This will be a brief post, it’s a few days overdue.
On Monday 28th November, 17-year-old sceptical blogger Rhys Morgan posted some correspondence he’s had with Marc Stephens, a man claiming to represent Dr. Stanislaw Burzynski, Burzynski Clinic, and Burzynski Research Institute – read his post here. It was threatening and vindictive: it contains threats of libel and a nasty google images view of Morgan’s house.
The Burzynski clinic has received some attention as it is “treating” some high profile cancer cases as this story from the Observer illustrates. Some of those being treated at the clinic have received donations from celebrities as a result of the prohibitively expensive cost of the treatment (here is an example). However, there is currently limited evidence that the antineoplaston treatment pedalled by the Burzynski clinic actually works. The treatment has yet to be FDA approved, having failed to finish phase II clinical trials due to some sort of falling out between the NCI and Burzynski from 1991-1995.
I’ll make no bones about it, cancer is a sucky disease to put it lightly (I’ve lost 2 grandparents to it and my Mum had a tumour removed 4 years ago – she’s been lucky, I’ve been lucky). Tragically, some cancers are untreatable with current medical therapies, what treatments there are available are unpleasant. No wonder people are driven to alternative and complementary medicine, it’s what happens when we view conventional medicine has failed us. What I find galling is the number of people ready to profit from people’s misery. With this in mind I shall continue.
I think it is a wonderful and beautiful thing that the generosity of people has enabled vast quantities of money to be raised (sometimes with the help of celebrities) to try and help people get the treatment they need. However, what I do take issue with is that people’s goodwill being used to pay charlatans.
According to experts and sceptics have been voicing their concerns – Andy Lewis over at Quackometer has listed them, chief amongst them being that the clinic charges patients. Because the antineoplaston therapy is yet to be FDA approved, it cannot be described as a treatment – the clinic describes what it does as “trials”. It is highly unusual for clinical trials to be paid for by the patient. Something else which is rather worrying is that Burzynski has been to court previously for ‘violating court orders not to distribute his unapproved “Antineoplastons” in interstate commerce‘ – the case fell through (hung jury) but I feel the concern is still valid.
There have now been two pieces in The Observer from people very much emotionally involved with cancer patients who are potentially in line for antineoplaston treatment. Neither have been balanced, though to be fair they have been from the point of view of people who are deeply grateful for all the support they have received. Neither has noted the controversy regarding Burzynski’s treatment. Those on the internet, specifically Rhys Morgan and Andy Lewis, who have questioned the effectiveness of the treatment (a fair thing to do under the circumstances) have been targeted by people claiming to represent the Burzynski clinic and threatened with libel action.
My two take home messages:
1. It’s galling that people’s goodwill and generosity may be used to pay some snake-oil salesman who preys on people’s desparation.
2. Libel laws must not be allowed to stifle scientific debate, especially when people’s lives are at stake.
This has been covered better and in much more detail elsewhere, I urge to to take a look at it.
If you really want to help, donate to Cancer Research UK (I have been for years).
Post script, 5th December – Interesting info regarding Burzynski pushing conventional chemo http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynskis-personalized-gene-targeted-cancer-therapy/