Why I became a skeptic.
It all started many years ago. I was christened, baptised and confirmed Catholic; I followed the faith for years without question. Things like God never answering prayers, or all the bad things happening in the world, due to "free will", never occurred to me to question.
Gradually, as if I were someone slowly waking from a deep slumber and being inexorably drawn to the truth, I literally, mentally woke up. This didn't happen over night.
I realised that there were too many unanswered questions, perhaps answerable only by way of anecdote, opinion or apocryphal story. This just wasn't good enough. I needed to know more. I needed to dig deeper. I needed the truth about everything.
More recently I began thinking. I started to question everything: I questioned religion; I questioned people; I questioned life. I investigated Atheism and Agnosticism, and the reasons people apostatise. I became a big fan of James Randi, Penn & Teller, Houdini, Richard Dawkins and the late Christopher Hitchens. I read as much as I could, still do. In fact, my story is so involved and long running I won't go into it here, at least with regard to the religious aspects of my "enlightenment". Rather, and moving forward to the almost-present day, this is how I became a skeptic.
It was Sunday 20 November 2011 that an interesting story appeared in the Guardian (website in this case), written by Luke Bainbridge and entitled "The worst year of my life: cancer has my family in its grip".
Luke wrote: "My four-year-old niece Billie has an inoperable brain tumour. Her mother, my sister-in-law, has breast cancer." In fact, Billie had Diffuse Intrinsic Pontine Glioma (DIPG).
Being an incredibly rare illness with only about 40 children diagnosed with it every year in Britain, the odds were against her.
Luke then goes on to explain about "a pioneering treatment at the Burzynski Clinic in Texas for children with DIPG".
"The estimated cost is £200,000. It is not available in this country, it is new and there are no guarantees. When you are faced with a decision like that, what can you do? It's like Monopoly money and when we realised we would have to raise this amount, it seemed ridiculous. Especially as there's only a slight chance that the treatment might work."
This seemed a simple plea for help (and money). Celebrity influence, in the form of British comedian Peter Kay and British band Badly Drawn Boy, was also drawn in to raise money. I wondered if there was anything to this claim, after all £200,000 is a substantial amount of money to simply (and blithely) hand over without a little proof.
As the news of this story spread like wildfire, the blogosphere came alive and, what can really only be described as a war, broke out as people began asking for efficacy of this clinic's trial-treatment. The "war" comprised of bloggers and tweeters asking for evidence, while hotly defending the lack of evidence were the patients, the support groups and in general, the apologists. At one point the Burzynski Clinic directly attacked Rhys Morgan, a 17-year-old Welsh schoolboy, with libel threats.
I believe this excerpt is the most poignant both to libel law as well as science:"[Plaintiffs] cannot, by simply filing suit and crying 'character assassination!', silence those who hold divergent views, no matter how adverse those views may be to plaintiffs' interests. Scientific controversies must be settled by the methods of science rather than by the methods of litigation. … More papers, more discussion, better data, and more satisfactory models – not larger awards of damages – mark the path towards superior understanding of the world around us." – US Chief Justice Frank Easterbrook, Underwager v Salter 22 Fed. 3d 730 (1994)
The more I read, the more I needed to know and the more I had to get to the bottom of it all. I lived and breathed "Burzynski"; I still do, although I have cooled a little pending the outcome of a report I complied with the help of Sara Siegler - a whistle blower and Dan Sfera - of the Clinical Trial Gurus fame.
As it turns out, there is so little information published as to the effectiveness of this "treatment", that no one can really say whether it works or not. There is no imperical evidence to support the efficacy of Antineoplaston treatment the clinic offers; at least nothing beyond anecdote and conference reference.However, Laura of the Hope for Laura charity, reports some 77% tumour shrinkage. You can read her blog here. That blog also secured celebrity endorsement in the form of British comedian Rufus Hound. The MRIs and the medical notes are not publicly available for impartial, statistical and medical scrutiny; these details being crucial and key to finding the truth.
We are encouraged to take the blog, and its reports, as gospel. Faced with such 'obvious' evidence, on the surface, it is difficult to refute, but the plural of 'anecdote' is not 'data', and it is the data which is the qualifier. Just because I tell someone I can fly, that anecdote does not make it so.
The question still remains: if Dr Burzynski has indeed found a cure -- or at the least an efficacious treatment -- for even a single type of cancer, then we all want to know about it. We all want to be rid of this cancerous [no pun intended] blot on mankind and the sooner the better. So why not publish the results and trial data in respected journals? Why not shout it from the rooftops? Why instead, go about your business, shrouded in secrecy, refusing to answer the call of the skeptic? The easiest way to hush the skeptic is with good old fashioned evidence.
For the record: It is not my intention to directly attack the patients themselves. I did originally donate £10 to Laura's cause as was mentioned on Twitter and I'm happy to put my hands up to that. She was (and still is at time of writing this blog) ill and in need of help from the public, to which she, the charity and several celebrities appealed.
At the time, I simply wasn't aware of the bigger picture, including the history surrounding the clinic and 'treatment'. If anything, I suppose you could say "I was suckedered in with the rest of 'em." However, I am far more informed now, and I am asking the right questions, but that doesn't make me evil or bad, nor does it detract from teh truth I seek.
I wish Laura well as with all of the patients engaging or attending with The Burznyski Clinic.
Believe it or not, skeptics do have the patients' best interests at heart when we ask for the evidence, though is rarely well received as is often their last hope, and usually when all conventional medicine has failed.
Skeptics feel that charlatans peddling false hope and preying on vulnerable and desperate people for a quick profit should be challenged and stopped. It's true that no one should stop anyone from making their own decisions, but personally speaking, I would rather the potential patient was fully aware of everything -- a total transparency if you will -- before signing lots of money over to a quack and their Snake Oil.
In this video, Dr Ben Goldacre explains why clinical trials are important, what they involve and who can take part in one. He also describes common concerns patients might have and gives tips on what questions to ask before taking part in any research.
This is what The James Randi Educational Foundation wrote about The Burzynski Clinic.
It's worth mentioning that Chemotherapy is what The Burzynski Clinc administers. I'm not quite sure how the "it's not Chemotherapy" suggestion came about but the NHS asserts: Chemotherapy is a type of treatment for cancer where medicine is used to kill cancer cells. It can be given either as a tablet, or as an injection or infusion directly into a vein. So despite what Laura's understanding is, it's not quite correct according to what is accepted as "chemotherapy".
So moving forward: by simply asking for the clinical trial data, which would prove or disprove the efficacy of the clinic's treatment, I have been subjected to an argumentum ad hominem in which my personal life -- regardless of it being completely irrelevant to my question -- was dragged into Twitter. I was a little disappointed to have been personally attacked by Laura here considering my original and early feelings toward cancer and charity.The proverb states one should not bite the hand that feeds you. I couldn't help feeling that, despite my original, well-intentioned gesture, this was being thrown back into my face, and for simply asking a question about the clinic, and it wasn't even directed at Laura!
I have noted several Burzynski apologists, though there is little point in listing them here (I'm sure you can find them if you've a mind to), take so much pleasure in attacking skeptics to a level that might be considered imprudent.
And on to the present. The report I helped compiled, is now with the FDA, FBI, NCI, NIH and the Inspector General of DHHS. We have also completed a FOIA request in an attempt to release the data. You can read the PDF report here.
I particularly like this quote as it does epitomise what I'm trying to do but does explain why others feel the need to vilify the skeptics:
"The idea is to try and give all the information to help others to judge the value of your contribution; not just the information that leads to judgment in one particular direction or another."
-- Richard P. Feynman