Everyone has been touched by cancer in one way or another. If you haven’t had it yourself, the odds are extremely high you know someone who has, and who has died from it. I’ve lost loved ones to cancer, and it’s awful; it can take years filled with tests, hope, lack of hope, expensive therapy… and in the end the odds are what they are. It all makes for desperate times for those involved, with an emotional distress level that is beyond my ability to describe.
There are people out there who claim they can cure cancer, or have therapies that can mediate it. Some of these people are simply con artists, ready to swoop in as soon as they smell blood in the water, vermin that they are. Others are honest but wrong, thinking they have stumbled on some therapy that no one else has found. However, time and again, when these alternative methods are tested rigorously using controlled, properly done studies, they are shown not to work. In general this does not stop people from making the claims, however.
In Houston, Texas, is a man named Stanislaw Burzynski. He claims he has a method for treating cancer. He calls it antineoplaston therapy. However, according to the National Cancer Institute, “No randomized, controlled trials showing the effectiveness of antineoplastons have been published in peer-reviewed scientific journals.” That’s a bad sign. Furthermore, the FDA has not approved of antineoplaston therapy for use. Also telling is that “… other investigators have not been able to obtain the same results reported by Dr. Burzynski and his team”. Yet, despite this, Burzynski charges hundreds of thousands of dollars for people to get his therapy — though he has to say they’re participating in research trials, since the FDA won’t allow him to use his ideas as an actual treatment.
Those are red flags, to be sure.
However, I am not an expert on cancer, so I rely on the advice and expertise of others. Dr. Steve Novella, who certainly is an expert both in medicine and the misuses thereof, has some choice words about Burzynski and his ideas. So does David Calquhoun, a British pharmacologist. So does — at great length and detail — Dr. David Gorski, and so does the website Quackometer (and again here as well) and so does the Cancer Research UK Science blog.
Most importantly, so does Rhys Morgan. Who’s that? He’s a 17-year-old high school student who has blogged about Burzynski, in a factually stated but highly critical manner. So what did Burzynski’s clinic do?
They threatened to sue.
In general, it’s a little unusual, to say the least, for a team doing medical research to sue someone for criticizing them. That’s because real science thrives on criticism, since it’s only through critiques that the potential errors of a particular method can be assessed — that’s why research is supposed to be published in peer-reviewed journals as well. Suing is the antithesis of that idea.
Rhys has posted the letters sent to him by Burzynski’s clinic, and it’s actually rather amazing. Being threatened with libel is no fun, but Rhys handles himself absolutely correctly and with great aplomb. The threats from Burzynski’s clinic are, um, not very polite, to put it mildly. I’ll note that the clinic has threatened to sue multiple people, including Peter Bowditch and Andy Lewis, two other bloggers who have criticized antineoplaston therapy.
[UPDATE: The clinic is distancing itself from the threats made, which it is now saying were done by an independent contractor who is not the clinic’s lawyer.]
Why is this important? Because desperate families are willing to pay the exorbitant fees charged by the clinic when loved ones are dying of cancer. It breaks my heart, but it’s also totally understandable they would do this. Who wouldn’t, if they really thought some alternative treatment might work?
In this case though, there is no credible evidence to support Burzynski’s claims, and there is credible evidence to suggest it doesn’t work. And, intentional or not, the clinic’s threats of libel are producing a chilling effect, an atmosphere that silences and stifles the freedom of speech to critically analyze and present facts about Burzynski’s claims. That is unacceptable. If you have a moment, go read Rhys Morgan’s blog post, and leave him some love in the comments. You can also log into the Web Of Trust and vote on how reliable you think Burzynski’s website is.