So a very interesting story has developed over the last few weeks. Like many stories of questionable cancer ‘treatments’, it involves a desperate family trying to do whatever they can to save their child, it involves celebrities and communities wanting to lend a helping hand, it involves a prominent media outlet keen to publicize the story but also, sadly, it also involves a party which is – shall we say – less than transparent about its claims of being able to treat cancer thus opening itself to legitimate criticisms about its setup.
It all began when Billie, a girl of only four years of age from the town of Exeter in the UK , developed inoperable brain tumor. This was a desperately sad situation for the family even more so because Billie’s mother Terri is also suffering from Breast Cancer. It is impossible, not feel anything but the utmost sympathy for somebody in this situation. Not only is it unimaginable for parents to see their child in such trauma but the thought of not having anything concrete to grasp for their child’s recovery is something I cant even begin to fathom. Luke Bainbridge (who is Billie’s Uncle) wrote a heartfelt article in the Observer (which is affiliated with the Guardian) and this is where it all began.
Naturally, without fail, many people – from all walks – willingly wanted to do whatever they could, donated money, time and effort to the cause. When the life of a little child like Billie is at stake, I defy anyone not to be moved and shaken to their very core. But the problem was not people’s good intentions, it was where those intentions were being channeled. And unfortunately they were being channeled towards a Dr. Stanslaw Burzynski who claimed to have the cure for cancer.
Burzynski has an interesting history and frankly there are others who have done a rather good job diggin him up so I suggest you take a look. His treatment involves “personalized gene targeted cancer therapy” which – suffice to say – lacks genuine scientific evidence behind it, as ScienceBasedMedicine so thoroughly demonstrates For those interested in the nitty gritty of the story, I urge to read Respectful Insolence ‘s take on it. One of the interesting bits about this story is the fact that he seemingly used a loophole to conduct and essentially run a treatment operation for cancer patients. While the FDA can block cures devoid of evidence, it is somewhat handicapped if the essence of the operation is presented as a ‘trial’. He seems to have worked out a clever strategy of marketing this thing as pioneering by using this trial loophole and charge an exorbitant amount of money from the most extremely vulnerable set of people.
Revenge of the Nerds
This is where the story got interesting. It came to my attention through a site called Quackometer. More pertinently, when the proprietor of that site Andy Lewis got threatening responses from the Burzynski clinic in response legitimate questions that he aired about his protocol. It veered from the absurd to downright intimidating as someone (posing as a lawyer but in fact a PR guy for the clinic) sent him email after email pushing him to delete all the content at his blog. Prior to that Rhys Morgan, a 17 year old from Wales (who incidentally has had a previous altercation with another Miracle Mineral Solution quack named Jim Humble) was also contacted and intimidated in the same bizarre way by Dr Burzynki’s clinic. Not unsurprisingly this story started doing the rounds and over a 100 bloggers have now written about this (further hurting Burzynski’s google search results)
When someone is so quick to push the libel button and threats, a red flag must to go up in your head. In matters of Cancer research, where surely the objective has to be finding what works and ironing out what doesn’t work HAS to be the priority. It is an ethical imperative. Cancer research cannot (MUST not) be subservient to people’s commercial interests (whether they be big pharma or big quacka; no matter how groundbreaking they say their treatment is), the stakes are just too high for such heavy-handedness from these parties, to be allowed. This ‘Red flag’ is essentially what these bloggers spotted and were attempting to follow up on. They were skeptical of the work of Burzynski and they wanted to make sure people were doing there due diligence before pumping so much money into this enterprise.
Who to Blame?
Now, personally I think its important to exonerate the family themselves ENTIRELY from this ‘lack of due dillegence’. They are under unimaginable pressures and to expect them to make ultra-rational decisions at a time of great distress is an ask that is simply unrealistic. And in fact I don’t think there decision to go to the clinic was borne out of irrationality, as their primary aim is to do whatever it takes to save their child. There can be no doubt about that whatsoever. So I have No bone to pick with them at all.
I do however, feel that the surrounding actors in all this, have let them down. Chief among them is the clinic itself which willfully promotes itself having a cure for cancer (when there is no scientific evidence to back it up). Also the Observer (Not even, Luke Bainbridge who authored the peice) as an institution have some serious questions to answer. They have resources, (e.g. the Guardian – up until recently employed Ben Goldacre among other really clever people who have done great work at exposing unscientific ‘cancer treatments’) they have the financial muscle and frankly they have the time which the average person does not to investigate things of this nature.
Quacks will always exist, but we are entitled to have higher expectations of journalistic institutions like the Observer. Unfortunately they have gone for the “compelling human interest angle” above and beyond the science and in doing so, they have not only promoted what seems alot like cancer quackery, but they have also blurred the lines between good science and bad science. They did respond to the uproar by the blogs with this rather feeble attempt. Unfortunately it seems like the have not learned from the MMR-debacle - and that is such a shame.
An insidious part of the story is this attitude of “I’m doing charity, so shut the f*** up and dont ask questions”. Yes people’s (especially celebrities like Peter Kay who planned to do gigs for Billie’s benifit) willingness to help the little girl is laudable but they should have some inkling for due diligence rather than thoughtlessly following everything. And if there are concerns, they should have the moral fortitude to raise them with the family. Instead, it almost forces the family to stick with this decision, now that so many have invested time, money and effort – and its not a healthy position to put them in. We all wish Billie well and are desperate for her to somehow find a way fight off this battle. Criticism and raising genuine questions about the treatments – I think – is a moral and a valid contribution in that fight. It should be encouraged and not silenced by intimidation.
Update: It is with profound sadness that I need to report that Billie unfortunately passed away on 1 June, 2012. Whatever the ifs and buts and wherefors of this story, let us never forget, how terribly heartbreaking this has been for Billie’s family and lets hope that they find the strength to cope with their immense loss. Thoughts and sympathies with them.