only the vaguest inkling of how horrible it is to lose a child, and there’s nothing that can be said to ease the pain right now. I also realize that this was inevitable and would have happened even if the Saunders had not sought out Stanislaw Burzynski. None of my anger or contempt is directed at the Saunders. In fact, contemplating the pain they must feel breaks my heart. On the other hand, contemplating the man who gave them false hope and enticed them into spending so much time raising money and subjecting their child to antineoplaston infusions fills me with outrage. That’s right. I’m talking about Stanislaw Burzynski.

That’s why I like the idea of the campaign that Bob Baskiewicz has come up with to wish Dr. Burzynski a happy birthday this year, skeptic style:

In honor of Dr. Stanislaw Burzynski’s 70th birthday on January 23rd, 2013, the Skeptics for the Protection of Cancer Patients are fundraising for St. Jude Children’s Hospital. Our goal is to raise at least $30,000 by Burzynski’s birthday, the approximate cost of entering one of his clinical trials of antineoplaston therapy. On his birthday, we will deliver a present to the Clinic, a challenge to Dr. Burzynski to match the total sum donated by skeptics, science advocates, and others who value good research into devastating forms of childhood cancer. The more you give, the more we ask of Burzynski.

Please visit http://www.crowdrise.com/fightchildhoodcancer/ and donate to St. Jude, a fantastic organization that does not turn away patients who cannot pay.

As I’ve heard it said, if Burzynski actually agreed to do this, it would be the only good thing he’s ever done for cancer patients in his entire miserable career. Do it in Amelia’s memory. Do it in the memory of all the patients over the years for whom Burzynski has promised to do so much better than conventional therapy and has never succeeded.

In the meantime, for those who come across this blog, remember that I’m not doing this to attack patients or their families. I’m doing it because, as a cancer surgeon and researcher, I hate it when patients are charged tens or hundreds of thousands of dollars to be enrolled in dubious phase II clinical trials that he never publishes in a form that has enough detail for scientists to tell if there is any evidence of efficacy. I can’t stand it when someone like Burzynski holds out false hope. That’s why I’m joining P.Z. Myers in asking you to help make Stanislaw Burzynski pay cold hard cash to a worthy cause.

He won’t, of course. He has no shame. But at least we can raise money for a worthy cause while at the same time bringing attention to Stanislaw Burzynski and what I consider to be his incredibly unethical behavior.

More on Burzynski:

  1. Burzynski The Movie: Is Stanislaw Burzynski a pioneering cancer researcher or a quack?
  2. When “personalized gene-targeted cancer therapy” really means “making it up as you go along”
  3. What Dr. Stanislaw Burzynski doesn’t want you to know about antineoplastons
  4. Dr. Burzynski and the cult of personality of the “brave maverick cancer doctor”
  5. Stanislaw Burzynski: Kind-hearted strangers and a failure of medical journalism
  6. Stanislaw Burzynski versus regulations protecting human research subjects
  7. Stanislaw Burzynski and “clarity” from the FDA
  8. Eric Merola apparently doesn’t like what Orac writes about Stanislaw Burzynski
  9. Stanislaw Burzynski gets off on a technicality
  10. Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies

Comments

  1. #1 herr doktor bimler
    January 31, 2013

    The entire Board was sued by the Association of American Physicians and Surgeons (AAPS) in 2007

    Are you sure you want to ally yourself with that gang of neo-nazis?

  2. #2 Denice Walter
    January 31, 2013

    @ Shay:

    Be careful what you say: we ‘re being observed by Sayer Ji.

    My most reliable cover story is to say that my expenses are being covered by my Uncle Rupert & News Corp.
    Since that’s so awful, people think I’m being honest.

    And we don’t mention you-know-who. AND you-know-what.

  3. #3 Didymus Judas Thomas
    At the Tu-Quack Center Technicality Technology Table
    January 31, 2013

    #194 MarcStephensIsInsaneInTheMemeBrain
    .
    “Not to mention the only reason Stan got off the TMB charge was due to a legal technicality.”
    .
    I appreciate it immensely when the “Mighty Ducks” refer to it as a “technicality” when they don’t approve of the decision. You remind me of the US Gub-ment lawyers who “Whine & Cheese” when the opposing party cites a case older than 50 years old, but when the Gub-ment cites a case older than 50 years old to support their case, suddenly it’s somehow different. The law is the law is the law, & if you can’t handle it, get over it. 🙂

  4. #4 Shay
    January 31, 2013

    @Herr Doktor

    Being a shill ain’t what it used to be.

  5. #5 Khani
    February 1, 2013

    #200 Yay! I can just run it through the washing machine!

  6. #6 Scott
    google
    February 4, 2013

    I stumbled upon this article by happenstance and just happened to of had stage 4 throat cancer in 09 and subsequent major neck dissection and voicebox removal and I scanned clear as recent as 6 months ago,I apologize for my ignorance and with that being said,Why in the world wouldnt these poor folks have solicited MD Anderson in Houston Tx I was damn fortunate as they saved my life,They are the very best cancer treating hospital in the world and about 90 miles from Huntsville,Tx,My prayers and respects are with this family!

  7. […] very sadly, her family saw her tumor begin to progress again in December, ultimately resulting in her death about a month and a half ago. In the process, Burzynski did what he all too often does and […]

  8. #8 Eric Thome
    healthy and not dumb
    February 21, 2013

    For you to attack Dr. burzynski is insane!! He has a !@#$#@! cure through our urine which may not be suitable for you but let one of your family generate this type of serious of cancer which only offers chemo-stupid radiation. He is a hero and anyone reading this should either do more research on him or email this idoit who posted this site making him out to be a criminal or even a bad person!! He probley works for the fda who could care less about you and your family. PINK SLIME ECOLI MADCOW NO RESPONCE TO ANTIBIOTICS how much will you trust someone who has no love for humanity only profit? This makes me so angry. Raise your own money you butt dont ask someone who has helped many familys from the saunders fate. Please people do your research and tell this ahole to recognize he is in no position to bad mouth this Dr. He is a great man who is persecuted by our government cause they cannot patent his cure for cancer so they make it almost illegal to practice. Just like marijuana. You my friend need to make a change!!! Thank you

  9. #9 Chris
    Neither here nor there...
    February 22, 2013

    This is the question for tonight!

    Eric Thome: Poe or no?

  10. #10 novalox
    February 22, 2013

    @Chris

    Judging by the overall general ignorance, as well as the overall lack of basic English grammar, I’d have to say not a Poe.

    Which really is sad, since it seems like eric’s education was wasted on him.

    @eric

    [citation needed].

  11. #11 herr doktor bimler
    February 22, 2013

    eric’s education
    Assumes facts not present in evidence.

  12. #12 LW
    February 22, 2013

    “He is a great man who is persecuted by our government cause they cannot patent his cure for cancer”

    Wasn’t one of the complaints that the evil They had, in fact, patented his cure? Of course, at least some of his patents expired years ago so I guess that doesn’t matter anyway.

  13. #13 JGC
    February 22, 2013

    For you to attack Dr. burzynski is insane!! He has a !@#$#@! cure through our urine which may not be suitable for you but let one of your family generate this type of serious of cancer which only offers chemo-stupid radiation.

    If he did have a cure—if antineoplastons were actually effective at treating advanced cancers—after 20 years of clinical’ studies he’d have a large body of evidence proving it. Why does has withhold publication and rely entirely on patient testimony to support his claims of efficacy?

    And if one of my family did develop cancer, I’d certainly advocate they receive standard of care radiation/chemo–unlike antineoplaston’s these have been shown to work.

    He is a hero and anyone reading this should either do more research on him or email this idoit who posted this site making him out to be a criminal or even a bad person!!>blockquote>
    I’ve done the research—the only information I’ve not been able to examine and consider are the results of Stan’s 60+ clinical trials from the last two decades. Why is that? Stan refuses to publish.

    “He probley works for the fda who could care less about you and your family.”

    Pharma shill gambit noted and dismissed. (BTW, Orac isn’t an employee of the FDA or other regulatory agency. Perhaps you should have done the requisite due diligence before posting?)

    how much will you trust someone who has no love for humanity only profit?

    Possibly the most succinct characterization of Burzynski I’ve seen this year.

    Please people do your research and tell this ahole to recognize he is in no position to bad mouth this Dr. He is a great man who is persecuted by our government cause they cannot patent his cure for cancer so they make it almost illegal to practice.

    Stop telling us to do the research, as if we haven’t: we have and find claims of antineoplaston’s efficacy entirely unsupported. Perhaps that would change if Stan actually published the results of his 60+ trials, but I’m not holding my breath.

    As for ‘cannot patent his cure’, two points:
    In the absence of any actual evidence that AN’s cure advanced stage cancers, there’s no reason why anyone would want to steal this ‘cure’, protected by patent or not. If the cure does work in the absence of patent protection there’s no barrier to anyone else—the government, Big Pharma, Walgreens for that matter—producing, selling and profiting from it. Patent protection isn’t an absolute necessary togenereat revenues, after all–aspirin is no longer under patent and lots of companies profit from its sales

    And as for ‘great man’, recall that only two possibilities exist:

    Antineoplastons don’t work, Stan’s clinical trials demonstrate this, but he’s withholding the results to continue selling false hope to desparate people for his own financial gain.

    In which case he’s a fraud.

    Or antineoplastons do work, Stan’s clinical trials demonstrate this, but he’s withholding the results to maintain a monopoly on an effective cure for cancer and thereby denying millions of patients worldwide access to a cure for the disease that’s killing them–again for his own financial gain.

    In which case he’s a monster.

    And if the cure does work, in the absence of patent protection there’s no barrier to anyone else—the government, Big Pharma, Walgreens for that matter—producing and selling it. Aspirin is no longer under patent, after all, and lots of companies profit from its sales

  14. #14 MarkL
    February 22, 2013

    Jeez, one thing is for sure, if Big Stan the misunderstood maverick ever gets his cancer clinic shut down (we can but pray), there is a fortune to be made opening a coffee shop/call in center for the scientifically inept and logically confused.

    Donut Eric?

  15. #15 Chris
    Texas
    March 1, 2013

    If he is a fraud then why has the board never been able to convict him? If his trials don’t work then why has the FDA taken him to a grand jury 5 times only to have patients testify to the effectiveness of the treatments? Why are so many of you shills on here trying to lie for agency’s that would lie to you about products known to cause cancer? Is Chemo a toxic chemical? Is radiation toxic to the body? Don’t give me a bunch of BS like “Well in small doses it does no harm” that’s like saying “Let me treat you with rat poison in small doses” Please clarify your positions because it seems that most of you have a certain agenda to sell to others.

  16. #16 Chris
    Neither here nor there...
    March 1, 2013

    No one disagrees with the very real issues with chemotherapy and radiation treatment. In fact, Burzynski actually uses chemotherapy, poorly. A good read on cancer and the development of treatments is: The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee.

    Oh, and rat poison is used prevent blood clots in people. My dad takes warfarin, and jokes about having to take rat poison. And the dosage adjustments are very difficult to get right, he did almost bleed to death when it was too high. (another good book that includes discussion on the risks and benefits of blood thinners is Heart 411 by Marc Gillinov and Steven Nissen)

    (also, the Pharma Shill Gambit is old and boring)

  17. #17 Mephistopheles O'Brien
    March 1, 2013

    Chris – if he’s right why doesn’t he publish his data in a form that other scientists can read and say, “Wow! This stuff really works!”

  18. #18 herr doktor bimler
    March 1, 2013

    If he is a fraud then why has the board never been able to convict him?

    Burzynski’s conviction for fraud is here:
    http://www.ratbags.com/rsoles/history/2012/0324burzynskifraud.pdf

  19. #19 herr doktor bimler
    March 1, 2013

    FDA taken him to a grand jury 5 times only to have patients testify to the effectiveness of the treatments?
    When did patients testify to a grand jury?

    Why are so many of you shills on here
    Please, name the commenters who are shills.

  20. #20 Narad
    March 1, 2013

    Is Chemo a toxic chemical?

    Sure. Maybe you should ask Scamley why he’s doing it, and badly at that.

  21. #21 Narad
    March 1, 2013

    Just by the by, wouldn’t a more accurate name have been “antineoplastoids“?

  22. #22 LW
    March 1, 2013

    “Is Chemo a toxic chemical?”

    “Chemo” is not a single entity. There are a number of chemicals used for chemotherapy, of greater or lesser toxicity and greater or lesser effectiveness. Antineoplastons are chemicals used for chemotherapy, are definitely toxic, and appear to be at the bottom end of the effectiveness scale.

  23. #23 Narad
    March 1, 2013

    Oh, and…

    If his trials don’t work then why has the FDA taken him to a grand jury 5 times only to have patients testify to the effectiveness of the treatments?

    The proceedings of a grand jury are, by definition, secret. I realize that you’re reading from the Merola/Jaffe playbook, but how do you know who testified as to what?

  24. #24 herr doktor bimler
    March 2, 2013

    The proceedings of a grand jury are, by definition, secret.
    — and the FDA does not convene them.
    The secrecy of grand jury proceedings has the advantage that Merola can make up as many grand jury investigations as he likes, and who will prove him wrong?

  25. #25 ran76
    March 12, 2013

    ” a treatment that, as I’ve explained, has no convincing evidence supporting its efficacy.” other than x-rays, MRI, patient statements, and the fact the US Government apparently tried to steal his patents

  26. #26 Lawrence
    March 13, 2013

    @ran76 – how about peer-reviewed publications of his data, you know, like every one single medical researcher provides to show that any new (in Dr. B’s case, old) treatments actually work?

  27. #27 herr doktor bimler
    March 13, 2013

    x-rays, MRI, patient statements, and the fact the US Government apparently tried to steal his patents

    These are all subjective, and give no indication as to whether the recipients of B’s treatment live any longer for it. A petty question, I know, but it matters to some people.

  28. #28 Krebiozen
    March 13, 2013

    ran76,

    other than x-rays, MRI, patient statements, and the fact the US Government apparently tried to steal his patents

    I think what has happened in some cases is that patients with brain tumors have had successful conventional treatment that was mistakenly thought to have failed. Post-surgical and post-radiotherapy inflammation can be mistaken for tumor growth in CTs and MRIs, and later when it subsides it can look like tumor regression. It is only recently that it has become clearer that the full effects of conventional treatment may not be seen until several months afterwards. When a patient is told their treatment has failed, is then treated by Burzynski and survives, it may look as if a growing tumor shrank due to Burzynski’s treatment when it was the earlier conventional treatment that actually succeeded. Those patients in whom conventional treatment really has failed will obviously not survive to make statements.

    To repeat what I have written elsewhere here, this small study from 2004 found that:

    In 9 out of 32 patients, the first post-radiotherapy MRI showed progressive enhancement. In 3 of these 9 the MRI improved or stabilized for 6 months without additional treatment. The authors conclude that patients with progressive lesions within 3 months after radiotherapy should not be eligible for phase II trials on recurrent glioma.

    This review from 2012 concluded:

    MRI should be interpreted with caution the first 6 months after standard treatment of high-grade glioma.

    Bearing in mind pseudoprogression and late response to RT and chemotherapy, we may have a number of patients who are understandably convinced that Burzynski saved their lives and who he uses as effective publicity for his treatment, along with CT and MRI evidence that appears to support him. The bottom line is it’s difficult to say what is happening with any degree of confidence without properly carried out clinical trials the results of which are then published. The fact that Burzynski hasn’t done this is what many skeptics have a problem with.

  29. #30 Doug
    March 25, 2013

    First of all… I’ve never seen anything where this doctor claims to cure cancer… in fact, the studies he cites in his own propaganda piece say his treatments are 25% or less effective.

    2. This blog is the first time I’ve seen anybody say the ANP’s do not work (to my knowledge the fda hasn’t even said this). So ill uave to look at the links you provide to see what you mean when you say that. I have, on the other hand, heard plenty of people say chemo/radiation does work… yet everybody I’ve ever known who has gone through traditional cancer treatment were dead within a year. So chemo/radiation is obviously (my opinion) not the answer, yet there aren’t thousands and thousands of Dr’s who administer these treatments and charge 20-30-40-50-100-200 thousand dollars… yet the fda has a bonet for stopping this one “quack”? Why? There are plenty of fish in the quack sea… this one obviously has better lawyers than you… move on.

    And lastly, if people want to pay this quack… who is the federal government to tell them they cannot???

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