Archive for November 2011
The model goes something like this: a set of new schools, apparently dedicated to radically improved education of the poor, is set up in competition to existing public provision. Heavily backed by corporate or philanthropic interests, with some working on a “for profit” basis, they are reliant on high-stakes results, strict discipline, a punitive approach to teachers and unions, and tend to have more control over their admissions, higher rates of exclusion, and to take fewer students with special needs or those for whom English is not their first language.
Meanwhile, public (state) schools, many suffering toxic spending cuts, drowning in often unjustified public and political criticism, must continue to educate anyone who comes through their gates, making the alternative new model look shinier still. Yet many still provide an outstanding education, particularly in deprived areas. Sound familiar?
Rhys Morgan is a 17-year-old sceptic from Wales who exposes pseudo-science in his spare time. Marc Stephens* is a representative of the controversial Burzynski clinic who has been sending threatening messages to bloggers who point out the lack of evidence for the clinic’s “miracle cure” claims.
Today, Marc Stephens found out what happens when you get on the wrong side of Rhys Morgan.
In a detailed article, Morgan revealed that Stephens had sent him a series of threatening messages over a blog post he had published way back in August. Alongside the standard-issue libel threats common to those of his ilk, Stephens had threatened to complain to Rhys Morgan’s school, and, even more bizarrely, emailed him Google Maps screenshots of his house, in an apparent attempt to intimidate him.
Morgan initially took the blog post down while he sought legal advice and tried to clarify what, specifically, he had said that Marc Stephens took to be libellous. Morgan then carefully explained to Stephens that the pre-action protocol for defamation requires complainants to specify the precise words to which they are taking exception. Vague, generalised demands, without a clear explanation of the actual basis for the libel claim, are not sufficient.
Eventually, Rhys Morgan gave up trying to get Marc Stephens to provide this information, restored his original blogpost, and published the abusive threats that he had been receiving. News quickly spread through Twitter and other social media – adding to the already-quite-substantial outrage about the Burzynski clinic and its supporters, and ensuring that yet more people heard the criticisms that Marc Stephens had been trying so hard to suppress.
While the UK media has been characteristically slow in picking this up – presumably the Murdoch press are too preoccupied with their own problems and the Guardian Media Group still frozen in the headlights after the Observer got sucked into the controversy – bloggers all over the world have been ensuring that this story continues to grow.
*Not to be confused with Mark Stephens…
Bloggers react as leading quackbuster is threatened with libel over exposé of charlatan cancer claims
I’ve seen some pretty vexatious libel threats over the years, but the abusive message sent to quackbuster Andy Lewis over his measured exposé of the “Burzynski clinic” and its ‘miracle cure’ claims stands out as particularly unpleasant.
I have a lot of respect for Andy’s work and it saddens me that someone would choose to respond to him in this way.
Our dysfunctional libel laws encourage this kind of bullying and urgently need reform. In the meantime, people who make vexatious libel threats in the hope of suppressing legitimate criticism need to learn that this will often have precisely the opposite effect.
Professor David Colquhoun has more background on this story, and comments: “We need a Streisand effect to face down these pathetic bullies. It’s the ‘I am Spartacus’ principle.”
I agree. I am therefore reproducing Andy Lewis’s blog post here in full and would encourage anyone who is concerned about this issue to do the same.
The False Hope of the Burzynski ClinicNovember 21, 2011
It’s a powerful media myth that special American cancer clinics can provide miracle cures for cancer when the NHS cannot.
Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine Glioma. The only option for this aggressive cancer on the NHS is radiotherapy which may reduce symptoms for a few months. Two year survival is less than 10%. It is difficult to think of anything more devastating for a young family.
But the family of Billie do not want to give up – quite understandably. And they are trying to raise £200,000 to send Billie to the Burzynski Clinic in Texas that claims success with many forms of cancer. To help in this aim, comedian Peter Kay announced on Channel Four last night that he was holding fund-raising gigs this week to help Billie get the treatment that may save her life. As he said, “I just couldn’t not do it”. Enlisted to help raise the funds in many ways are a group of performers, including Badly Drawn Boy, Michael Bublé, Cheryl Cole, Gorillaz and Radiohead.
The fund raising web site, The Billie Butterfly Fund, describes the family’s hope in the Burzynski clinic. We are told that Billie has already travelled to America for preliminary treatment and that now she “has been accepted for pioneering Antineoplaston Therapy at the Burzynski Clinic in Texas which has been conducting FDA (US Government) clinical trials”.
Antineoplaston therapy specifically targets cancer cells without harming healthy cells. Each patient has a personalised treatment plan determined by medical history and extensive analysis. Typically treatment lasts for 8-12 months.
In order to be ‘accepted into the trial’, the family need £200,000. But there is hope,
Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.
It’s a compelling media story – a dying young girl, an NHS unable or unwilling to respond, generous celebrities and a hugely expensive and pioneering cancer clinic in the United States. But scrape away at the surface story and there is something much darker – and that story needs to be told and myths dissipated.
The Burzynski Clinic is at best described as ‘controversial’. There are many warning signs given out by the clinic that are typical of cancer quackery, and so great caution is required.
Let me list some of my concerns,
- Burzynski is a ‘lone genius’. Great scientific medical cures rarely stem from single individuals. They are the result of collaboration and teams. Such breakthroughs need to be assessed by peers to ensure that the researcher is not mistaken or overstating their case.
- Burzynski is claiming he has found the ‘cause of cancer’ and his antineoplaston therapy is its cure. Cancer is a name given to many different diseases. There is not a single cause and treatments need to be targeted as specific forms. It is a common quack claim that they have found the ‘single cause’ and they have a ‘unique cure’.
- The ‘cure’ – Antineoplastons – which were extracted from urine (yes – its the piss treatment) – has no good independent peer-reviewed RCT evidence suggesting it is effective.
- Consequently, the treatment is not approved by US regulators. However, it is approved if treatment is part of a trial.
- The Burzynski clinic charges hundreds of thousands of dollars for people to enrol themselves in a trial.
- These trials of this ‘new and pioneering treatment’ have been going on for decades – since 1977. No end appears to be in sight.
- The website Quackwatch has raised concerns about the origin of Burzynski’s claimed PhD.
So, there are many reasons to question this treatment and to wonder if it is anything more than the misguided obsession of lone doctor who might best be describes as a maverick.
Many people appear to have had deep concerns about the practices of this clinic. Dr Stanislaw Burzynski has been on trial for cancer fraud. He is not a stranger to the court room. In a trial in 1997, he was acquitted after a hung jury was unable to convict. An anti-health fraud organisation, NCAHF reported that interviews with the juror’s suggested they felt he “was guilty as charged of violating court orders not to distribute his unapproved “Antineoplastons” in interstate commerce”, but that due to the strong emotions of some of his patients, who believed in him, some jury members felt unable to convict, despite the judges warning to ignore such emotions.
Support for Burzynski appears to be very strong amongst some of his patients. But as NCAHF say, “Trial by placard waving emotion is a form of mob rule.” Burzynski, his supporters and the media are able to cherry pick those cases that appear to have done well with his treatments. Living patients can be strong advocates.
But those who die are silent. Earlier this month, an Irish newspaper reported the tragic story of Zoe Lehane-lavarde who also had a media campaign running to raise money for treatment at the Burzynski Clinic. The report says that Zoe ‘responded well to treatment’ at the clinic. She died, aged 18 months, a few weeks ago.
The case reports that are relied upon to show successful treatment are by their very nature one sided. They ignore the voices of the failures. That is why properly controlled trials are so important, independently peer reviewed. They are sadly lacking with this therapy. We cannot know if the ‘successes’ are small or large in number, or if the successes are due to the new treatment or some other factor. Cancer affects people in many ways. Some live for many years despite many others dying quickly.
Dr Stanislaw Burzynski faces more problems. It appears that the Texas State Medical Board are holding a hearing next April to revoke his medical license. The response from his supporters is huge with campaigns to write letters to Governer Rick Perry. There has also been a movie made in order to support him as he goes on trial – Burzynski the Movie – which you can buy or rent – yes buy or rent – on Amazon, Netflix or Lovefilm. I hope none of the money from his patients has been used to make such propaganda.
I fully anticipate getting lots of comments from his supporters here. Do a twitter search for #burzynski to see the passion. It also appears that threatening letters are being sent out (text here) to bloggers who question his treatment. That is not the action of someone who seeks the truth but of someone who wants to silence debate. Such attempts to silence cannot be seen to be in the best interests of patients but look more like the attempts to protect commercial interests.
The Observer should not have published an article that was so uncritical of such a questionable treatment. (You can write to the readers’ editor at firstname.lastname@example.org). Such articles will encourage others to go down this misguided path. You may argue that such a treatment gives the family hope, even if it is not effective. It may do. But it looks as if this will be a false hope – and false hopes rob people of real choices. The Bainbridge family are in the grip of utter tragedy as the mother is also suffering from cancer. There are undoubtedly many ways that £200,000 could help them, but putting a little girl through dubious, risky and unpleasant treatment, that is exceedingly unlikely to help, is not one of them.
The treatment is not without its consequences. The article in the Observer describes what is going on,
Billie has already started the clinical trial. She went to Texas for a month, six weeks ago. She was able to come back and bring the treatment with her. She has a backpack with the treatment in it and a Hickman line going into her chest which administers this liquid every four hours. She has not been eating since she has been on the treatment so she also has to be fed through a tube – milkshakes and protein drinks.
False hope takes away opportunities for families to be together and to prepare for the future, no matter how desperately sad that is. It may make the lives of those treated more unpleasant and scary. (Antineoplaston therapy is not without dangerous side-effects). It exploits the goodwill of others and enriches those that are either deluded, misguided or fraudulent. It may leave a tragedy-struck family in financial ruin afterwards. Giving false hope may be more about appeasing the guilt and helplessness of ourselves rather than an act of kindness to the sick.
The Observer article talks about how Billie’s uncle has had his ‘cynicism melted away’ by the generous acts of people like Peter Kay. It appears to me that the success of the Burzynski clinic does not depend so much on published robust evidence (he has had decades to produce this) but on human kindness and goodwill. The blogger Orac describes how the Burzinski clinic has been relying on “harnessing the generosity of strangers” for years.
Orac sums it up,
The bottom line is that Dr. Burzynski is not a miracle worker. He is not a doctor who sees something that mainstream science has not and who therefore has a cure for many cancers that mainstream medicine scoffs at. He is not a bold visionary. Rather, he appears to be a man pursuing pseudoscience.
I understand how Peter Kay must feel when he says “I just couldn’t not do it”. We are compelled to help in such tragic circumstances. But I fear that in this case, such help will do more harm than good as others are drawn down this path. As always, people take claims on face value – a clinic that claims to help when others won’t or can’t. There are places that celebrities can go to to help ensure the science is sound, such as the charity Sense About Science, who welcome enquiries of this sort from people being asked to endorse claims.
Peter Kay is right to raise money for this family. And good luck to him. But it would be a dreadful wrong for this money to end up in the hands of someone whose actions cannot be distinguished from mere exploitation of the desperate. That money could make a big difference to this family. It could allow both mother and daughter to be looked after in comfort, without worrying about mortgages or jobs. It will allow them to be together. It will not perform miracles. And nor will it make the pain go away. But such a simple gift will indeed be an act against cynicism and false hope.
Today I was one of four bloggers giving evidence to the Parliamentary Select Committee on Privacy and injunctions. Also on the panel were David Allen Green (Jack of Kent / New Statesman), Paul Staines (Guido Fawkes) and Jamie East (Holy Moly).
My main focus in the discussion was the notorious Trafigura super-injunction which I helped to unravel back in 2009, by posting a “banned” Parliamentary Question on Twitter.
A super-injunction is a gagging order that both prohibits the publication of a specific piece of information, and forbids any mention of the gagging order’s existence.
Trafigura’s super-injunction banned any reference in the UK media to a leaked company memo known as the “Minton Report”. When, in October 2009, the MP Paul Farrelly raised the issue in Parliament, Trafigura’s controversial lawyers, Carter Ruck, tried to prevent the press from reporting Farrelly’s question.
This had come at the end of a year that also saw a draconian libel ruling against the science writer Simon Singh. The year before, Ben Goldacre and the Guardian had successfully defended a vexatious libel case by the AIDS-denialist quack Matthias Rath – yet the newspaper nonetheless lost hundreds of thousands of pounds in unrecovered costs. I myself had spent time fighting off an unfounded libel claim over Don’t Get Fooled Again, and had seen up close the chilling effect that such threats could have.
To me and many others who took action the same evening, Trafigura’s super-injunction felt like the last straw after a series of attacks on freedom of speech. The bid by Carter Ruck to ban the reporting of Parliament seemed like imperial over-reach by a “reputation management” company far too used to getting its way from pliant High Court judges. It seemed extraordinary that a judge sitting in an English court – on a handsome salary funded by ordinary taxpayers – might allow such an effort.
The situation also seemed absurd. The “banned” Parliamentary Question had been published by Parliament on its own website. The Minton report itself had been available on Wikileaks for over a month. Yet anyone who repeated the same information themselves could face prosecution for Contempt of Court.
Secret courts and freedom of speech
But the fundamental problem was the very idea of a secret court hearing to ban the free exchange of information. When a court case is heard in secret, the public has no way of checking whether the judgements made in their name are decent, honest, and fair. Because we don’t even know that the case is going on, we have no way of holding the court to account if – as is inevitable from time to time, given human nature – a judge makes a decision through corruption, cronyism or incompetence rather than through the fair application of the law. Public scrutiny is an essential safety valve in any democracy, and it seems extraordinary that our political class would seek to dispense with it so lightly. This is not a new idea.
Likewise, any constraint on freedom of expression risks being abused by those seeking to cover up evidence of corruption or incompetence, as we have seen time and again with UK libel law.
We might nonetheless accept this risk in certain narrow circumstances. We might agree that some categories of information should in principle, in all or most cases, be kept confidential. Some examples might be:
- Children’s medical records
- The name and address of a person under a witness protection programme
- Information likely to be prejudicial to a criminal trial
We might accept that the courts have a role in enforcing this. But even in these cases, court decisions have to be open and public if we are to minimise the risk of abuse. And for a government official to extend such restrictions to information which merely has the potential to embarrass a large and powerful corporation seems, frankly, reckless.
“How does undermining the rule of law aid the public interest?”
Two years after Trafigura it feels as if progress has been made. There seems to be a general acceptance (other than from Carter Ruck and Trafigura, obviously) that Carter Ruck’s attempt to gag the reporting of Parliament was misguided. There is also a recognition that the current system of privacy and “confidence” injunctions is in a mess, and needs reform.
But it looks as if there’s a way to go yet. Prior to today’s meeting, the panelists were sent a list of somewhat loaded questions, including:
“Most of you have blogged about injunctions; some of you appeared to know or think you were breaching injunctions whilst you were blogging. What were your motivations for doing this? What made you think you wouldn’t be prosecuted?”
“Do you think that you are able to judge the appropriateness of an injunction when you haven’t heard the full case (compared with a judge who has)?”
“What is your definition of the public interest? How does undermining the rule of law aid the public interest?”
In one form or another, all of these questions came up during the session. I clarified to the Committee that when I chose to publish the Trafigura question I was by no means sure that I wouldn’t be prosecuted. I took the risk because I felt so strongly about the issue, and believe that many of the others who did the same thing were making a similar calculation.
The second question may seem reasonable at first glance. But the implication seems to be that when a judge passes a free speech restriction that appears completely unjust, or absurd, we simply have to nod deferentially and trust that they must have had lots of good reasons that we just don’t know about. This again, seems like a prescription for corruption and incompetence.
The last question was particularly interesting. While the Committee wanted to challenge us on our understanding of the “public interest”, it seemed to me that their definition of the “rule of law” was just as much open to question.
a principle of governance in which all persons, institutions and entities… are accountable to laws that are publicly promulgated, equally enforced… and which are consistent with international human rights norms and standards. It requires, as well, measures to ensure adherence to the principles of supremacy of law, equality before the law, accountability to the law, fairness in the application of the law… avoidance of arbitrariness and procedural and legal transparency.“
The International Bar Association, meanwhile, sees the rule of law as establishing “a transparent process accessible and equal to all”. The IBA spells out that “Confidence in the system of governance in any society cannot be maintained unless the process is open and transparent.“
On this basis, it would seem that High Court judges who pass secret edicts restricting freedom of expression – and the Parliamentarians who allow them to continue – are doing far more to undermine the rule of law than the bloggers who circumvent them.
Rich man’s justice
Lord Gold and Gisela Stewart MP seemed concerned – if somewhat bemused – by my suggestion that I would quickly go bankrupt if I was ever dragged into a libel court over something that I’d written. Surely this was incredibly unfair to any potential litigants who might end up losing money by taking me to court? His Lordship noted, disdainfully, that it wasn’t worth anyone’s while suing me, was it?
It was difficult to know what to make of this point, so I thought I’d expand on it here: A typical UK libel case can end up costing upwards of £100,000 to defend. This is a figure far beyond the means of most ordinary people, including most bloggers, and that is why, for most of us, being sued for libel would entail bankruptcy.
The main reason that such cases are so expensive in this country – reportedly around 140 times the European average – is that the “reputation management” firms that bring them are willing and able to charge more for an hour’s work than many of us earn in a week.
This is, in other words, a situation that the legal profession, aided by a Parliament unprepared, so far, to reign in the activities of such firms, has actively created. So it seems odd for Parliamentarians – many of whom, like David Gold, are also lawyers themselves – to wring their hands when confronted with the consequences.
I’ve no idea what the Committee will have made of our testimony. It is, at least, encouraging that these issues are starting to be debated properly. But it is nonetheless disturbing to see such a blithe acceptance among our elected officials of this fundamentally undemocratic system. It’s difficult to see how the current mess will be sorted out, and public confidence restored, until we dismantle these secret courts.
Straw poll – Is the current UK government better or worse than the last in basing its policies on good scientific evidence?
I’m doing an article on science, evidence and evidence-based policy and would be interested to know what people think about these questions:
1. Is the current UK government better or worse than the last in basing its policies on good scientific evidence, or is there no big difference?
2. Is “evidence-based policy” on the march or on the retreat, or is the picture more complicated than that?
3. What are the current challenges facing scientists in seeking to get their voices heard in government?
Please leave a comment or email me at richardcameronwilson AT yahoo dot co dot uk
[Update - I will not be citing this straw poll as any kind of representative sample of public opinion, but I am still interested in general impressions and especially any concrete examples of areas where things may be getting better or worse. ]