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.
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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:

http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/burzynski1.html

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.

• Burzynski’s staff has a history of shutting down criticism: actions not of a scientist but those of someone with something to hide. He’s currently pursuing Andy Lewis, known as @LeCanardNoir. You can read the kind of threats their PR man, Marc Stephens, has been making towards Andy and his new baby and partner, here: http://www.quackometer.net/blog/2011/11/the-burzynski-clinic-threatens-my-family.html because of this article, critical of your piece: http://www.quackometer.net/blog/2011/11/the-false-hope-of-the-burzynski-clinic.html

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.

https://josephinejones.wordpress.com/2011/11/23/controversy-surrounding-burzynskis-pioneering-cancer-therapy-should-be-reported-in-newspapers/

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.