Dear Dr Hilary ................

This morning, ITV's Daybreak ran a feature on the efforts of the parents of a five-year old girl who is suffering from a rare form of brain cancer, to raise money to pay for treatment at the Burzynski Clinic in Texas. Present in the studio, along with the presenters, were the girl, her father, and Daybreak's Health Editor, Dr Hilary Jones. A YouTube clip of the interview is available here (poor sound quality unfortunately). In the interview, Dr Jones is asked for his opinion on the treatment. He describes it as 'pioneering'. He goes on to say that, "Pioneers in medicine tend to get a rough ride". He also relates an anecdote about someone he knows who is currently at the Burzynski Clinic and is receiving 'excellent treatment'.

I am left wondering what messages this interview sends out to viewers, some of whom will know of cancer sufferers. My conclusions are:

•  a treatment which is not available in the UK must be a treatment worth having.
•  a treatment which is 'pioneering' and 'experimental' is a treatment worth having.
•  a treatment which is not validated by the relevant medical authorities is a treatment worth having.
•  a treatment which demands enormous personal and financial sacrifices is a treatment worth having.
•  parents are entitled to try anything possible to find a cure for their children.

I believe none of these stand up to close scrutiny.

In my view Dr Jones has done a disservice to the sufferers of cancer and their friends and relatives. It isn't surprising when parents have an emotional response to the situation they find themselves in. It isn't surprising when the media use that emotional response to produce a piece which will grab the attention of viewers/readers.

I find it surprising that a doctor should do no more than amplify that response to the exclusion of all else. Readers of this and other blogs and followers of #Burzynski on Twitter will be well aware of the issues surrounding this 'pioneering' and 'experimental' treatment. If you need further information follow these links:

Quackometer - Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV

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

The 21st Floor - Burzynski: A Small Victory

The Latest From The Observer

Received this evening (3.12.2011 - 7.20 pm)

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.
Best wishes,
Stephen Pritchard
Readers' editor
The Observer

The Observer and The Burzynski Clinic

Very few people reading this blog will be unaware of the current furore involving the Burzynski Clinic. Twitter and Skeptic blogs worldwide have been active ever since this story appeared in the Observer on Sunday 20th November 2011. For many people, mention of the Burzynski Clinic was an immediate red flag. It wasn't the first time that this organisation had come to the attention of bloggers. Saul Green, writing in Quackwatch, identified problems five years ago. The reaction of tweeters and bloggers was hardly surprising - except, it seems, to the Observer. Publication of the article produced a flurry of emails to the readers' editor. Josephine Jones has recorded some of them on her blog. As you will see from the list, some eminent bloggers contacted the Observer  yet most did not receive a reply and only one was published in Readers' Letters on Sunday 27th November 2011.  It was my email which was published (heavily edited), and I also received a reply. Many people considered this response to be inadequate - Ben Goldacre described it as a 'one tiny letter'!

Why this feeble response from the Observer? It is a newspaper with a long tradition of campaigning journalism and is the oldest Sunday newspaper in the world. Along with its sister newspaper The Guardian, it has been involved in covering controversial issues such as wikileaks and phone hacking. The Burzynski Clinic would appear to be the sort of issue that the Observer/Guardian would relish covering. It has all the ingredients for an in-depth investigation.

• highly suspect science and dubious medical procedures
• exploitation of vulnerable families
• unreasonable financial costs
• threatening emails to bloggers
• attempts to limit freedom of speech

The hard work has been done for the scientifically challenged. The Josephine Jones blog has a handy list of useful sites. Yet still the Observer/Guardian sees no evil and reports no evil.

Does the reluctance of the Observer to become involved result from its inglorious past in reporting scientific controversies? They made an awful mess when reporting supposed links between autism and the MMR vaccine. Ben Goldacre takes them to task here. (The original Observer article has been removed from their archive). Perhaps the bruising they took over that issue has conditioned them to avoid the scientific arena. In today's Guardian there is a small article featuring Rhys Morgan, one of the bloggers who has been on the receiving ends of threats from the Burzynski Clinic. It has taken over a week for the Observer/Guardian to recognise the existence of a controversy which they themselves initiated.

What a strange state of affairs. The newspaper I've read for forty years ignores a big issue happening on it's own doorstep. The editorial staff would do well to take a look across the Atlantic and see how it should be done.

Update
Rhys Morgan now has a page on the Guardian's Comment is Free. One comment sums up my position perfectly:

Excellent work, Rhys. Now let us hope our professional journalists get off their collective backsides, rather than allowing the science blogosphere to do all the lifting and carrying (and the receiving of frankly sinister threats from this organisation). If Burzynski has nothing to hide, let him come forward with the complete data for peer review into the efficacy of the treatment his 'clinic' offers.

A (Very Brief) Reply From The Observer

This is The Observer’s response to my latest email:

As I wrote to you last week, we take the matter very seriously. It is now in the hands of Stephen Pritchard, our readers’ editor, who, I assure you, will examine the issues with great thoroughness.

Best wishes

Obviously this is not the response I was hoping for but I am cautiously optimistic that The Observer will fulfill its obligation to provide even-handed, well informed  journalism. For the moment I will give them the benefit of the doubt. I hope my optimism is not misplaced.

Meanwhile, anyone who has not read Rhys Morgan’s blog , “Threats from the Burzynski Clinic“, should follow the link. He details the threats he has received from Mr Marc Stephens, a spokesman for the Burzynski Clinic. Rhys asks for the support of bloggers and tweeters. If you are in a position to help, please do so.

Dear Observer Part 2 ................

Dear Observer

Thank you for publishing my letter regarding the Observer article on the Burzynski Clinic. I am grateful that you gave me the opportunity to raise some of my concerns regarding this organisation. However I am compelled to draw your attention to my concern about the level of the Observer’s response to the issues raised. You cannot be unaware of the ongoing debates on Twitter and in the blogosphere about the Burzynski Clinic. As well as consideration of the medical and ethical issues involved, some of this debate is about the responsibility of the Observer to redress the balance with regard to this matter. There is a perception that the Observer, albeit unwittingly, has given a validity and respectability to an organisation which is exploiting the vulnerable. Many individuals have contacted the Observer expressing their concern, but the printing of one letter does not reflect the disquiet felt amongst the skeptical community. Should you wish to have some measure of this disquiet I can refer you to the excellent blog of Josephine Jones who is maintaining a list of all blogs dealing with this matter. Andy Lewis, Ben Goldacre and David Colquhoun  have all made eloquent and persuasive contributions which deserve wider dissemination.

I am still hopeful that the Observer will fulfil what I believe to be its responsibility for providing its readership with an informed and balanced view of the issues raised in the original article.

Mike Warren