What do you think? The readers’ editor on… kind hearts and a cruel illness
The Observer devoted a page to this story a fortnight ago, presenting it as a first-person piece by Billie’s uncle, music writer Luke Bainbridge, although told to another journalist. Yet what was intended as a gripping, human-interest story quickly drew a sustained attack on the paper for apparently offering unquestioning support for a highly controversial cancer treatment, known at antineoplaston therapy.
Dorothy Bishop, professor of developmental neuropsychology at Oxford, wrote to warn that Dr Burzynski’s methods are not recommended by cancer experts in either the UK or the US. “The reason the treatment is available in the US 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’.”
…Rhys Morgan, a 17-year-old blogger, also received threats after raising concerns about the trials, though his recent claim that the family merely “did some research on the internet” before deciding on the clinic was not based on any conversation with them.
…which says what exactly about the threats to him and others? [Edit to add - hey, considering the standard of some UK journalism - he could have just hacked their phones, right Observer?]
…And this is the point that is being lost in the vitriol that is flying around the internet. Undoubtedly, the Observer was wrong not to have included criticism of the treatment. A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article, but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested (“pimping” it, as one science writer so crudely tweeted).
I’ll leave the last word to the deputy editor. “We had no intention of endorsing or otherwise the treatment that the Bainbridge family have chosen for Billie. The focus of the article was the extraordinary campaign to raise money for the course of action that the family, after careful consideration of the benefits and risks, had decided to pursue. It is a story of courage and generosity involving thousands of people. Of course, it is entirely legitimate to raise issues about the Burzynski clinic as a number of readers have done, and we should have done more to explain the controversy that it has provoked. But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the Bainbridge family.”
Yes, as Hayley Stevens has written – ‘When Skepticism Is Off Target’. I agree there. And a disregard for the facts is very bad, after all.
Update – Skeptical Humanities blog: Letter to the FDA about Dr. Burzynski
If you take a look at the public record, Dr. Burzynski has assembled quite a record of getting people to raise enormous amounts of money for desperate causes that usually end in failure. In fact, every single patient that I have found in media coverage of Burzynski for the past 10 years, with a sole exception, is dead.