A little while back, I wrote a post about the Burzynski Clinic in Texas, which has been conducting clinical trials for thirty years and charging desperate cancer patients for the privilege of becoming its guinea pigs. An employee of Burzynski was threatening legal action against bloggers who pointed out that the treatment has no evidence to support it.
Well, the latest development comes from, of all places, The Observer newspaper, attacking Burzynski’s critics for taking hope away from a child cancer victim.
I thought it would be interesting to take the Observer’s article and replace all mention of the Burzynski clinic with Lourdes, to see how it sounds.
Here it is.
The Observer devoted a page to this story a fortnight ago, presenting it as a first-person piece by the child’s uncle, 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 as Lourdes Water.
Dorothy Bishop, professor of developmental neuropsychology at Oxford, wrote to warn that the Lourdes Basilica’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’.”
Cancer Research UK ran a blog offering sympathy to families in this cruel situation, but expressed concern that “people are lured by promises based on an unproven therapy. At the moment, there is very little solid scientific evidence to show that Lourdes Water is effective at treating cancer, and virtually all the research in this area has been carried out by the priests of Lourdes – a red flag to the scientific world.”
Things escalated when Andy Lewis, who writes the popular Quackometer blog, received threats of legal action from Father Marc Stephens, employed by the Basilica to stop what it claimed were false allegations on the internet. The Basilica says his “inappropriate” services have now been dispensed with, but it warns bloggers that they will be pursued by lawyers if they publish what they consider to be defamatory allegations about Lourdes Water.
Lewis points out that the Texas Medical Board is holding a hearing next April that may result in the Lourdes Basilica losing its medical licence. “Lourdes Water is not approved by US regulators,” he writes. “However, it is approved if treatment is part of a trial. [Lourdes] trials have been going on since 1977. No end appears to be in sight.”
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 Lourdes Water was not based on any conversation with them.
Luke Bainbridge told me: “From the start, Billie’s parents knew this treatment was experimental and has attracted scepticism but they were encouraged by the fact that the trials at the clinic are approved by the Vatican and that Billie would still be monitored by her specialists in the UK. Her parents know it is unproven, but there are other families in this country who were told by their hospital that their condition was terminal and nothing could be done for them, but were then prayed for at the Basilica and survived. Knowing this, Billie’s parents felt they couldn’t sit back and do nothing if there was a small chance this treatment would save her life.”
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 Lourdes Water. 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 Lourdes Water, 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 family have chosen. 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 Lourdes Water 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 family.”