We were delighted to have Jen Keane down to speak to us on Saturday night. Jen has taken a personal interest in the Dr. Burzynski story. She has been a prominent voice on the Internet, challenging the widespread view that Burzynski is a “pioneer” and a “maverick”. Dr. Stanislaw Burzynski runs a cancer clinic in Houston, Texas. In recent years, he has become famous around the world for offering a supposedly side-effect free cure for certain types of cancers, deemed incurable by most medical experts. Many support groups have been formed to raise the huge funds necessary to send patients to the clinic in Texas, where they can partake in Burzynski’s “revolutionary” treatment.
Not is all it seems, unfortunately. Burzynski has published very few studies in support of his antineoplaston therapy. His treatment has not been approved by the FDA, and it is still – after 30 years – in clinical trial phase (which makes it highly unethical for him to be charging patients for his treatments). Although very little clinical information has been published by the Burzynski clinic, there is growing evidence that his treatments fall far short of the clinic’s promises, offering little or no advantage to anybody except Burzynski’s bank account.
Jen, who tweets as @Zenbuffy on Twitter, has had an ongoing interest in this story for some time now. Her father passed away recently from cancer, so she understands well the difficulties faced by patients, families and friends in such situations. She recognises the conflicting nature of the Burzynski situation: where patients’ freedom to choose knocks against the false hope on offer by the Burzynski Clinic. While patients should be free to choose, they and their families also need to be fully informed. This is not the situation at present. The information on offer by Burzynski is not the whole story. The press releases, glowing testimonials and documentary films are little more than advertisements. Information about side-effects, clinical trial results or negative results are much harder to come by. Patients, families and friends are not given the full story and instead are being told that critics are part of an organised conspiracy to silence Burzynski because he represents a threat to the special interests involved in the “cancer industry”. Mainstream media is not helping, preferring the publication of uncritical pieces rather than examining the many legitimate concerns of those who see another side to Burzynski. Thus, they are helping the marketing of Burzynski to a wider audience.
Jen had words of advice to those who might criticise patient support groups – “Be Kind”. While sceptics can and should be forthright in their concerns, little is achieved through ridicule, insults and insensitive comments on the Internet, of which there are many examples on all sides. The people who are fundraising and trying to help are usually doing it for the best of reasons. Unfortunately in this case they have been badly informed, and the responsibility for this falls at the feet of the Burzynski clinic.
There are many resources available, putting forward the position of prominent scientists, oncologists and skeptics in this area. David Gorski has been blogging about Burzynski for a number of years, as have Orac and Andy Lewis among others. A website, thehoustoncancerquack.com is fundraising to raise awareness of Burzynski’s activities, while simultaneously helping cancer patients in St. Jude’s Childrens Hospital.
This was a powerful, well researched talk. We’re looking forward in having Jen back in Cork at a future date.
Celebrities and Science 2012
Every Christmas, Sense about Science reviews some of the more extraordinary statements by celebrities in the past year. This year was no exception, with dried placenta pills being suggested as a mineral supplement, ground coffee beans as a treatment for cellulite and compressed oxygen to help slow down the ageing process. Is this the reason why “celebrity” and “credulity” sound so much alike?
GM Foods – a change of heart.
For years, Mark Lynas has been to the fore in the campaign against genetically modified foods. In a recent lecture to the Oxford Farming Conference he outlined a very different vision – one where GM foods could be part of the solution, rather than a problem to be eliminated. It’s a great talk, definitely worth a listen.
Sandy Hook Conspiracy Theories
Following on from the terrible shooting at the Sandy Hook school in Connecticut in December, a number of websites have sprung up claiming that the event was a conspiracy designed to part Americans from their guns. Some people have been targeted as “crisis actors”, while parents have been accused of not expressing “proper levels of grief”. They’ve produced a video about it – such is the level of insanity in parts of the conspiracy community.
The BBC’s Inside Out programme reported that Ainsworths, a homeopathy supplier in the UK, has been recommending homeopathic vaccines as an alternative to vaccines that inoculate against Measles, Rubella and Whooping Cough among other illnesses. Whooping Cough (Pertussis) and Measles are experiencing something of a resurgence in Ireland due to lowered vaccination rates.
The 12 Cognitive Biases that prevent us from being rational
The website io9 published an interesting article on 12 common faults in our hardwiring that make us prone to making huge errors in judgement. Errors include Ingroup Bias, Post-Purchase Rationalisation, Observational Selection Bias and Neglecting Probability. These biases help us to understand why rigour is required in science. Simple observation and anecdote does not guard against bias, so when it comes to the critical questions we need a greater standard of observation and analysis.
June 3, 2013 at 7:37 pm
Skeptics? More like mendacious liars. He has a multi-million dollar research and production facility staffed by scientists, engineers, etc… he knows very well that if he gives the patents, PHRMA will label it as a false remedy in response. Why don’t you actually look up the data on the patients? Now I understand why the most brilliant minds go to physics, because medicine is an inexact field filled with inexact people.
November 9, 2013 at 9:41 pm
Hey Michael. You owe all skeptics an apology. http://theotherburzynskipatientgroup.wordpress.com/damning-fda-findings-about-stanislaw-burzynskis-trials/