**UPDATE: Read this blog for the tactics someone claiming to be involved with the clinic is using to stop people writing about the Burzynski Clinic. In this instance threatening a school boy… Threats from The Burzynski Clinic | Rhys’s Blog.
Last Sunday a very sad story appeared in the Observer newspaper about a young girl with a rare brain cancer (Diffuse Intrinsic Pontine Glioma, DIPG). This is a very aggressive cancer and life expectancy is low.
The full article can be read here.
The article then goes on to say ‘Is it impossible for her to survive? No, as it turns out. Sam and Terri very quickly found out about a pioneering treatment at the Burzynski Clinic in Texas for children with DIPG.’ This pioneering treatment costs £200,000 and of course, as any parent would do, they have tried to raise the money. Comedian Peter Kaye is doing a show to help raise money and many other celebrities have helped out with fund raising efforts.
So far, so good. The problem come when you look into what the Burzynski Clinic do. An excellent full report can be found on the quackometer website here. A quick summary would be that this treatment is not approved by the US regulators, it has only been approved if part of a trial. To join this trial costs £200,000 and trials have been ongoing since 1977 and there are no good independent peer-reviewed RCT evidence suggesting it is effective. Following this post quackometer received an email demanding the post be taken down, all the posts are still there. Rather than rewrite all the excellent information already posted I suggest you take a look at the websites listed below.
This is a very sad story, some well meaning individuals and how a treatment that is still in trial (a trial that has lasted since 1977) can be sold for a large amount of money. I hope the little girl recovers, if this was my child and I thought this was the last hope even though it wasn’t proved would I try it… I would like to think not, but I suspect at that point emotion would take over and I would. It also shows the way some companies will try to stop people blogging things they do not agree with. This story will run for a bit longer I suspect.