Not Everyone Cares About Cancer

Sadly, some people just want to scam vulnerable patients and families.

Blackpool Tower, image by Ingy the Wingy

In an act of misplaced charity this evening and tomorrow evening, the popular comedian Peter Kay is performing in Blackpool, raising money for Billie Bainbridge, an extremely ill four-year-old girl with brain cancer.

Her situation is terrible. Her doctor described her tumour as of the worst kind in the worst possible place, and she is likely to die within two years. So, of course, when the family became aware of an apparently pioneering treatment in the USA, they simply had to do everything in their power to get there, despite the treatment costing £200,000.

Peter Kay is not the only one helping the family – there are a number of celebrity connections being called upon, and the local community has come together to raise as much money as possible. There is also a website devoted to their cause, which, as of this moment, states that £174,557.48 has been raised. But where exactly is this money going?

I first became aware of the family likely being the victims of a cruel scam when I saw Ben Goldacre trying to get people to tweet Peter Kay en masse to bring his attention to what seems to be fraud. Then I saw a damning article by ‘Le Canard Noir’ on The Quackometer which deserves some solidarity because the writer has been threatened.

After a series of posts, Le Canard comes to this conclusion:

… the £200,000 being raised looked like it was earmarked to send little Billie to a clinic in Texas to enrol in a trial that was using an unproven and questionable form of urine-based treatment.

I wrote about my concerns with this and how this might be giving false hope to a vulnerable family and how it may be funnelling money to an unproductive cause. Dr Burzynski, who runs the clinic, is not allowed to treat people with cancer with his unproven antineoplaston therapy. His is, however, allowed to enrol people in trials. And he does so, and charges them hundreds of thousands of dollars. He has been doing this for over 30 years without producing the substantial evidence from these trials that would convince the scientific community that he has an effective and safe treatment.

After having published these concerns along with another blogger, Josephine Jones, the probability that this is all a heartless scam increased when Le Canard was sent a series of emails demanding him to delete his posts on the supposed basis that they were libellous. However, the unprofessional, threatening tone of the emails, as well as the fact that their author, Marc Stephens, is labelled as working in ‘Marketing & Sponsorship’ on Burzynski’s website, suggest that these are illegitimate scare tactics. Le Canard is not the only one who has been subjected to this treatment.

‘Dr.’ Burzynski is not only slowly and painfully destroying the lives of Billie’s family by giving them false hope with a false treatment, he has committed an act of great shame against every single person who has devoted time and money to the family’s cause. As Le Canard astutely summarises in another post:

It’s a powerful media myth that special American cancer clinics can provide miracle cures for cancer when the NHS cannot.

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Update (25/11/11): Cancer Research UK weighs in on the issue.

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