This morning, the Observer has responded to the large amount concern raised by its coverage of the Burzynski Clinic two weeks ago. The Observer told the story of how Peter Kay and other celebrities were raising huge sums of money to send a four year old girl with cancer to a ‘pioneering’ clinic in Texas. Except that the Observer failed to mention the controversial nature of this clinic and how it is likely to be charging a fortune for false hope.
Written by Stephen Pritchard, the Readers’ Editor, the response attempts to justify its coverage and blames bloggers for “aggression, sanctimony and a disregard for the facts”. It is a disgraceful and self-serving response. Pritchard claimed their story was one of “courage and generosity”. No it was not. It was a story of exploitation of courage and generosity. The Observer still fails to understand this.
First of all, and let’s get this out of the way, as Pritchard himself admits, he has a conflict of interest. His son plays in the band Everything Everything which held a benefit gig to raise money to send a sick child to the Burzynski clinic. The original article was written by the Uncle, Luke Bainbridge, of the poorly four year old who also happened to have been the Music editor for the Observer. This involvement with such an emotive issue should have required more dispassionate voices at the paper to respond.
The response fails to address the serious concerns raised about the article, and instead appears to attack those concerned for insensitivity and a lack of understanding. This is incredible. I have found almost without exception, the dozens of blog posts written about this story to be compassionate, insightful and targeted at those who should have known better – not the families of cancer sufferers – but those promoting the clinic, raising money for untested treatments, and the clinic itself.
When I first broke the story of the Observer’s coverage, I received around about 4,000 views of that story on that day. After the Burzynski Clinic tried to threaten my family, and the story went viral, I have received close to 200,000 page views. Within that readership, if a few have acted insensitively, I am appalled, but I am not surprised. I understand someone tweeted a family attending the clinic – very poor judgement – but hardly representative of the wave of sympathy that has been extended to people in this appalling situation.
I also must say that I have been contacted on twitter by one family attending the Burzynski clinic. The writer claimed to be harassed by the blogs and asked me to stop. I have never written about this family and do not intend to. But, the fact that I have been highly critical of ‘her choice of doctor’ appears to her that I am harassing her. Of course, I do not intend to. Nor do I want a public debate with her. I can fully understand that the decision to go to Texas has resulting in huge emotional and financial investment and created a hope for the future. The public debate needs to be had with those who wittingly or unwittingly support this clinic and make the huge payments possible.
But as one twitter user this morning asked, “I wonder if the Observer will be doing article on the difficulty the Nigerian Royal Family have getting money out of country?” That remark is not as flippant as it may appear. When we see people making bad decisions, or decisions based on misleading or incomplete information, are we to remain silent and see them come to harm? No one likes it being pointed out to them that they may have been misled. And no one wants their hopes taken away. But to write a ‘human interest’ story about their journey into misadventure without pointing out the dangers in their decisions is not “human interest”, but complicity in misinformation.
The article fails to get to the nub of the concerns with Burzynski. First and foremost, the dubious ethics of charging parents of terminally ill children, hundreds of thousands of dollars, to enroll them in trials for a treatment that has failed to demonstrate any good evidence that it may be effective over 30 years. Burzynski is running a private clinic. He sells anti-aging creams, vitamins and supplements. He is under investigation by the Texas Medical Board. These are a few of the many red flags that ought to raise deep concerns. Even if he is on to something with his antineoplastons, he is asking the terminally ill to provide the investment funds for his research programme. His patients are taking all the risks, both with their health and wealth. He is reaping rewards whether he is right or not. Such actions go against the fundamentals of medical ethics.
Pritchard justifies the approach by saying “the point that is being lost in the vitriol that is flying around the internet” is that the treatment provides some hope for the parents.” My original article suggested that it was cruel to raise false hope. The costs involved are not just financial, but carry pain and risks for those being treated. In any medical treatment decision, there are benefits and risks. At some point, a balance needs to be struck. A glimmer of hope cannot be a full justification. Ken Murray has written recently how doctors tend to take fewer and less aggressive treatments at end of life. They better know the balances of risks and benefits, and can better decide on the trade offs between quality and quantity of life. When we come to terminally ill children, the issues are different. Their decisions are made for them. The balance tends to shift towards an all out attempt to give quantity of life over other factors. Straws are clutched at and these decisions may not always be in the child’s best interest. It is these perfectly natural and desperate decisions that unscrupulous or incompetent people may trade off.
I do not know the answers. But these discussions need to be had. And they need to be had in the context that there are peddlers of miracle cures out there, that may appear genuine to a desperate eye, but offer nothing but anguish, false hope and bankruptcy.
The Observer’s response not only failed to look at these issues, but took issue with those people that tried to. Most disgracefully, they attacked the 17 year old blogger, Rhys Morgan, for saying in his Guardian CiF article about libel threats from Burzynski, that the family had researched Burzynski on the internet. The family appeared to take issue with this and the Guradian has amended the article to say “The family has asked us to make clear that members of the family completed a long and thorough period of research across a wide range of conventional and alternative treatments, both in the UK and abroad, before approaching the clinic.”
Is this the justification for calling bloggers like Rhys, “aggressive, sanctimonious and having a disregard for the facts?” You should read Rhys’s blog and articles and decide for yourself. The response also failed to note how Rhys had been threatened by representatives of Burzynski by sending him pictures of his house. This is not science and medicine, but gangsterism. Let me remind you, Rhys is still at school. If there has been aggression against children, it has not come from bloggers.
The article leaves several assertions still unchallenged. They claim that “[we] know it is unproven, but there are other families in this country who were told by their hospital that their condition was terminal and nothing could be done for them, but were then treated at the clinic and survived.”
This is a misleading statement and may encourage other down this dangerous path. All we have is a few case reports from Burzynski that do not bear much scrutiny (read this oncologist’s summary). This is the sales pitch of the clinic, not evidence of effectiveness. One blogger looked at all the media coverage of fund-raising for Burzynski and said, “In fact, every single patient that I have found in media coverage of Burzynski for the past 10 years, with a sole exception, is dead.”
It is unlikely that the Observer will respond with a better article. They have form for not backing down when they report dubious alternative medicine claims (MMR). It would have been nice for future parents of very poorly children to see the Observer cover the risks of choosing such unconventional routes. But instead, they will see a myriad of well researched, compassionate and thoughtful articles on blogs when they do research on the internet, as they undoubtedly will. And that unfortunately, makes the Observer redundant. And in a time when newspapers are struggling to cope in the digital age, I cannot see how that is a good thing.