There’s a side to the ongoing Burzynski story that, for me, hasn’t really been covered in any great depth as yet and so, at the risk of offending a few people along the way, I’m going to dive straight into it and talk about the role of Burzynski’s patients and their families and supporters and why, as skeptics, we shouldn’t necessarily be letting them off the hook.

For what are perfectly understandable reasons, most of us who’ve written about the Burzynski Clinic over the last few weeks have either avoided or skirted carefully around this issue. We are, after all, dealing with people here who are seriously ill and in a desperate situation. Many have cancers for which there are currently no effective treatments or which have passed beyond the point at which conventional chemotherapy and radiotherapy have much to offer by way of improvements to their prognosis and so, where these patients have been referenced at all it has only been to acknowledge the fact that they are in a pretty desperate situation and that, consequently, they should be treated with compassion and sensitivity regardless of what we might think about the clinic itself.

On the face of it, this all seems perfectly reasonable both in purely human terms – no one really wants to be seen to be kicking a very sick person when they’re at their lowest ebb – and, of course, tactically.

The key message that skeptics want the rest of the world to see and take careful note of are that Burzynski Clinic has been exploiting loopholes in the US regulatory system for the last thirty years in order to scalp a lot over extremely desperate and very sick people by selling them unproven and, in many cases, worthless ‘cancer treatments’. I say ‘many cases’ here because one of the most striking things to emerge from the [unwanted] attention that Burzynski has received over the last few weeks is the evidence which raises serious question not about the claims he makes for his treatments but also about the precise nature of those treatments.

Nothing, it seems, is quite what it might appear to be on the surface.

Burzynski’s supposedly pioneering ‘antineoplaston’ treatments, which his supporters in the alt-med sector believe to be something other than chemotherapy, appear to nothing more than a conventional orphan drug with a mode of action which absolutely falls within the accepted definition of chemotherapy.

Then there’s the evidence which shows Burzynski to have been playing mix and match with his treatments by throwing unproven and, seemingly, even untested combinations of conventional medications at his patients in a manner that just isn’t covered by any of the 61 trial protocols that he has registered with the US National Institutes of Health.

All this comes on top of serious concerns about Burzynski’s activities that have been in the public domain for quite some time.

The Texas Medical Board’s complaint against Burzynksi has been part of his public record since it was filed, in December 2010, and readily accessible to anyone who cares to use the TMB’s own website to check the status of Burzynski’s medical licence. This same record also includes full details of Burzynki’s previous run in with the TMB, in the 1990’s, which led to his licence being, first, suspended and subsequently reinstated subject to a ten-year period of probation with strict conditions placed on his activities.

The FDA’s warning letter, which catalogues serious failings in the workings of the Institutional Review Board (i.e. ethics committee) which is supposed to oversee Burzynki’s trials and keep them on the straight and narrow has, likewise, been on file and on the public record since October 2009.

Together, these documents raise some extremely serious concerns about the manner in which Burzynski has allegedly been treating his patients. Its alleged that he has failed to obtain informed consent for some of the treatments he’s administered, breached FDA regulations on the use of off-label cancer medications, causing a patient to suffer unwarranted side effects in the process and that he continued to administer an unproven, off-label, ‘treatment’ to a patient for almost year while ignoring the results of MRI scans which showed that the drug was having no effect whatsoever and that the patient’s cancer was progressing, all while neglecting to inform the patient clearly of their obvious lack of progress.

For all that its important to ensure that these issues are given a full and proper public airing, skeptics are, of course, keenly aware of the fact that, just by calling attention to these issues, we too easily risk casting ourselves in the role of the ‘bad guys’ in this whole story.

We are, after all, the one’s who are pointing out to the world that, if really look at this whole situation properly, then it should be obvious to everyone that the Emperor Burzynski has been wandering around for the last thirty years with his tadger flapping in the wind for all to see, even if some people don’t want to look because they – mistakenly, as I see it – prefer to believe that even a false hope is better than no hope at all.

For as much as I understand and accept the validity of the reasons given for taking a softly, softly approach with Burzynski’s patients and their families, the problem I have with it is it that it too readily fails to illuminate what is one of the most, if the most, despicable facets of the Burzynski Clinic’s business model.

By preying on people who are genuinely in a desperate situation and charging them huge sums of money to join one of the never-ending series of so-called clinical trials, the overwhelming majority of which  fail to report any kind of results, Burzynski not only scalps these people for tens, and even hundreds of thousands of pounds/dollars but, in some (many?) case he also compels them to serve as his accomplices and even, when the critics begin to circle, as his own human shields.

It’s one thing for Burzynski to screw over people who can afford to cover the crippling costs of his treatments – although it has to be said that anyone who can comfortably cover those can costs could also readily afford to engage the services of the kind of oncologist who’d happily eviscerate themselves with a rusty dessert spoon rather than sully their hard-earned professional reputation by associating themselves with the Burzynski Clinic – it can be argued, maybe not always convincingly, that people who succeed in being both rich and gullible only really get what they deserve, if and when they get suckered by the snake oil industry.

But for many of Burzynski’s patients, the search for hope – any kind of hope – in a desperate situation forces them to actively impose on the generosity of others.

What brought this particular clinic to the attention of skeptical bloggers wasn’t Burzynski’s activities per se, much as these merit our attention. Rather it was the recent spate of public fundraising appeals by families desperate to raise the funds necessary to send a loved one to the Burzynski Clinic that served to turn the attention of the increasingly lidless eye of online skepticism in the direction of this particular clinic and that, for me, raises ethical question that I cannot easily set aside just for the sake of trying to play nice with some people, even allowing for the shitty situation they’re in.

Maybe its just me, but I get much the same kind of feeling whenever the media runs one of its periodic ‘dying kid in desperate need of a transplant organ’ stories. I know these appeals are made with the best of intention but nevertheless, when I do run across them. I can never quite shake the niggling feeling that, far below the surface, they carry an implicit message of ‘Hey look. Sorry, but we we really would like someone to die here, so that this other person can live”.

To be brutally honest, it doesn’t help matters much that these stories are pretty much always about children and young people, except for the occasional adult who, almost always has a young family that will be left without a parent if a donor organ cannot be found. Rarely, if ever, do you see the media running stories about a 55-year old man who’s in dire need to a kidney, unless there some sort of celebrity angle they can play it.

Its much the same with cancer. If a woman in her twenties dies of breast cancer then its news. If she’s in her sixties then its a couple of lines the obituary column in the small ads, next to the local council’s road closure notices.

What there is in all this – and the people who make these kind of appeals are genuinely unaware – is a sense that we’re perhaps veering perilously close to attitudes which treat some people as nothing much more than a means to an end, and the history of medicine and medical science there are more than example of the consequences of that attitude to serve as warning that that’s just not somewhere we should be going. Its a place where bad things can happen, and if you’re unsure what that means that I suggest that you head for the history books and look up the story of the Tuskegee syphilis experiment.

The more I learn about Burzynksi’s modus operandi the more apparent it becomes – to me, at least – that he operates very much on the basis of treating a hell of a lot people, including his patients, as not much more than a means to an end. If nothing else the rather low regard that seems to have been afforded to what should be critically important ethical matters, i.e. informed consent, etc. seem entirely characteristic of just such an attitude, and the viral nature of his operation, which serves to propel his patients into acting as both his financiers and his sales reps, is something that I find particularly repellent.

There are, I think, parallels that can legitimately be drawn here with pyramid schemes. Although Burzynski has an actual service to sell, unlike most classic pyramid schemes, his business model is one that nevertheless ensures that the guy at the top does very nicely indeed – his personal income was estimated to be somewhere in region of $20 million back in the 1990s, while everyone lower down the fundraising scale winds up out of pocket and, in the case of some patients with their families also facing serious level of debt, while getting little or nothing of value to show for the efforts – or their money, of course.

By far the most depressing articles to emerge out of this story have been the one’s that sought follow-up on some of Burzynski’s past patients, records of which are often only to be found in media reports of their efforts to raise the funds necessary for their treatment.

Stanislaw Burzynski’s public record RJB, Skeptical Humanities, 26/11/11

The ones Burzynski doesn’t boast about anarchic teapot, Short and Spiky, 27/11/11

More patients whose deaths Burzynski has presided over… Skeptical Humanities, 05/12/11

These articles do not make pleasant reading and, sadly, the moral of the story they have to tell is that dead men don’t write testimonials and the media shows little by way of ‘human interest’ in the outcome of these story save once patients have been treated by Burzynski. Death, the ultimate denouement for many of those whose fundraising efforts were deemed to be newsworthy is, itself, only news when it comes before they’ve raised the money to pay Burzynski’s bills.

Much as we might sympathise with patients and their families and supporters, there are ethical considerations here that cannot reasonably be ignored.

Yes, based on the evidence garnered over the last few weeks, we can reasonably consider these people to have been hoodwinked but one also cannot help but notice how quickly some of his current patients and their families have moved to try and defend their own position by claiming to have thoroughly researched their options before settling on the Burzynski ‘miracle cure’ and, in once case, by sending a rather taunting, and wholly unsolicited, tweet to Rhys Morgan, informing him that their tumour had reduced in size since beginning treatment. Based on Burzynski’s track record, its seems unlikely that he’ll bother to explain to that particular patient that initial tumour response is only poorly correlated with long-term survival, although that is the advice that a genuine oncologist would give to their patient is just such a situation, and for me this sheds further light on the manner in which Burzynski manages to secure the unwitting complicity of his patients.

That said, one also has to question, sadly, whether it really only themselves that patients and their families are moved to defend here, when skeptics raise concerns about the value and efficacy of the treatment they’re receiving, or does at least part of the motivation stem from a desire to defend the ongoing fundraising campaign that’s paying for their treatment, even in the face of a growing weight of evidence that suggests that they, and their supporters, are being bilked and that the only tangible thing they’re actually defending is a wealthy quack’s self-presumed right to reap the considerable rewards of subverting and skirting around the very regulations that are there to protect vulnerable people from being fleeced, however inadequate those regulation may have proven to be in practice. That’s not at a pleasant thing to have to contemplate and serve to further emphasise the full extent of the outright scumbaggery we’re dealing with here.

As time goes on and more and more information relating to the reality of Burzynski’s activities finds its way into the public domain, through the efforts of skeptical bloggers, to counter the concerted PR and propaganda campaign that has been mounted by Burzynski and his supporters, in particular since the Texas Medical Board renewed its efforts to remove his medical licence, the more threadbare and unconvincing the ‘sshhh, don’t upset the patient’ defence is beginning to look and the more difficult it become to justify giving these people free pass, particularly when it comes to fundraising campaigns and the ethical issues those raise.

Even if one can still, just about, excuse Burzynski’s patients and their families from all but the mildest of criticisms, no such excuses can be made for journalist, and like pretty everyone who’s been involved in this story its been disappointing to see the Evening Standard joining the Observer – and the BBC, who got in months ago, in giving uncritical coverage to fundraising campaigns mounted by families that have bought into the Burzynski pyramid.

To date, none of these organisations has managed to mount a convincing defence of their own role in – again unwittingly – promoting Burzynski’s activities without adequately reflecting on the controversy surrounding them or the serious concerns that have emerged not just about his treatment’s lack of apparent efficacy but also about the Clinic’s alleged ethical shortcomings and its mix and match approach to the use of off-label medications. If the only thing that any of these media outlets had done was flag up the existence of the Texas Medical Board’s efforts to remove Burzynski’s licence or the FDA’s criticism of his clinic’s IRB then that might have been something, but to simply describe his treatments as ‘unproven’ and ‘experimental’, without even noting that they’ve been unproven and experimental for thirty years without showing any signs, until very recently, of an attempt at running a phase III trial, is just not good enough.

Whether they wish to admit or not – and as the journalist who wrote the Evening Standards article, Rob Parsons, has no further wish to comment, I think we can safely assume the answer is ‘not’ – all three of these media organisation have joined Burzynski’s merry band of unwitting accomplices although, of course, none of them can claim either desperation or – if they do their job properly – ignorance by way of a defence.

Fair enough, we get the picture. ‘Human interest’ stories are cheap to produce, cheap to run and, in this case, almost entirely risk free, where investigative journalism, which is what this story actually merits, is expensive and can carry considerable risks, particular if te object of the investigation is of a litigious disposition. That might just about excuse the original story, but not the head-in-the-sand response that’s followed in the wake of people pointing out just how much important information that story didn’t contain and in this respect, Rob Parsons’ claim that his aim was to ‘try and tell the story of Chiane and leave people to make up their own minds as to whether they want to help her be treated at the clinic’ is nothing short of laughable.

While the occasional bout of wilful blindness might justifiably be considered heroic in a certain, long-dead, naval commander from the Napoleonic period, in a journalist its nothing more than another indication of just how far industry standards have fallen over the last 20-30 years.