Dear Evening Standard, it is immoral to promote the Burzynski Clinic

This Wednesday, the London Evening Standard published an article promoting a fundraising campaign set up in order to send a five-year-old girl suffering a rare form of brain cancer to the controversial Burzynski Clinic. This was despite the author of the piece already being aware that Cancer Research UK had raised concerns about the clinic and that seventeen-year-old schoolboy Rhys Morgan had received intimidating threats from those claiming to represent it.

I summarised my concerns in an email to the Editor (geordie.greig@standard.co.uk):

Dear Mr Greig,

I write to express concern at what I feel is the misleading and uncritical portrayal of the Burzynski Clinic in the 14th December article “Cancer girl’s £130,000 plea for life-saving operation in US” by Rob Parsons.

I am writing to you directly as I understand that Rob has already responded to criticism of the piece, stating that:

The reason is wrote the piece the way I did is that the family concerned have made up their mind to go ahead with the treatment, having satisfied themselves of its merits, and that in itself is worthy of coverage. My aim was to write the article reflecting what the family is doing and telling the story of their little girl, without making any claims for the efficacy of the treatment.

and that:

I acknowledge that the reporting by the media on treatments such as this does impact on how people see them, and perhaps how willing they are to consider spending money on them. But my aim was to try and tell the story of Chiane and leave people to make up their own minds as to whether they want to help her be treated at the clinic.

Further details of that exchange are available here.

Without wishing to comment in detail on individual cases, it is clear that Burzynski’s patients are very vulnerable. They are willing to try anything, whatever the cost, if they think there is even the tiniest chance it may be useful. I believe that the Burzynski Clinic are exploiting these people (and the well-meaning public) in an unscrupulous, unethical, even illegal manner. In presenting the Clinic so uncritically, the Evening Standard are effectively complicit in this.

In case you are not already aware of this, in order to protect vulnerable members of the public, the Cancer Act (1939) makes it illegal to take any part in the publication of advertisements offering to treat people for cancer, to prescribe any remedy for cancer, or to give any advice in connection with the treatment of cancer. Although I am uncertain whether uncritical news pieces are ‘advertisements’, I believe it would be immoral to ignore this legislation and ask that you bear this in mind.

I realise that the piece concluded with an acknowledgement that there had been criticism of the clinic and that Cancer Research UK had reported that the treatment is “unproven”. Placing the word “unproven” in quotes is misleading. It is a simple fact that the treatment is unproven – despite over thirty years of “clinical trials”. This also indicates that Rob had done some online research before writing the piece. In fact, he has since admitted that he was aware of the scandal involving Marc Stephens and Rhys Morgan (which has been reported in The Guardian). You should also be aware that as far as the legal and ethical issues are concerned, that is the tip of the iceberg.

I believe that the Evening Standard ought to set the record straight with a balanced, objective and accurate piece on the Burzynski Clinic and some of the scandal surrounding it. This should probably be written by someone with a scientific or medical background, who is well able to understand the issues.

Since Rhys Morgan published the threats he’d received from those claiming to represent the Burzynski Clinic, bloggers all over the world have been investigating the Clinic and reporting in detail. I have been keeping track of the main developments on my ‘Master List‘ post. I urge that you read this – in particular the sections entitled “Cancer treatment and conspiracy theories“, “What are antineoplastons? Is there evidence that they work? and “Legal and ethical concerns“.

Here is a link: https://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/.

I look forward to your reply.

Kind regards,

__________________________________________________________________________________________________________________________

UPDATE (22/12/11) I was not happy with the Evening Standard’s response to this email and have now made a complaint to the PCC. Further details are here.

62 responses to “Dear Evening Standard, it is immoral to promote the Burzynski Clinic

  1. Dr. Burzynsky is not exploiting patients — in fact he is exploiting patients to a far lesser degree than the conventional medical establishment and the pharmaceutical companies, who in most cases cannot provide even potentially viable cures for cancer, are. Even though Dr. Burzynsky has had his share of legal troubles in the US with the powers that be, the charge has never been that his cures don’t work. Even those persecuting him recognize that in many cases he has been successful to a greater degree than conventional treatments — it’s just that he is successful with methods that have not been accepted by the FDA. Also, while the FDA is busy trying to jail and bankrupt the man, the US government is busily patenting his findings. How is that for a double standard?

    • I find it amazing that you can be so confident he can ‘cure’ cancer, given that he has not provided any real evidence of this in over thirty years of trials. If, as you believe, he actually *can* cure cancer then he should be publishing his data and be open about his methods for the good of humanity.

      I have seen no evidence that anyone ‘persecuting’ him recognises that he has been successful to a greater degree than conventional treatments – could you provide a reference for this?

      In any case, this statement makes no sense, given that he is actually using conventional treatments as well as antineoplastons (which themselves are in effect a conventional drug). He is just prescribing in an unconventional and unethical way. The reason he is in trouble with the law is because he is breaking it.

    • @Judith: can you please source your claims on the US government patenting this? With legitimate source materials.

  2. Please watch the movie “Burzynski, the Movie” available on Youtube. He provides plenty of evidence including testimonials and documents which you can see for yourself.

  3. @Judith “We discovered from our local pharmacy that one medication the Burzynski Clinic had charged us over $2300.00 for could have been purchased from the pharmacy for around $170.00”

    By my calculation that is a 1253% increase on the ‘Big Pharma’ price!
    The TMB has noted several cases where Burzynski has not informed patients they are receiving conventional chemotherapy (misinformed consent), nor informed patients he owns the pharmacy selling the drugs (non-disclosure of interest).

    It has been revealed that antineoplaston treatment is actually an orphan drug that has been under study since 1958. None of Burzynski’s own studies demonstrate that his treatment is more effective than conventional treatment, in fact in 2005 Burzynski himself wrote “The serious side effects included single occurrences of fever, granulocytopenia, and anemia. The study is ongoing and accruing additional patients. The percentage of patients’ response is lower than for standard treatment”.

    I also refer you to Cancer Research UK’s statement (a charity which receives no government funding).

    “The fact that no other labs have managed to replicate Burzynski’s apparent success with antineoplastons or are interested in developing the treatment raises questions.”

    “….it is perplexing that since then thousands of patients have allegedly been treated with antineoplastons, yet there is not enough data to make a solid case for their effectiveness. And – more importantly – based on the evidence presented by Burzynski, the vast majority of the scientific and medical community remains unconvinced.

    As well as the doubts around the effectiveness of the treatment, the whole manner in which the clinic is offering treatment is unusual.

    Antineoplaston therapy is not licensed as a cancer treatment by the US Food and Drug Administration (FDA), so the Burzynski Clinic is offering the treatment only as part of a clinical trial. However, patients are being asked to pay many tens of thousands of dollars for the privilege of being on the trial – a highly unusual situation in clinical research, and certainly not the norm for UK trials.

    Furthermore, the scientific community expects the results of clinical trials to be published in the medical literature. As far as we can tell, Burzynski’s team have not published any results since 2006, which raises questions about exactly what kind of clinical trials they are running, and when we might expect to see the detailed analysis of their results.”

    I will also mention that the FDA highlighted a concern that Buryznki’s IRB failed to meet ethical standards when signing up patients for clinical trials and lacked patient protection in 2009.
    The Texas Medical Board are also investigating Burzynski’s approach to treatment which they state takes no regard of drug interactions or side effects.
    This coupled with the fact that Burzynski has registered 61 clinical trials and completed one but failed to clearly release any results, including the completed trial results, in the peer reviewed literature is an abomination. It highlights issues with the FDAs ability to regulate the way in which research is conducted and highlights the current issue of very poor transparency in the publication and release of research data to health professionals, researchers, scientists, patients and the public in general.
    It is unclear why journalists have failed to recognise this issue.

  4. It is unclear why bloggers have failed to recognize that the treatment works. You people are engaging in terrorism.

    • I agree that people who disagree with me or criticize or question things I believe in are engaging in terrorism.

      Therefore, I call upon the international community to arrange drone strikes on NoWay instanter.

  5. Also, I notched that someone asked about the documentary – so, you claim it to be debunked, but you refuse to answer anything in it. If your readers knew that the FDA was teaming up with one of his own scientists to file duplicate patents, if your readers know that the entire time the FDA was also trying to place him in prison, they wouldn’t allow the FACT the treatment worked into the trial—your readers might not read this blog anymore. You are the one engaging in propaganda, terrorist propaganda at that. Shame on you—you must love watching people die. Too bad you weren’t born in the 1940’s in Germany, Hitler would have loved you.

    • Show me the evidence. If there are patent filings, they are public record. Deliver it. Now.

      Sadly, anyone who has gone “Godwin” probably won’t have any interest in actual evidence, I know. But I had to ask.

  6. You are siding with the wrong crowd. The pharmaceutical companies haven’t come up with much to help people in the last few decades.

    Here is a study about the effectiveness of chemotherapy published in the prestigious journal Clinical Oncology (Morgan G, Ward R, Barton M. “The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies.” Clin Oncol (R Coll Radiol). 2004;16(8): 549-60). Their results:

    The overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA.

    Their conclusions:

    As the 5-year relative survival rate for cancer in Australia is now over 60%, it is clear that cytotoxic chemotherapy only makes a minor contribution to cancer survival. To justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required.

    Maybe Dr. Burzynsky offers patients better odds?

  7. @judith – If Burzynski offers better odds then where is the study demonstrating this?

    @noway Actually we’ve all seen the video and answered any questions raised by it. It would likely be illegal in the UK due to the cancer act (1939) which protects patients from biased and misleading information – such as those anecdotes which are presented as ‘evidence’ in the movie. Our advertising code states that testimonials for health products must be substantiated by evidence. Upon deeper inspection (actually, using nothing more than the movie and the transcript and slides presented with it) these cases, at best, do not hold true to how they were presented in the movie. A movie, nor an anecdote or a collection thereof, is not classed as good quality, robust, reliable, replicable or transparent evidence.

    It is quite obvious why bloggers have a problem with Burzynski. If the treatment works we want to see the data. The publications we have looked at by Burzynski and others attempting to replicate his work has been mixed, but on the whole more negative than positive and on the whole more methodologically flawed than good quality. Since 2006 it appears none of it has been peer reviewed and all of it has been presented as ‘conference abstracts’, this is highly unconvincing.

    Is it unreasonable to ask that Burzynski publish the data for all the patients he has treated in the past 30+ years – in all of those 61 clinical trials which he has registered but failed to tell us what happened? If he had a cure wouldn’t this prove it very simply and that be the end of that?
    Of course, if he didn’t then he wouldn’t want us to see it, because that would put him out of business – this where bloggers, researchers, scientists and skeptics alike all raise our suspicions.
    It seems especially weird that Buryznski charges so much for people to enroll in clinical trials – when usually, common practice, at least here in the UK is to pay patients to take part in such things…it seems even weirder that payments go directly to Burzynski, rather to the clinic or to a research institute or charity.
    If patients are paying to take part in, what they believe to be, useful research which would help future patients, as well as themselves, in understanding cancer and developing treatments for it, then surely it’s an ethical and moral obligation for Burzynski to release that data, so that that patients results can be used for that purpose. Yet Burzynski seems to have withdrawn 7 studies, cancelled one and left the status of 34 as ‘unknown’.
    I’d like someone to explain how on the earth the status of a clinical trial can be unknown.

    If you believe it’s the FDA stopping the data from being released then go ahead and contact the FDA and pressure them into releasing that data. When the data is released then perhaps concerns around efficacy will be answered.
    Though the very strangeness of how Burzynski does business, how much he charges, the incidents with side effects and doses that may have been too high would still be of concern. Especially those incidents concerning lack of informed consent and non-disclosure of interest…so those things would have to be stopped.
    Even if the treatment is shown to be effective, which seems unlikely with the current state of the evidence, but perhaps for one type of cancer in a certain subgroup of patients, even then it certainly wouldn’t be the miracle cure it claims to be. We would have a true percentage of effectiveness like in the study suggested by Judith, the current data already demonstrate that this is may not be large, since the treatment hasn’t been directly compared with other treatments in a phase 3 trial it’s hard to judge but in the 2005 case it was demonstrably lower than conventional treatment. It seems there have been no studies published which show Burzynski’s treatment offers better odds than conventional treatment. But if it did offer significantly better outcomes it would not be by any means be near as positive as Burzynski advertises it to be, probably a few percent, so the advertising would probably remain illegal. Also the treatment isn’t natural or non-toxic either, as Burzynski himself has proven in his published research, so those advertisements would have to go out of the window too.

    But yeah sure, if all of those issues were covered I’d certainly support Burzynski.

    By the way – you totally invoked Godwin’s Law.

  8. Dr. Gonzalez, another much maligned practitioner, and Dr. Robert Mendelsohn, author of Confessions of a Medical Heretic, both have pointed out, quite rightly in my opinion, that Western medicine has now become a religion, reliant on blind faith. You are all fervent believers. It is a fact that many interventions in current medical practice are not evidence based and not supported by scientific studies:

    http://well.blogs.nytimes.com/2009/04/02/the-ideology-of-health-care/

    In 2007 medical error was the 5th leading cause of death in the US:
    http://www.medicalnewstoday.com/releases/75042.php

    According the FDA, adverse drug reactions are the fourth leading cause of death:

    http://www.fda.gov/drugs/developmentapprovalprocess/developmentresources/druginteractionslabeling/ucm110632.htm

    To summarize: there are 2,000,000 serious adverse drug reactions requiring hospitalization ever year; 100,000 people die; and please note that this number only includes those who make it to hospital.

    It is also a know fact that many so-called scientific studies published in the best medical journals have been shown to be biased, fraudulent, or just plain wrong:

    http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/8269/
    http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0020124
    http://jama.ama-assn.org/cgi/content/abstract/294/2/218/

    In addition, pharmaceutical company after pharmaceutical company faces fines for fraudulent sales practices, marketing medicines for off-label use, and questionable production standards resulting in contaminated products which are then sold to people. Thousands upon thousands of people have died. GlaxoSmithKline was fined $3billion earlier this year. Pfizer $2.3billion.

    http://www.philly.com/philly/blogs/healthcare/133530683.html

    http://www.bloomberg.com/apps/news?pid=newsarchive&sid=a4yV1nYxCGoA

    http://www.nytimes.com/2010/10/27/business/27drug.html?pagewanted=all

    http://www.thehalsreport.com/2011/01/fraud-cover-ups-and-corruption-welcome-to-the-drug-industry/

    This is the orthodoxy you are upholding.

    All hail to the church of modern medicine!

    Let me quote from an interview with Dr. Gonzalez:

    “If you stand outside of the back door of Sloan-Kettering, you see the bodies coming out every day. Conventional oncologists lose patients every day, and no one says they’re murdering anybody… Patrick Swayze’s doctors have been lauded as heroes; no one came out and said that the Stanford oncology team are sleazy quacks making money and taking advantage of their victims… [But] if you’re an alternative practitioner and succeed, you’re still considered a sleazy quack. So it’s a very interesting dynamic that has absolutely nothing to do with scientific validity, objectivity, or evaluation of data – it has nothing to do with that at all. It’s almost a religious fervor… Conventional academic medicine is the last religion left in America.”

    Cheers.

  9. RALPH MOSS ON CHEMOTHERAPY, LAETRILE, COLEY’S TOXINS, BURZYNSKI, & CANCER POLITICS

    http://www.whale.to/c/moss.html

    LL When you look at the statistics chemotherapy is a standard treatment for all types of cancer generally speaking.

    RM Yes, it has become.

    LL However, when you really look at the statistics, you were saying, only a few respond.

    RM. Yes, 2-4%.

    LL. How in the world, Dr Moss, can it be considered a standard cure, when it works for 2-4%, and very specific ones?

    RM We are dealing with an industry. It is not supported by the facts. The way that it is done is this. The drugs are tested in test tubes, and they look for things that will kill cells. After you have found something that kills cells, cancer cells, cell lines which are very abnormal non-typical sort of growths, maybe a new life form almost, then you put it into animals. Then if it kills the cancers before it kills the animals, and shrinks the tumours, you consider you have an active agent. You then put it into people, and go through the 3 phases the FDA prescribes for this, and basically if you can shrink the tumour 50% or more for 28 days you have got the FDA’s definition of an active drug. That is called a response rate, so you have a response..

    LL Different from a cure?

    RM Quite a bit because when you look to see if there is any life prolongation from taking this treatment what you find is all kinds of hocus pocus and song and dance about the disease free survival, and this and that. In the end there is no proof that chemotherapy in the vast majority of cases actually extends life, and this is the GREAT LIE about chemotherapy, that somehow there is a correlation between shrinking a tumour and extending the life of the patient.

    RM If there is one thing you should pick up from this show tonight it’s this: If you ever get into a situation where a doctor recommends chemotherapy to you or your family ask to see the studies that the chemotherapy actually extends the life of the patient.

    LL With chemo you may be shortening your life, certainly be under discomfort, certainly incurring huge costs. It can bankrupt you or your family. You have a right to know

    RM What are the actual toxicity? Go to a library to get a physicians desk reference, or my chemotherapy report. I am continuously amazed. I was doing some research due to my consultations on AML–a type of Leukemia, and the treatment is so intense and toxic that in the older group that this particular patient fell into 40% die from the toxicity of the treatment.

    LL 40% would have lived longer if they hadn’t had the treatment.

    RM And the cure rate is miniscule, under 10%. It is terrible odds. In Las Vagas you wouldn’t gamble with those odds unless you were crazy. The doctors fudge the statistics. They are confounding and confusing different issues, the response rate, the cure rate, the one year survival rate and so forth. Many doctors don’t know any better.
    ….

    RM Chemotherapy is machismo practiced to the N’th degree. It is a war in which you are the battleground, lucky you…

  10. I don’t like to ignore comments but I really don’t have time to respond in detail to the mammoth posts by Judith, nor do I have much to say to the offensive nonsense put forward by NoWay.

    Since I started blogging I have been called all kinds of outrageously offensive things but ‘terrorist’ is certainly a new one. It’s ironic that it’s people like me who tend to get accused of defamation – when I am always careful to be truthful and accurate in what I write.

    The main points raised by Judith are in fact covered above by myself, Vince or Mary, or in my Master List post here: https://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

    Such comments are a perfect illustration of the ‘conspiracy theory’ myth expounded by the Burzynski Clinic and many supporters of alternative medicine. What is somewhat ridiculous in this particular instance is that the Burzynski Clinic actually use conventional chemotherapy – but in an unconventional and unethical way and at hugely inflated prices.

  11. Not covered at all, Josephine. You just keep referring back to it as if it were gospel. As I said, you are promoting a religion.

    • I’m not quite sure what you mean by ‘it’. Is ‘it’ conventional medicine? Well, that is what Burzynski is prescribing, as I have said over and over and over again.

      You also seem to have a very poor understanding of the importance of evidence-based medicine and the lives it saves every second of every day. Unfortunately, however, I don’t have time to educate you in detail on every comment.

      It seems obvious to me that there is a clear difference between ‘belief’ in modern medicine and religious faith. The difference is that the former is founded on science and reason and requires evidence. The latter does not. That is a very basic point. Belief in alternative medicine, however (though, once more, this is emphtatically *not* what Burzynski is using) does seems to me too to be almost like religious faith. A good example of this would be belief in ‘energy healing’ such as reiki. Having visited your website (which, I might add, would be in breach of the Cancer Act, were it UK based), I note that you are a practitioner yourself. Why do you have such faith in such methods? There is no robutst evidence of efficacy, and no plausible mechanism for action.

      I also wonder why you have such an interest in Burzynski? And why do you have such a keen interest in criticising this blog (without actually reading it properly, it seems)?

      • So much for “scientific” medicine
        http://www.businessweek.com/magazine/content/06_22/b3986001.htm:

        For [Dr. David] Eddy, this is one small step toward solving the thorniest riddle in medicine — a dark secret he has spent his career exposing. “The problem is that we don’t know what we are doing,” he says. Even today, with a high-tech health-care system that costs the nation $2 trillion a year, there is little or no evidence that many widely used treatments and procedures actually work better than various cheaper alternatives.

        This judgment pertains to a shocking number of conditions or diseases, from cardiovascular woes to back pain to prostate cancer. During his long and controversial career proving that the practice of medicine is more guesswork than science, Eddy has repeatedly punctured cherished physician myths. He showed, for instance, that the annual chest X-ray was worthless, over the objections of doctors who made money off the regular visit. He proved that doctors had little clue about the success rate of procedures such as surgery for enlarged prostates. He traced one common practice — preventing women from giving birth vaginally if they had previously had a cesarean — to the recommendation of one lone doctor. Indeed, when he began taking on medicine’s sacred cows, Eddy liked to cite a figure that only 15% of what doctors did was backed by hard evidence.

        A great many doctors and health-care quality experts have come to endorse Eddy’s critique. And while there has been progress in recent years, most of these physicians say the portion of medicine that has been proven effective is still outrageously low — in the range of 20% to 25%. “We don’t have the evidence [that treatments work], and we are not investing very much in getting the evidence,” says Dr. Stephen C. Schoenbaum, executive vice-president of the Commonwealth Fund and former president of Harvard Pilgrim Health Care Inc. “Clearly, there is a lot in medicine we don’t have definitive answers to,” adds Dr. I. Steven Udvarhelyi, senior vice-president and chief medical officer at Pennsylvania’s Independence Blue Cross.

  12. This is a comment from a patient in response to a critique of the film:
    “I am a patient of Dr. Burzynski, so I will tell you firsthand what it’s like…..First I want to say unless you’ve been in someone’s cancer shoes, you shouldn’t talk about an experience you know absolutely nothing about. I have recurrent cancer and went through the whole chemotherapy/radiation experience. 8 rounds of intense chemotherapy and went to radiation everyday for 6 weeks. It didn’t work. My cancer came back less than 2 years later in my liver. I am a young mother with 2 daughters who really wants to live to take care of them. Did chemotherapy and lost my hair again. Heard about Dr. Burzynski and today I have hair again, and feel great. My cancer is non visible on a scan just a little scar tissue and my tumor numbers are still going down. I can do everything a normal person does with my children instead of laying in a bed most of the day and feeling like a truck ran over me. Not to mention looking emaciated. Back up to a normal weight. There is no guarantee in life ever. Dr. Burzynski NEVER promises you a cure, but gives you some hope. So to someone who is terminal and who has everything to live for? This is everything. It’s about choices. I should be able choose AND pay for whatever I want when it’s my life in jeopardy. What’s it hurting anyone else? Dr. Burzynski really does care about his patients just as any other Dr. should. ”
    (http://www.villagevoice.com/2010-06-01/film/quack-quack-goes-burzynski/ in the comments section)

  13. Also this:
    http://www.burzynskipatientgroup.org/

    The tagline reads:
    Burzynski Patient Group: We are Living Proof

    On the right hand side is a list of names, and as you click on each name, you get a testimonial. Herewith the list:

    BRAIN CANCER

    Braiden Norton
    Bryce Garst
    Crystin Schiff
    DW
    David Doherty
    Dorothy Boner
    Dustin Kunnari
    Eric Zielinski
    Evan Ravenelle
    James Treadwell
    Jamie Brown
    Jane Kammet
    Jared Wadman
    Jason Merkle
    Jennifer Ciano
    Jessica Ressel
    Jodi Gold-Fenton
    Jonathan Chung
    Joshua Thompson
    Kyla Freitag
    Kyle Ledy
    Laurel Press
    Lester Mouscher
    Marisa Hislop
    Mark Carico
    Mary K. Brittian
    Mary Vukich
    Matthew Anderson
    Matthew Smith
    Matthew Weiss
    Michael Keller
    Nicholas Stoyer
    Pam Winningham
    Paul Michaels
    Roy Hash
    Ryan Smith
    Shontelle Hiron
    Sophia Gettino
    Susan Hale
    Thomas Lombardi
    Timothy Lally
    Tony Tondelli
    Tori Moreno
    Tracy Hall
    Travis Murphy

    BREAST CANCER
    Betty Starr
    Bogumila Barton
    Carol Bricker
    Christina De’Troi Egoscue
    Donna Batog
    Florence Litwicki
    Jolene Smith
    Karen Brown
    Laureene O’Dorisio
    Nataliya Skarlat
    Pat Petrowski
    Peggy Demske
    Robbin Herrera
    Sheila Herron
    Sophia Wojdelko
    Tracy Edry

    COLON CANCER
    Chris Onuekwusi
    June Haskell

    CONNECTIVE TISSUE DISEASE
    Pam Murphy

    ESOPHAGEAL CANCER
    Mark Snyder

    LUNG CANCER
    Laura Jo Hofsess
    Mary Lou Berger
    Shaun Bancroft

    LUPUS
    Darlene Nichols

    LYMPHOCYTIC LYMPHOMA
    Margaret Lux
    Alexandra Kowal

    MELANOMA

    Jessica Kerfoot

    MESOTHELIOMA
    Elizabeth Illies

    MULTIPLE MYELOMA
    Dagmar Burghardt
    David Emerson
    Laura Levasseur

    NON-HODGKINS LYMPHOMA
    Charles Novy
    James Fry
    Joann Callahan
    Karol Landram
    Margaret Manning
    Mary Jo Siegel
    Melody Bullock-Corkhill
    Michael Going
    Neal Dublinski
    Patrisha Harrison
    Rebecca Sawyer
    Teresa Kennett

    OVARIAN CANCER
    Carrie Gruhn

    PERIPHERAL T-CELL LYMPHOMA
    Mark Anderson

    PROSTATE CANCER
    Carl Camp
    Carl Eatough
    Frank Cancro
    Isaiah Clinton
    Jacques Pley
    James Annear
    Joe Long
    John Nelson
    Ken Bergener
    Robert Moore
    Ronald Green
    Ronald Munsterteiger
    Williard Korsmo

    Thank God for the internet. Now no one has a monopoly on any one story.

  14. There is now a website containing a multitude of testimonials from Dr. Burzynski’s patients:

    http://www.burzynskipatientgroup.org/

    Click on any name on the right hand side. There are plenty.

    • Thanks. I am well aware of the Patient Group, as you would realise had you been reading my blog closely. I have two points to make here:

      1) Patient testimonials do not constitute reliable evidence.

      2) Marc Stephens, still listed on the Patient Group site under ‘Marketing and Sponsorship’ has been sending out intimidating ‘legal’ threats to bloggers including a 17-year-old schoolboy, and a former patient of Burzynski.

      http://www.burzynskipatientgroup.org/contact-us

  15. Another comment on the Village Voice review:
    “You mention those who exploit cancer patients, gouging them of thousands of dollars. But let me ask you something: do you know how much it costs to receive standard, typical cancer treatments if you do NOT have insurance? I happen to know, because my mom went through this very experience. We took her to MD Anderson for treatment of a GBM. Guess how much chemo & radiation cost? Over $160,000. That is not a typo. For a GBM patient with a 5 year survival rate of 2.4%, $160,000…all because she didn’t have insurance. You are totally right: many people out there who will exploit desperate cancer patients.

    Temodar, the highly toxic and immune-destroying drug they gave her, costs over $300 per pill. $300 for pure poison! If that’s not gouging, I’m not sure what is. They should be saying, “I’m sorry, this is the best we have. It will kill cancer cells, yes, but it will also destroy your immune system. Your quality of life will be diminished. It is likely you will still die. You can take it if you want. It’s free.”

    And something else: before we went to MD Anderson, we had an appointment with Dr. Burzynski. Sadly, they informed us that they could not treat her UNTIL she’d gone through surgery, chemo and radiation and failed…i.e., the cancer returned. And trust me Alan when I say this would have cost nowhere near $160,000. Why wouldn’t they treat her? Because the FDA had tied their hands in 2009, and stopped allowing him to treat people until they go through standard treatments and fail. Why would they do that when standard medicine has only a 2.4% success rate for GBM’s?

    It seems you didn’t watch the documentary. Watch the stories of people he has helped. I am amused by those who think he’s out to gouge people; on the contrary, his prices are very reasonable, and his treatment is non-toxic too!”

  16. SEATTLE ONCOLOGIST CONCLUDES
    BURZYNSKI RESULTS ARE “ASTOUNDING”:

    http://www.ralphmoss.com/burdick.html

    “A well-respected oncologist has concluded that the effects of Dr. Stanislaw R. Burzynski’s antineoplaston treatment for brain cancer are “astounding” and need to be intensively investigated.

    The doctor is Robert E. Burdick, M.D., who has been in the private practice of medical oncology in Seattle, WA for the last 27 years. He is a faculty member of the University of Washington and participates in cancer research in that state. He made his evaluation as an expert witness for the Burzynski side in the form of a detailed eight-page letter dated February 19, 1997 to the judge in Dr. Burzynski’s case, the Hon. Sim Lake.

    Dr. Burdick reviewed the case records of all the brain cancer patients who were included in Burzynski’s FDA approved CAN-1 trial initiated in February, 1996. The purpose of the review was to have an independent oncologist critically examine these records to ascertain the veracity of the results and the toxicity of the treatment as compared to the current standard treatment.

    Burdick carefully discusses the 17 cases that were submitted for his review. Since he is a medical oncologist, evaluation of the radiological evidence was carried out by another prominent doctor in the Washington, D.C. area. These 17 represented the “responders” from a total of 40 patients receiving antineoplaston therapy at that time.

    Dr. Burdick reports that in the 17 patients, there were 7 complete remissions in 6 patients. That is because included among these was one patient who had two complete remissions: he discontinued antineoplastons and the tumor grew back. He then resumed antineoplastons and had a second complete remission. In addition, there were 9 partial remissions and 2 stabilizations.

    Dr. Burdick wrote, “The average duration of antineoplastons necessary to obtain a complete remission was 10 months, with a range of 2 to 20 months. The average duration of therapy with antineoplastons necessary to obtain a partial response was 8 months, with a range of 1 to 14 months. The average duration of complete remissions is 16+ months with all six complete remissions continuing to remain in remission to the best of my knowledge through January 1, 1997.”

  17. http://www.ralphmoss.com/burdick.html

    “A well-respected oncologist has concluded that the effects of Dr. Stanislaw R. Burzynski’s antineoplaston treatment for brain cancer are “astounding” and need to be intensively investigated.

    The doctor is Robert E. Burdick, M.D., who has been in the private practice of medical oncology in Seattle, WA for the last 27 years. He is a faculty member of the University of Washington and participates in cancer research in that state. He made his evaluation as an expert witness for the Burzynski side in the form of a detailed eight-page letter dated February 19, 1997 to the judge in Dr. Burzynski’s case, the Hon. Sim Lake.

    This experienced physician concludes, “Research needs to continue on these very promising agents. We need to know such things as the optimal dose of these agents, the optimal route of administration, the optimal duration of treatment and many other details too numerous to mention.”

    The irony in all this is that Judge Sim Lake himself has precluded any discussion of the efficacy of the treatment in Burzynski’s trial. “

  18. Judith – testimonials are not convincing evidence of efficacy (this is why trials are undertaken in the first place). Personal experience is equivalent to an uncontrolled trial with a single patient – you can perhaps understand why this is not considered reliable.

    And just to be clear, are you really citing whale.to as a credible source of medical information?

  19. @mad_gav I am citing an interview with Dr. Ralph Moss at whale.to. Dr. Moss worked at Sloan Kettering & was fired for refusing to lie to the public about laetrile. Read the interview.

    BTW I also cite the New York Times, the FDA, and the Journal of the American Medical Association at various other points.

    To be clear, what I am saying is that those much vaunted scientific trials and articles in prestigious medical journals have been shown to be unreliable:

    “In the paper, Ioannidis laid out a detailed mathematical proof that, assuming modest levels of researcher bias, typically imperfect research techniques, and the tendency to focus on exciting rather than plausible theories, researchers will come up with wrong findings most of the time. His model, based on the rates in which studies had been overturned, predicted that 80 percent of non-randomized studies (by far the most common type), 25 percent of so-called gold-standard randomized trials, and as much as 10 percent of the platinum-standard large randomized trials turned out to be wrong.” (http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0020124)

    These trials then produce gold standard drugs such as Vioxx, Avandia, and Celebrex, not to mention DES and Thalidomide, which then end up maiming or killing tens of thousands of people and costing the pharmaceutical companies millions if not billions of dollars in fines and settlements which barely make a dent in their vast profits.

    These are the people whom you implicitly trust and to whom you contrast Dr. Burzynski as a fraud. When someone goes to the oncologist and is given chemotherapy that has been demonstrated to be 2.3 per cent effective, and not told that percentage, is that not fraud, particularly if that treatment costs the patient over a hundred thousand dollars? It is socially sanctioned, legal fraud promoted by the people who stand to gain from it, and by the people, like you and Josephine, who have been brainwashed into believing in it.

  20. Once more, I have not been brainwashed into belief. My beliefs are based on solid reliable evidence. It isn’t a matter of having ‘faith’.

    You are fortunate that you are in a position to take developments in modern medicine for granted, without which we probably wouldn’t be here, alive and well enough to discuss it. You certainly wouldn’t be able to rant at me from across the Atlantic were it not for science – and what has been developed using the scientific method. The very method upon which good, conventional clinical trials are based.

  21. Pingback: Dear Dr Hilary ………… « Nucella's Blog

  22. Modern medicine is great at trauma intervention and at infection control through antibiotics. It sucks at treating chronic diseases like cancer and arthritis.

    What part about the 2.3 per cent success rates with chemotherapy is not clear?

    What part about the discovery that many scientific trials have been shown to be biased, fraudulent or just plain wrong is not clear?

    What part about the ongoing fraud committed by pharmaceutical companies, which also manufacture cancer causing substances, is not clear?

    I am able to “rant” at you from across the Atlantic because I’ve had my appendix removed when it became inflamed (trauma medicine) and because I received antibiotics when needed. I fully recognize these advances in medicine and their usefulness.

    Neither appendix removal nor penicillin have been subjected to double blind, randomized trials. They are just known to work because they’ve been shown to work.

    On the other hand I’ve seen my mother die not of cancer but of cancer treatment — and uncounted others have had the same experience.

    I am serious: your blind belief in science is as unexamined as any fundamentalist’s belief in Jesus. Think about it.

    • I do not dispute that some trials are not well designed, that companies often do not publish unfavourable results and that this can give a misleading impression. This is scandalous, I agree.

      It is also one of the reasons I have been asking the Burzynski Clinic why they have not published their data.

      • There appear to be 38 published articles from 1977 – 2012 in peer reviewed Journals from Burzynski…

        http://www.ncbi.nlm.nih.gov/pubmed/?term=burzynski+antineoplaston

        Read the abstract of this one for example – published in peer reviewed journal – Integrative Cancer Therapies:

        http://www.ncbi.nlm.nih.gov/pubmed/16484713

        Thoughts?

        Integrative Cancer Therapies (ICT) is a peer-reviewed quarterly journal focused on the scientific understanding of alternative medicine and traditional medicine therapies, and their responsible integration with conventional health care. Integrative care includes therapeutic interventions in diet, lifestyle, exercise, stress care, and nutritional supplements, as well as experimental vaccines, chrono-chemotherapy, and other advanced treatments. This journal is a member of the Committee on Publication Ethics (COPE)

  23. This is your “good scientific method” as applied to medicine:

    “The paper detailed how researchers were frequently manipulating data analyses and chasing career-advancing findings rather than good science, and even using the peer-review process to suppress opposing views.

    “The studies were biased,” said Ioannidis. “Sometimes they were overtly biased. Sometimes it was difficult to see the bias, but it was there. At every step in the process, there is room to distort results, a way to make a stronger claim or to select what is going to be concluded. There is an intellectual conflict of interest that pressures researchers to find whatever it is that is most likely to get them funded.”

    Ioannidis noted that, in addition to the factors which doomed nutritional studies, drug studies had the additional corruptive force of financial conflict of interest – much to the detriment of doctors and patients. “Doctors need to rely on instinct and judgment to make choices,” he said. “But these choices should be as informed as possible by the evidence,” said Ioannidis.

    He also noted that, “I’m not sure that more than a very small percentage of medical research is ever likely to lead to major improvements in clinical outcomes and quality of life.”

    A friend of mine worked in a lab that did such studies. She said the mice that died were often excluded as “outliers”. Studies that did not work “didn’t count”. Another friend of mine, a chemist, worked in quality control in a pharmaceutical company. She said her job was an ongoing battle to keep substandard products from going to market. She was finally let go for being too stringent. Why should scientists be any less human than say politicians or Enron executives? You will have honest scientists and you will have dishonest scientists. They all contribute to the stores of scientific knowledge. Some of that knowledge will be reliable, some not so much. Some of the knowledge that is deemed to be reliable at one stage will be proven wrong later. When we look back 500 years from now, if we are still around, we will consider the cancer treatments now current barbaric, on par with the practices of the Inquisition. The Inquisitors meant well too.

  24. Pingback: Burzynski blogs: My Master List | Josephine Jones

  25. Judith:

    Whale.to remains an unreliable source of information, as do testimonials.

    Ioannidis’ findings are helpful, in so far as they encourage greater scrutiny of research. However, they neither ‘prove’ that the scientific method doesn’t work nor that another method (for example testimonials) are better.

    As you can see from the figures you provided:

    90% of ‘platinum’ trials are “correct”

    75% of ‘gold’ trials are “correct”

    and 20% of non-randomised trials are “correct”

    Where do you think testimonials would figure in this list of estimates?

  26. And about 80 per cent of actual medical practice has not been subject to any trials at all, to wit, aspirin, penicillin, most surgeries, etc.

    That 20 per cent correct rate on non-randomized trials leaves me with a heck of a lot of confidence, given that chance gives odds of 50/50.

    Meta-analyses have yielded a 2.3 overall efficacy rate for chemotherapy across the board. That means out of a 1000 people receiving it 23 people live and 977 die. Out of 100,000, 2300 live and 97700 die. How is that for statistics? No wonder people are willing to try the Burzynski clinic. And who are you to stop them “for their own good” because survivor testimonials are not good enough for you? At the very least, after conventional medicine has failed them, people should have the right to go to the Burzynski clinic to try to save their own lives. What do you want them to do: curl up an die because conventional medicine said there is nothing more we can do for you? I say let them have options. I say stay out of their way and stop moralizing over their decisions

    BTW survivor testimonials have value if those survivors would have otherwise died. My understanding that those are the only people Dr. Burzynski is allowed to treat.

  27. Citation needed I’m afraid:

    Then you might like to address the issue of the clinic making use of the chemotherapy you dismiss and the extortionate prices they charge people for doing so?

  28. Pingback: The Evening Standard fail to address my concerns about the Burzynski clinic – will the PCC act on this? | Josephine Jones

  29. Citation needed for what?

    2.3 % effectiveness for chemo:

    Morgan G, Ward R, Barton M. “The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies.” Clin Oncol (R Coll Radiol). 2004;16(8): 549-60). Their results:

    The overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA.

    For Burzynski only being allowed to work with people who failed chemo, I refer you to my comment of December 20th (11:35), quoting someone with firsthand experience:

    “Before we went to MD Anderson, we had an appointment with Dr. Burzynski. Sadly, they informed us that they could not treat her UNTIL she’d gone through surgery, chemo and radiation and failed…i.e., the cancer returned. And trust me Alan when I say this would have cost nowhere near $160,000. Why wouldn’t they treat her? Because the FDA had tied their hands in 2009, and stopped allowing him to treat people until they go through standard treatments and fail. Why would they do that when standard medicine has only a 2.4% success rate for GBM’s?”

    From my reading elsewhere I’ve gleaned that they give people standard chemo drugs if they are not enrolled in antineoplaston trials. I’ve also read that some people questioned their financial practices. But the person whose post I quote above also had the following to say:

    “You mention those who exploit cancer patients, gouging them of thousands of dollars. But let me ask you something: do you know how much it costs to receive standard, typical cancer treatments if you do NOT have insurance? I happen to know, because my mom went through this very experience. We took her to MD Anderson for treatment of a GBM. Guess how much chemo & radiation cost? Over $160,000. That is not a typo. For a GBM patient with a 5 year survival rate of 2.4%, $160,000…all because she didn’t have insurance. You are totally right: many people out there who will exploit desperate cancer patients.

    Temodar, the highly toxic and immune-destroying drug they gave her, costs over $300 per pill. $300 for pure poison! If that’s not gouging, I’m not sure what is. They should be saying, “I’m sorry, this is the best we have. It will kill cancer cells, yes, but it will also destroy your immune system. Your quality of life will be diminished. It is likely you will still die. You can take it if you want. It’s free.””

    Let me be clear: my problem with your position and Josephine’s position is that you call Dr. Burzynski a fraud and accuse him of gouging people _in contradistinction to_ the pharmaceutical and medical industry. It would seem that _their_ quackery and gauging is socially sanctioned legal. Why? Because they are the powers that be. How on earth can drugs with 2.3% effectiveness be anything other than quackery and gouging? My point is that people suffering from cancer should be given a CHOICE. From your perspective it is perfectly acceptable for the woman above to hand over $160,000 to MDS Anderson for chemotherapy drugs that don’t work, even though they’ve been scientifically approved, but not to hand over money to Dr. Burzynski for antineoplaston therapy. It boggles the mind.

  30. And here is the citation for 80 per cent of medical procedures not being backed by science:

    http://www.businessweek.com/magazine/content/06_22/b3986001.htm:

    For [Dr. David} Eddy, this is one small step toward solving the thorniest riddle in medicine — a dark secret he has spent his career exposing. “The problem is that we don’t know what we are doing,” he says. Even today, with a high-tech health-care system that costs the nation $2 trillion a year, there is little or no evidence that many widely used treatments and procedures actually work better than various cheaper alternatives.

    This judgment pertains to a shocking number of conditions or diseases, from cardiovascular woes to back pain to prostate cancer. During his long and controversial career proving that the practice of medicine is more guesswork than science, Eddy has repeatedly punctured cherished physician myths. He showed, for instance, that the annual chest X-ray was worthless, over the objections of doctors who made money off the regular visit. He proved that doctors had little clue about the success rate of procedures such as surgery for enlarged prostates. He traced one common practice — preventing women from giving birth vaginally if they had previously had a cesarean — to the recommendation of one lone doctor. Indeed, when he began taking on medicine’s sacred cows, Eddy liked to cite a figure that only 15% of what doctors did was backed by hard evidence.

    A great many doctors and health-care quality experts have come to endorse Eddy’s critique. And while there has been progress in recent years, most of these physicians say the portion of medicine that has been proven effective is still outrageously low — in the range of 20% to 25%. “We don’t have the evidence [that treatments work], and we are not investing very much in getting the evidence,” says Dr. Stephen C. Schoenbaum, executive vice-president of the Commonwealth Fund and former president of Harvard Pilgrim Health Care Inc. “Clearly, there is a lot in medicine we don’t have definitive answers to,” adds Dr. I. Steven Udvarhelyi, senior vice-president and chief medical officer at Pennsylvania’s Independence Blue Cross.

  31. And also this:

    http://www.washingtonmonthly.com/features/2007/0710.brownlee.html

    You’ve become conspicuously silent, @Josephine and @mad_gav. Are you ignoring the crazy person in the hopes that she will go away or have I finally won the argument?

    At any rate, I have nothing more to say, as I think what I have said so far pretty much covers it.

    Happy holidays!

    • I don’t think you’re crazy, nor do I think you’ve won the argument but I really don’t have time to argue with you right now. I am incredibly busy at the moment. I’ve already baked three cakes today.

      Merry Christmas!

  32. this is my friend who is getting treatment currently at Burzynski for an “incurable” brain tumor. http://teamhannah.com/blog/ Her latest MRI shown in the video shows the tumor has shrunk by 56% percent since starting treatment. She talks to the other former patients in the group you discredited all the time for encouragement and hope. Are all these people in a conspiracy? Faking tumors and MRIs in some sort of grand hoax to do what??? It sounds more like the other way around to me.

    • Nobody is accusing anyone of faking tumors, although there have been reports of MRI scans being read wrong. Nor is anyone accusing the other patients of being in a conspiracy.

      However, the behaviour and ethics of the clinic and Burzynski himself are highly suspect. I have also investigated the subject, and here are my findings: Burzynski is playing the hope card to fleece vulnerable people. http://blog.anarchic-teapot.net/tag/stanislaw-burzynski/

    • I find it very difficult discussing these issues with patients and their friends and families. I don’t want to make things any more stressful than they already are. But since you came to me, I feel it’s only right that I try to answer you as honestly as I can.

      To summarise, I echo what anarchic teapot has said – we aren’t accusing anyone of faking tumours. We are drawing attention to the various legal and ethical problems with the clinic.

      I find it distasteful that the clinic are using patients themselves (along with medical records) to promote the clinic (not only through newspaper articles and blogs but also, for example, on Facebook) while also charging them hundreds of thousands of pounds. For example, if I were seriously ill and in a clinic for any reason, I would be very uncomfortable with the clinic publishing my medical records and photographs in their promotional material. It’s unthinkable, really.

      It’s also not possible for critics to comment on the scans without upsetting patients. They have put them into the public domain but it seems morally wrong for them to be discussed in any detail. For that reason, it is rare that you will find critics of the clinic questioning the scans. By this, I don’t mean to imply that I don’t believe the tumours have shrunk. And I also don’t feel it’s any of my business to discuss individuals’ medical records without their consent.

      In any case (as I’ve said in a previous comment), testimonials from individuals don’t constitute reliable evidence. We need to see results from good, large scale trials. And we haven’t. Despite over thirty years of trials, we have still not seen the publication of meaningful data. As Rhys Morgan discusses here http://rhysmorgan.co/2012/01/burzynski-morally-reprehensible/ that is morally reprehensible.

      Concerns have been raised not only by outsiders criticising the clinic but also by former patients and their families, such as Wayne & Lisa Merritt (who feel they were scammed by the clinic and were sent legal threats as a result of writing about their experiences). One former patient, Lola Quinlan, is even seeking damages in court (http://www.courthousenews.com/2012/01/19/43165.htm).

      I’m sorry if you find it distressing that people are being so negative about the clinic. I truly do wish Hannah and the other patients and their friends and families the very best. I hope that the treatment is successful.

  33. Judith:

    The paper to which you link in reference to your 2% claim specifically excluded the conditions which respond best to chemotherapy. It prompted the following response when published:

    http://www.ncbi.nlm.nih.gov/pubmed/15997929

    “The authors omitted leukaemias, which they curiously justify in part by citing the fact that it is usually treated by clinical haematologists rather than medical oncologists. They also wrongly state that only intermediate and high-grade non-Hodgkin’s lymphoma of large-B cell type can be cured with chemotherapy, and ignore T-cell lymphomas and the highly curable Burkitt’s lymphoma. They neglect to mention the significant survival benefit achievable with high-dose chemotherapy and autologous stem-cell transplantation to treat newly-diagnosed multiple myeloma [4]. In ovarian cancer, they quote a survival benefit from chemotherapy of 11% at 5 years, based on a single randomised-controlled trial (RCT), in which chemotherapy was given in both arms [5]; however, subsequent trials have reported higher 5-year survival rates. In cancers such as myeloma and ovarian cancer, in which chemotherapy has been used long before our current era of well-designed RCTs, the lack of RCT comparing chemotherapy to best supportive care should not be misconstrued to dismiss or minimise any survival benefit. In head and neck cancer, the authors erroneously claim the benefit from chemotherapy given concomitantly with radiotherapy in a meta-analysis to be 4%, when 8% was in fact reported [6].

    The authors do not address the important benefits from chemotherapy to treat advanced cancer. Many patients with cancers such as lung and colon present or relapse with advanced incurable disease. For these conditions, chemotherapy significantly improves median survival rates, and may also improve quality of life by reducing symptoms and complications of cancer.”

    Steve Novella debunks the claim that the majority of medicine is not evidence-based here:

    http://theness.com/neurologicablog/index.php/how-much-modern-medicine-is-evidence-based/

  34. SensibleScientist

    What Mr. Gavin said above…maybe you should read the papers as well as citing them?

  35. Chris the Practicalist

    “If you believe it’s the FDA stopping the data from being released then go ahead and contact the FDA and pressure them into releasing that data. When the data is released then perhaps concerns around efficacy will be answered.”
    What makes you think that the FDA can be trusted? Do you think that Dr.B might be a little distrustful of the organization that has been trying to steal his invention? There appears to be a heavy disconnect between human wellbeing and profits that has been clearly displayed by the FDAs efforts to attack and debunk Dr.B. When you talk about the costs that Dr.B is charging for his apparently inexpensive procedure, you have to take into account the fact that he does not get government funding and is under constant legal expense strain.

    I think that Dr.B is trying to keep his invention under his control because there is no evidence that suggests he can trust the FDA to act in the best interests of the public. In fact there is significant evidence that if the FDA did gain control of his invention that they would use it profit as much as possible and continue their protocol of money first, people… when it is necessary for PR.

    Also I wanted to point out that you frustrate me and everyone else when you decide that there is too much information(evidence) for you read on your blog, so you tell us that you don’t have time to read it instead of maybe saying you will get back to it later perhaps? Anyway….

    Here here for privatized medicine….with government regulations and strict conflict of interest separation!😀

    • Chris, even if Burzynski’s treatment did work, it’s not his “invention”. The drug he uses, and calls “antineoplastons”, has been trialled for cancer (unsuccessfully) as far back as the 1950s and is manufactured as an orphan drug by “big pharma”.

      Also, evidence that FDA is trying to steal it? If it’s the ridiculous claims made in “Burzynski the Movie”, be aware that these are made based on a patent application on the drug made by a scientist independently researching the drug (again, twenty years ago, and without success). The application (20 years old) declares “government interest”, which has been interpreted to indicate government involvement, but it really just means the researchers may have been partially funded by government grants (like many thousands of scientists are). The claim that this means the FDA want to patent the treatment is at best very flimsy, and at worst, conspiracy theory fantasy.

    • Also, let me add that Burzynski is the very worst of privatised medicine, whether his treatment works or not. You don’t think that Burzynski profits massively from his practise? Don’t make me laugh. He’s a shameless profiteer whichever way you cut it.

      Any talk of Burzynski being some sort of courageous white-knight, championing patient care over money, is preposterous. Even if – EVEN IF – we were to accept his treatment worked.

  36. Chris the Practicalist

    I’m saying that Dr.B is a smart person, which means yes he is profiting off of his, well you don’t like the word invention, patented product for the proportionality HIGHLY successful treatment of cancer. I would like to say that I do not trust the FDA or any corrupted, that is heavily influenced by the income of those that they are meant to have no influence from, organization and think that any organization with as much power as they wield should be not be allowed to have the sole say over whether or not a drug is successful in drug trials. My point is the FDA does not want any medicine privatized because they are not structured to make any money on it. Dr.B’s situation slipped through their cracks and has escaped their clutches so they make every effort to discredit him so they can can a slice of the pie, or all of it. Why would they fight him tooth and nail to keep him from being legitimized other than the fact that they don’t get anything out of this? As others have said in this blog, they didn’t fight other drugs as strongly because they had the capability of getting some action out of the profits of the companies that manufacture them.

    I do think that Dr.B found the loophole.
    Definition of the loophole
    -He discovered and patented a treatment.
    -The treatment has successful results.
    -He has not conceded his treatment to mindless corporate profit motive.
    -He plays by the rules of the state, like with marijuana in California.

    Essentially his loophole shows how the strength of the FDA’s monopoly power can be threatened and the FDA knows that. I like to think Dr.B knows that. People with monopolies like to keep them and squash chances of changes to them.

    Also a theory why marijuana is illegal:
    The FDA makes a lot of money raiding businesses, growers, and shaking down private citizens in relation to marijuana ONLY because marijuana is illegal. If marijuana was legal then they would lose all profits from such raids and I firmly believe that the value of marijuana would demise tremendously because of how simple it is to grow marijuana and the mass quantity you receive. Grow a plant outside some time and you will see what I mean. Anyone can grow pot and any market for it will be minimal.

    Here here for privatized medicine….with government regulations and strict conflict of interest separation!

  37. As I’ve said before, I believe Burzysnki tends to get in trouble with the law because he is in the habit of breaking it. If the FDA are trying so hard to suppress him, they’ve not been doing a very good job of it, given that he has been able to carry out his clinical trials on ANPs for over thirty years without the publication of meaningful data. The FDA don’t seem to have done very much to regulate these trials during all this time.

    As I said earlier in this comment thread – if as you believe, his treatment is ‘HIGHLY’ successful, then he should be publishing his data properly and should be open about his methods for the good of humanity.

    As has already been pointed out, the antineoplastons treatment is not an ‘invention’ of Burzynski’s and has not been shown to work. Sodium phenylbutyrate is an orphan drug and has been trialled by others.

    Furthermore, it isn’t merely the FDA who are bringing up the various illegal practices of the Burzynski Clinic, but also the Texas Medical Board, former patients, and many concerned members of the public from all over the world.

    Patients who have criticised the clinic include Wayne and Lisa Merrit, who received threatening emails from Marc Stephens as a result. Incidentally, Stephens appears to still be running the Patient Group, despite the Burzynski Clinic publicly distancing themselves from him on 29th November 2011 (following the well publicised threats to British bloggers).

    Another former patient, Lola Quinlan, is taking Burzynski and his companies to court, seeking damages for negligence, negligent misrepresentation, fraud, deceptive trade and conspiracy. She says they failed to disclose that her treatment was part of a clinical trial and charged her $500 per pill for drugs she could buy elsewhere for a fraction of that price.

    I have no desire to frustrate anyone and I do try to respond to comments properly but Judith’s were rather lengthy and strayed from the point somewhat. Nevertheless, I did try to answer them as far as was relevant. If you think I need to respond further to Judith then let me know specifically which point I need to answer.

    In the spirit of not frustrating you, let me say that I do not have any plans to grow marijuana although I realise it would probably be reasonably cheap for me to do so. This doesn’t mean that the Burzynski Clinic aren’t acting illegally and unethically or that antineoplastons are a proven and effective cancer treatment.

  38. Chris the Practicalist

    I want to relate Dr.B’s situation to marijuana in the USA because I think they are both similar in the eyes of the FDA. Both are potentially cheap treatments that have medical health benefits. However the FDA has little or no power over both treatments so they fight to discredit them and will do so until they can profit off of the treatments.

    There is conclusive evidence that marijuana has medical value in a plethora of ways. I will focus on 2 clear cut ones.
    -It gives you the munchies plain and simple… It helps people that do not have a desire to eat eat. Everyone who has tried pot can attest to this.
    -Multiple sclerosis, obvious http://www.youtube.com/watch?v=NEOoa6Q4Bds
    Why would the FDA say “At this time, however, neither the medical community nor the scientific community has found sufficient data to conclude that smoked marijuana is the best approach to dealing with these important medical issues.” ? Who cares if it is “the best way,” CLEARLY it has a dramatic effect so why not say it has medical value???? I know why, they have absolute power over all drugs/medicine in this country so they can do whatever they want. What they want is to say that Dr.B and marijuana do not have any medical value and they want to discredit them any way possible because it is financially in their best interest to do so. I cannot guarantee that Dr.B isn’t some kind of con artist more brilliant than all of the government agencies that have tried to discredit him, but I can say his situation is very similar to marijuana..

    By having Dr.B’s treatment discredited they are able to continue to profit on garbage cancer treatment like chemo. By having marijuana discredited they are able to profit off of drug busts and have been trying to turn out a drug that uses the health benefits of marijuana to sell to the public in a CONTROLLED fashion through pharmacological companies…Marinol… a little hypocritical? http://www.justice.gov/dea/ongoing/marinol.html
    The price of marijuana is around $20-$15 a gram in California. Do people complain about the price because it can be produced much cheaper than that price suggests? Yes, just like Dr.B’s treatment, but at least they can buy it. That is what is really sad about the FDA’s power over treatments, when they don’t want it to have credit they can do so and drive the price through the roof in that process. After all, economic stimulation is what the government is after right?

    • I understand that cannabis exerts pharmacological effects and that it’s reasonably cheap to grow. That isn’t what this post is about. I have also said in a previous comment that I don’t agree that the FDA are suppressing Burzynski. On the contrary, I think it’s scandalous that they have allowed him to continue with the ‘clinical trials’ for decades without publishing meaningful data.

      I also think perhaps you are a little confused about what Burzynski’s treatment actually is. To put it bluntly: it is chemotherapy. It just isn’t always described as such. Not only are ‘antineoplastons’ in effect a conventional drug, he also uses well known chemotherapy drugs.

      I am not a US citizen (in fact the post you have commented on was about an email to a British newspaper). I am therefore not particularly well versed in the roles of the various regulatory authorities in the US. Could you be confusing the FDA with the DEA?

  39. Chris the Practicalist

    I mean toxic chemotherapy by chemo. And yes I did confuse the dea for the fda. Although my point stands about the hypocrisy of approving a drug based on a plants fruit, said to have no medical benefits by the dea.

    I will agree that you are right to say that it is unethical to promote a treatment that has not been “officially” shown to work based on the FDA’s rules if it is implied that those rules make it absolute that the treatment is valid. However doing things in unethical, yet legal ways, is the American way.

    I just wanted to voice my disapproval of the state of medicine in the USA and I applaud the fact that the way the laws in the USA are set up makes it so Dr.B is able to do what he does. I do think the separations of power need to be reformed and objectivity needs to be implemented, but it is a complex issue.

    In conclusion, you are correct to say that your newspaper is acting unethically by promoting the fundraiser for an invalidated treatment, but I disagree with the bases for how the treatment is to be validated. I do think that the way the system is set up to validate medicine makes it so there is a heavy conflict of interests and has a corrupting influence on the medicines that are validated.

    Here are a few articles on cherry health benifits that you probably didn’t know about thanks to the FDA.
    http://www.lef.org/magazine/mag2006/mar2006_cover_cherries_01.htm
    http://www.whole-food-supplements-guide.com/nutritional-benefits-of-cherries.html

    Here here for privatized medicine….with government regulations and strict conflict of interest separation!

  40. Burzynski is an M.D., a scientist. Why is he so afraid of the rest of the scientific community seeing the results of his so-called “cure”? Like every other clinical trial that isn’t bs, results are published. Its very simple.

  41. Juliet Sexton (formerly Freitag)

    I am Kyla Freitag’s mother and not only does this site have her information completely wrong, it’s offensive anyone would be so uneducated to even speak on a a patient’s case they are know nothing about. Kyla’s cancer “didn’t return” her tumor(DiPG) had used up its existing blood supply because it was encapsulated and thus drew blood off her brain which caused her to go into a coma and her subsequent death. The tumor in fact had not grown and areas had started to die. We simply ran out of time. Seriously get your facts straight if you are going to pretend to be an informative site.

    • I’m sorry to hear that you’re upset about what has been written about Kyla, but I think you have posted here in error. I have never discussed her case (though her name was mentioned in this comment thread, by Judith, quoting the Burzynski Patient Group).

    • Unfortunately, Burzynski always seems to have some excuse as to why his patients ultimately die….in this case, that particular biological explanation doesn’t make a whole lot of sense – typical Burzynski-apologist.

  42. Ashley Stults

    Dr.Burzynski cured my friend of an inopeable malignant brain tumor ..She had been handed her death sentence.And then found Dr.B…. He is an Earth Angel. At the very least .And I have a feeling that all involved in Sabotaging him and keeping him from being able to save so many lives,FDA,the government,pharmaceutical companies All the MONEY HUNGRY GREEDY BASTARDS INVOLVED IN DESTROYING HIM OVER THE LAST FEW DECADSE…I AM THINKIN THERE IS GONNA BE A SPECIAL PLACE IN HELL FOR YOU.You are Murderers.

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