The Burzynski Clinic part 2

A few years ago, a man called Bernie Madoff was running an investment company. You've probably heard of him. He was offering wonderful rates of return on investments, far in excess of what any other investment companies were offering. Of course, the rates of return he was offering couldn't really be delivered. The whole thing was a scam. Eventually, the FBI came and arrested him and put a stop to his little schemes.

You might argue that the FBI therefore dashed the hopes of many investors, by cruelly taking away their expectations of making great returns on their investments, and that clearly the FBI are the bad guys in this case.

What's that? You wouldn't argue that the FBI were the bad guys? Well, I guess you don't work for the Observer newspaper then.

A rather extraordinary article appeared in yesterday's Observer. This was a follow up to the article they published 2 weeks ago, in which they talked about the Burzynski Clinic, and which was the subject of a recent blogpost of mine. The Observer had, quite rightly, received much criticism of their previous article, as it did not make clear that the Burzynski Clinic offers worthless treatments at exorbitant prices, thus exploiting vulnerable people for financial gain.

So was this article an apology for publishing such a poorly researched and uncritical article? Far from it. Now, we all make mistakes. It is disappointing that the Observer published the article they did 2 weeks ago, but at least the Observer have now had plenty of feedback and have had a chance to learn from their mistake. A mature and responsible organisation would print an apology and explain how they have learned something.

But sadly, we are not talking about a mature and responsible organisation here. We are talking about a newspaper. If you believed that newspapers were mature and responsible organisations, then clearly you have not been following the Leveson Inquiry.

So, the article in yesterday's Observer, far from apologising, attempted to justify what they did and, astonishingly, blame the people who had uncovered the truth for causing harm. This is pretty much exactly analagous for blaming the FBI for the fact that Madoff's clients lost a lot of money.

The Observer appear, despite having had it explained to them many times, to have completely failed to understand the nature of the Burzynski Clinic. They acknowledge that its treatments are unproven, and offer a half-cocked apology for not including information on criticisms of the clinic, but continue to peddle the line that it is a legitimate clinic offering "experimental" treatments. It is hard to know whether this is because they really have no-one on their staff with even the most rudimentary training in assessing health stories, or whether they responded to all the emails they received by the electronic equivalent of sticking their fingers in their ears and shouting "la la la I'm not listening". I really don't know which would be worse.

The Observer claim that pointing out that the clinic is bogus is a cruel thing to do and causes distress to the families who are being treated by the clinic. Well, it may well cause distress. But do the Observer think that it's therefore better to remain silent about any concerns and encourage the clinic to continue taking advantage of vulnerable people? Really?

The idea that the clinic offers experimental treatments that are not guaranteed to work, but might just work anyway, is a seductive one. But sadly, it is wrong. There is a difference between an experimental treatment and a worthless one. An experimental treatment, after more than 3 decades of research, would have produced evidence of efficacy if in fact it did work. Such evidence is completely lacking for antineoplaston treatment.

The ethics of the clinic are also highly questionable. Charging patients life-changing amounts of money to take part in scientifically dubious clinical trials that have no realistic chance of benefit is simply not ethical. It is noteworthy that the Burzynski Clinic's Institutional Review Board (which in theory is supposed to ensure that trials done at the clinic meet appropriate ethical standards) was heavily criticised by the FDA for not following proper procedures in 2009. I don't know if they've since fixed the problems and are now complying with the law, but when I asked what progress had been made on the Burzynski Clinic's Facebook page, my question was deleted. Hardly the action of an organisation behaving ethically and with nothing to hide.

It is terribly sad when people are facing the loss of their children to cancer. But pretending that someone can cure them when it just isn't true does not make things any better. It's just dishonest, and I suspect that it causes more hurt in the end. It is disappointing that the Observer have chosen to take such a dishonest line about the Burzynski story. I have reported them to the Press Complaints Commission on the grounds that their article was misleading, and will report back with any developments.