Emails regarding the Burzynski Clinic not published in The Observer

UPDATE (03/12/11) Stephen Pritchard (The Observer Readers’ editor) has emailed to say

Thank you for your email. I have examined this issue closely and have written a column on it for Sunday. Thank you for taking the trouble to write.

UPDATE (04/12/11) Stephen Pritchard’s column (published today) has upset me and many other bloggers. I intend to address the issues in a new post and new email tomorrow when I have time.
__________________________________________________

As discussed in an earlier post, last Sunday’s Observer published a moving piece written by the uncle of a four-year-old girl with an inoperable brain tumour, promoting a fundraising campaign set up to pay for treatment at the Burzynski Clinic in Texas.

I wrote an email to The Observer’s readers’ editor, describing some of the controversy surrounding the clinic, explaining my concerns about the uncritical nature of the article and suggesting they run an informative and balanced follow-up piece. I have so far had no reply.

But I was not alone…

The good news is that they did reply to another correspondent, stating that they were carrying out further research into the story and the clinic. They said they were planning to print his letter. Their latest email (28/11/11) indicates that the readers’ editor will ‘examine the issues with great thoroughness’.

The bad news is that no follow-up piece has yet appeared and that his letter was edited (EDIT 28/11/11 his response to this may be read here). They also seem to have failed to reply to letters from Tannice, Adam Jacobs of Dianthus Medical (who has decided to take the matter up with the PCC) and Professor Dorothy Bishop.

I have decided to publish the emails here in full.

The following email, from Mr M Warren (already here on his blog) appeared in today’s newspaper (with the exception of the parts I have highlighted in red and the addition of those highlighted in blue):

I have had the Observer delivered each Sunday for some forty years and therefore feel entitled to describe myself as a loyal reader but. I was concerned to see the article entitled, ‘The worst year of my life: cancer has my family in its grip As stars came out to help little Billie, my cynicism melted away (Focus) in the 20th November edition. It is entirely appropriate for you to raise awareness of the dilemmas faced by the families of young children suffering from life-threatening conditions such as Billie Bainbridge. What concerns me is the way in which the article appears to give uncritical support to the treatment offered by the Burzynski Clinic. There is much evidence to suggest that this US clinic operates on the fringes of medical practice and does little more than offer false hope at a high price. A look at the Cancer Research UK website would have confirmed this. I fear that the consequences of this article will be to raise unrealistic expectations in other cancer sufferers and their families and line the pockets of charlatans. I look to the Observer to provide balanced and informed articles. I hope therefore, that a future edition of the paper will address the issues I have raised.

The following email was from me and had previously been published as a comment here:

I write to express concern at the recent article concerning the Billie Butterfly Fund and the Burzynski clinic.

I think the article itself was very honest, moving and well written. My heart goes out to Billie, Luke and all the family who have found themselves in such a desperate situation. I think it’s wonderful that Luke has had so much support from his media contacts and celebrities and wish them all well.

However, I have some strong concerns about Burzynski’s clinic. While I don’t believe the article was inaccurate as such, I do feel it was misleading in that it did not report the controversy surrounding this clinic. For example, Burzynski has been carrying out clinical trials on ‘antineoplastons’ for over thirty years and there is still no clear evidence of efficacy. Antineoplastons are not approved by the US FDA. There have been no randomised controlled trials demonstrating their effectiveness ever published in the peer reviewed scientific literature.

These issues have been written about widely online (including on my own blog: https://josephinejones.wordpress.com/2011/11/23/controversy-surrounding-burzynskis-pioneering-cancer-therapy-should-be-reported-in-newspapers/) but as far as I am aware, have never been discussed in the mainstream media. I believe this needs to change.

I think The Observer should publish a balanced and informative follow-up article, pointing out some of the problems with the Burzynski Clinic. To this end, I have also been in touch with Sense about Science and Cancer Research. I hope that perhaps they will be able to help, for example by writing an objective and informed press release.”

Dorothy Bishop’s email, also published here, said the following:

Dear Mr Pritchard,

I am writing about a story that featured in the Observer magazine last week (Luke Bainbridge, The worst year of my life: cancer has my family in its grip), concerning attempts to raise £200,000 so that a child with cancer could be sent to the USA for treatment. On the surface, this looked like a positive story about the willingness of celebrities to donate their time and efforts in an attempt to overcome a tragic situation.

The implication that many readers might draw is that it is necessary to go to the USA because the NHS lacks the funds for such an advanced treatment. In fact, the treatment is not recommended by any cancer experts in either the UK or the USA. The background is fully explained in this blogpost from Cancer Research UK: http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/. The reason the treatment is available in the USA appears to be because ethical regulation is far laxer there than in the UK. Any person who wishes to sell an unproven treatment to patients can do so by describing it as a ‘clinical trial’. I find it tragic that this loophole in US regulation allows unscrupulous practitioners to exploit highly vulnerable individuals, and am dismayed to find the Observer endorsing this practice.

Yours sincerely,

(Professor) Dorothy Bishop

The email from Tannice was published on her blog, and said:

Dear Observer,

Regarding: The worst year of my life: cancer has my family in its grip – http://www.guardian.co.uk/theobserver/2011/nov/20/a-family-gripped-by-cancer

As the daughter of a man with cancer I’m always interested to read about new therapies and scientific breakthroughs into cancer treatment. However, I felt I must write to you about the article by Luke Bainbridge, the uncle of Billie of Billie’s Butterfly fund.
I feel that the publishing of this article without any context is irresponsible and dangerous and that you’re actually missing a bigger story. Whilst I’m thrilled that so many celebrities have got behind Billie’s cause, I am saddened at what and who the money is going to. If only it was going to a better cause than this clinic.
Irresponsible and dangerous
Dr Burzynski has not, so far, published any results for his trials; trials conducted over thirty years. His studies have not been published or peer reviewed. Here’s what Cancer Research UK has to say about his research:

Some people promote antineoplaston therapy as a cancer treatment. But available scientific evidence does not support claims that antineoplaston therapy is effective in treating or preventing cancer.

Although Dr Burzynski’s own clinic have reported positive results for these trials, no other researchers have been able to show that this type of treatment helps to treat cancer. Other researchers have criticised the way the Burzynski Clinic trials have been carried out. Despite researching this type of treatment for over 35 years, no phase 3 trials have been carried out or reported. (My emphasis) (Retrieved 25 Nov from http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/what-is-antineoplaston-therapy )


Without any context to this article, others whose children are stricken with similar afflictions are likely to want to get the treatment that is talked about in the article. This is false hope. Often, these alternative therapies are undertaken by desperate families who eschew conventional treatment in favour of something with little to no evidence of efficacy.
Quackwatch goes into the science behind why it’s bunkum (and Burzynski’s credentials, or lack thereof) in great detail, here:
The bigger story
  • The FDA in the US have not approved the use of antineoplaston therapy for use in humans as a drug treatment. Burzynski is using them in his own trials, for which he is charging phenomenal amounts of money, without having proven anything. These are bogus trials: set up purely due to the fact the treatments are unlicensed, and so cannot be legally administered other than in a clinical trial.
  • (From Wikipedia) “Burzynski’s use and advertising of antineoplastons as an unapproved cancer therapy were deemed to be unlawful by the U.S. Food and Drug Administration (FDA) and the Texas Attorney General, and limits on the sale and advertising of the treatment were imposed as a result. In 1994, Burzynski was found guilty of tax insurance fraud for filing a claim for reimbursement by a health insurer for an illegally administered cancer treatment.”
  • There’s a film and a book that are convincing people around the world that conventional cancer treatments don’t work. This is highly dangerous and characteristic of alternative medicine purveyors who are doing their best to undermine the efforts of real scientists and doctors who are fighting against the horrendous illnesses we call cancer. Stating that there’s only one real cause of cancer is another claim that’s characteristic of quacks, yet it is known that cancer isn’t actually just one disease.
I urge you to write another article, with the facts about Burzynski laid down for all to see. It’s a difficult subject, especially given that many of his patients are children. However, I believe that it’s extremely important that people aren’t mislead by heart-wrenching articles about the victims of the cruelty we call cancer. There’s a wider, more important issue at hand: this man is making money from people’s grief, vulnerability and ignorance.
If you need more context on this, there are blogs on the subject all over the place – something the mainstream press is missing out on. This one gives a very good rundown of extra links, for context.
Yours faithfully,
Tannice

Mike Wake  also wrote to the Observer (see comment below):

Dear Readers Editor
I am writing to you because this piece in the Observer yesterday has no comments provision, and thus no space to point out that the Burzynski Clinic is at best controversial and at worst a cynical and manipulative scam using pseudoscience to target the vulnerable. See the Wikipedia entry here and some more details here . A Google search will quickly show many views, both pro and anti, which should be enough to be cautious about such unequivocal endorsement, with the attendant risks of misleading both the contributing public and susceptible sufferers from this dreadful condition.
It must surely be wrong for such a story, harrowing though it is for those involved, to be allowed to stand with no opportunity for critical comment.
Mike Wake

Fiona Gilsenan emailed on 28th November to say:

Dear Mr. Pritchard,

I was surprised not to see follow-up reporting this weekend in regards to your touching article ‘The Worst Year of my Life’ from Nov. 2nd. The original article as written presented the tragic plight of parents desperate to save the life of their little girl, who is suffering from a life-threatening cancer.

I work in cancer prevention here in Canada and am frequently asked about various maverick ‘cures’ for cancer that are somehow being suppressed by the cancer ‘industry’ and so only available in private clinics in Mexico, Germany, the US, and elsewhere. In our public health care system, we rely on evidence-based medicine to make decisions about treatment and care, just as does the NHS in the UK. Dr. Burzynski’s treatment does not meet the accepted standard of evidence for efficacy or even safety in treating cancer, which is why it has not been adopted as a treatment option for patients here.

The Burzynski Clinic has received plenty of media attention, so I am surprised that your reporting did not delve into whether or not the huge sums of money being raised for this child were for a genuinely promising clinical trial. Burzynski has been running these trials at great expense to his patients for 30 years with no convincing results. A simple Wikipedia check would verify this, not to mention the many articles that have been written by medical and scientific experts, including Cancer Research UK.

One cannot help but sympathize with the parents of ill children, but articles that in effect uncritically promote such dubious treatment do a tremendous disservice not only to the families and donors whose hopes are raised in vain (and whose savings are wiped out), but also the thousands of legitimate cancer researchers, physicians, and caregivers who are working hard to bring evidence-based care to patients. I hope you will more fully inform your readers of the issues involved in this case, and in any similar heartbreaking stories that cross your desk in the future.

Sincerely,

Fiona Gilsenan
Victoria, BC
Canada

If anyone knows of any more such emails, I would be happy to add them to this post. If I do decide to edit them in any way – for example, if I feel they are potentially libellous, then I will explain my reasons.

22 responses to “Emails regarding the Burzynski Clinic not published in The Observer

  1. Pingback: Stanislaw, Streisand and Spartacus | Josephine Jones

  2. Pingback: Controversy surrounding Burzynski’s ‘pioneering’ cancer therapy should be reported in newspapers | Josephine Jones

  3. I’ve not yet had a response from the Observer. I will publish it on my blog if I do.

  4. I emailed the Observer Readers Editor (copied to Andy Lewis, to whom we all owe a massive debt) at 12:18 on 21st November as follows:

    Dear Readers Editor
    I am writing to you because this piece in the Observer yesterday has no comments provision, and thus no space to point out that the Burzynski Clinic is at best controversial and at worst a cynical and manipulative scam using pseudoscience to target the vulnerable. See the Wikipedia entry here and some more details here* . A Google search will quickly show many views, both pro and anti, which should be enough to be cautious about such unequivocal endorsement, with the attendant risks of misleading both the contributing public and susceptible sufferers from this dreadful condition.
    It must surely be wrong for such a story, harrowing though it is for those involved, to be allowed to stand with no opportunity for critical comment.
    Mike Wake

    *This link was to the Quackwatch site
    To date I have had no acknowledgement or reply.

  5. I saw the rather muted/neutered letter in the print Observer today. Why they felt they had to edit out some of the comments, and why they chose not to publish the letter from Professor Bihop is beyond me.

    If the Observer does not adequately adress their uncritical coverage of this, I will deprive them of £2.20 of my hard earned lollies each week, and look elsewhere for reading material.

  6. Given the Observer’s role the MRI-autism scare I would have withdrawn my subscription from them years ago, if I had had one.

  7. There is a more recent letter (here http://davenomiddlenamecurtis.blogspot.com/2011/11/letter-to-observer-re-burzynski-clinic.html) from Professor David Curtis
    Consultant and Honorary Professor in Psychiatry. He says:

    Hi.

    I think you should take a really serious look at what has gone on around the publication of this article. Of course it’s a moving account of knowing a child with cancer. But the whole emphasis is on people clubbing together to allow her to receive some treatment which is unavailable on the NHS. The overall impression is horribly misleading, which is that there is some expensive and sophisticated treatment which is for some reason inaccessible through the NHS. Actually, the obvious reason it’s not provided by the NHS is that it plain doesn’t work. Unlike a number of treatments which are available on the NHS (e.g. herceptin), the chemicals used by this clinic are fairly simple and easy to manufacture and if there was any suggestion that this was effective treatment the NHS would be providing it or at the very least there would be clinical trials proceeding in the UK which would be available to NHS patients.

    The awful truth is that all the well-meaning people who have raised money for the cause have been taken in by the clinic’s publicity material. The fact that the Observer has also been taken in makes things so much worse. The NHS is facing exceptionally difficult challenges and the last thing we need is a respected, liberal newspaper contributing to the impression that the NHS provides a second-class, limited service and that “proper” treatments are available in the US for those who have enough money.

    I know that personal issues and emotions will make this difficult, but please try to unpick what has happened and undo the damage you have done.

    Yours sincerely

    – David Curtis

  8. As a doctor, mother and psychotherapist I too was somewhat alarmed at the uncharacteristically uncritical tone of the Observer article. I knew nothing of the clinic, but that which I have discovered from subsequent research has not filled me with confidence.
    Given the Observer’s proud record of seeking out truth and resisting attempts to silence those who disseminate truth, I would expect prompt publication of an article about the Burzynski clinic, written by one of the team’s good investigative journalists.

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  15. The Observer have still not replied to my email.

  16. Tannice Pendegrass

    Hi! Just received a response from the Reader’s editor, Stephen Pritchard, who says he’s doing a column on it for tomorrow’s paper. Look forward to reading that!

  17. The article has been printed. It makes uncritical mention of the claim that there are patients who have been treated by the clinic and survived.

    Sacre bleu. There have been people who have been run over by trucks and survived too.

    As a member of the brain cancer community, I’ve noticed that in those cases where you can actually get the name of one of the clinic’s survivors of a deadly cancer, you can usually google that name and find an obituary.

  18. Pingback: The Observer fails once more to address concerns regarding the Burzynski Clinic | Josephine Jones

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