Tag Archives: patient protection

Arguing With The BBC and The Observer about The Burzynski Clinic Of False Hope

20 Dec

The BBC are making weird statements that don’t make any defence about their Burzynski Clinic fundraising promotional article.

They don’t really give enough space in their complaints box for my to present the evidence so it’s kind of tricky.

I complained:- 

The Burzynski Treatment is harmful, by association uncritical articles in the media only serve to promote this harmful treatment. I am aware the editor has responded previously with ‘we feel readers can make up their own minds’ however the BBC article does not provide enough facts for readers to make up their own mind. Nor does Burzynski’s website, movie or other advertising, which would be illegal in UK.

This treatment is not provided on the NHS as it has no evidence of efficacy. In fact the treatment has been studied since 1958. Burzynski himself has run 61 clinical trials on the treatment, however he has failed to publish full peer reviewed papers since 2006. His past papers have failed to demonstrate efficacy but have demonstrated side effects.

Burzynski is under review by the texas medical board, which will likely revoke his licence as burzynski uses chemotherapy, off label, in large doses with no regard for drug interactions or side effects. He also charges a 1253% mark up on some of these drugs, not stating that they could be bought cheaper elsewhere.

The FDA issued a warning to Burzynski in 2009 due to his ethics committee having no regard for patient protection or wellbeing.

The treatment is illegal unless used in clinical trials, yet burzynski does not publish results of his clinical trials – paid for by patients, instead using them as a way to continue using his treatment. It is irresponsible and immoral for the BBC not to make this clear to readers.”

Unexpectedly, they failed to understand this complaint and continue to issue the type of illogical defensive reply I’d already told them not to bother with.

“Many thanks for your comments. Our report is about the family’s circumstances and is a much broader story than a feature simply about treatment they have elected for their daughter to receive. We are not suggesting the treatment works or promoting it. We simply include the fact that they are attending this clinic as a matter of record.  We make it clear that the treatment comes in the form of a clinical trial and note the family’s initial scepticism. As well as a link to the institute, we link to a cancer research website which lays out some of the objections which have been raised to the claims so I believe we do provide enough facts for readers to make up their minds about the treatment should they wish to explore that issue . I hope this is helpful. Your comments are much appreciated. With best wishes, Laura Ellis, Head of New Media BBC English Regions”

Apparently not mentioning legal action taken by the Texas Medical Board against Dr. Burzynski is fine, the fact the Buryznski may be stripped of the title ‘Dr’ in a few months holds no importance to people deciding whether or not to undergo his cancer treatment, according to the BBC. Clearly, a link to the TMB stating why they are taking him to court is a reasonable request?

The link the response mentions on antineoplaston therapy by the Cancer Research UK is not even the most recent update about Buryznski’s cancer research…which is actually this link – which highlights much more of the issues than the BBC article or any link it provides does.

I’m not sure how they could possibly fail to understand these complaints. Professor Steve Jones and BBC Trust Review Of Impartiality and Accuracy of the BBC’s coverage of science states that:-

“the Trust welcomes the fact that the Executive in its response is open to the suggestions for improvement that the report makes, has set out steps towards this and plans to monitor their efficacy. In particular, as set out below, the Trust is concerned that new editorial guidelines on “due impartiality” (introduced in 2010) are used appropriately and effectively in science coverage. Programme makers must make a distinction between well-established fact and opinion in science coverage and ensure the distinction is clear to the audience.”

Which the above BBC has quite clearly failed to do. As they state in that report they will do their utmost to meet those standards suggested it seems quite strange how reluctant they are to do so in this instance, sure it may be more about TV coverage, but it’s clear it can be applied to news journalism, online and in-print, too.

The MHRA also issue guidelines for journalists which state:-

“Yet the advertising legislation prevents these medicines being advertised to the public and the law applies to ‘any person’ – not just pharmaceutical companies. So what do journalists and patient organisations need to do to ensure they stay within the law when writing about medicines? Reporting information fairly and accurately while ensuring a balanced view is represented is paramount. Paying attention to these will help ensure the ban on advertising prescription medicines does not become an issue. The bottom line is – keep it factual and balanced to keep out of the advertising controls.”

So to me the BBC article fails to do this, since it states that the parents believe Burzynski’s treatment will work and it also states that Burzynski believes it will work and even goes into detail about how it works and what it’s aim is, despite there being no evidence that it works, let alone how. Despite contrary evidence the article includes a statement that the treatment doesn’t harm other cells. The BBC basically say it’s non-toxic, despite the fact Buryznki’s own published research (usually from unfinished clinical trials) states that it is (although his advertising says that it isn’t). The article also suggests that it is a ‘natural remedy’ which it isn’t, really. Sure, it used to be derived from urine, but it’s now chemically manufactured in Burzynski’s lab. On top of that it’s actually the orphan drug sodium phenylbutyrate. Which actually means ‘natural therapy’ types supporting this treatment, such as the alliance of natural health have been conned into literally becoming ‘Big Pharma Shills’. This treatment has been being studied since 1958, it turns out and Burzynski didn’t invent it, like he claims he did.

The only ‘critical’ line in the BBC article basically says ‘there was some skepticism but they are confident now’.  On the whole I believe the article fairly clearly suggests that the treatment works, that the skepticism was abolished through some evidence or the skepticism was overcome by some logical and justified means – except a study of the evidence suggests that this is not the case. I like the argument that including a link to the clinics website provides information – a look at the advertising, suggests it may have been this that was persuasive to the parents choosing the treatment, rather than evidence. I’ll note again that this advertising would likely be illegal in the UK under the Cancer Act (1939), which prevents the exploitation of vulnerable and desperate patients.

Perhaps you could argue that the article only implicitly  and unintentionally is biased towards supporting the treatment. However, the problem remains that the article didn’t provide any counter evidence to it’s implicit suggestions. 

There’s no evidence Burzynski’s treatment works. It doesn’t seem to me like throwing in a few facts like that into the article would be very difficult, or irrelevant, especially when details of the treatment are mentioned in the article. There’s also evidence the treatment causes some very serious side effects, including brain swelling and death. It seems like this information might be an important factor in patients ‘making up their own minds’. So why is the BBC avoiding the seemingly, rather simple solution, which would certainly would stop the bother of people saying it’s biased and wondering whether or not it falls foul of the law?

Weird.

I’ve responded with a further complaint. We’ll see what they say to that. Hopefully I’ll put my further complaint and their reply here praising the BBC for taking some responsibility for their journalistic error and not mocking a completely useless, flimsy, laughable excuse-of-a-reply like this time. 

I also responded to The Observer, who released a really weird statement about the very high quantity of complaints they were getting about their similarly credulous article.

Subject: Recent Defensive Article About The Burzynski Clinic – Is It So Surprising That People Are Concerned About Those That Intend To Exploit Vulnerable, Desperate and Ill People With Terminally Sick Children?

E-mail:

“It is the stuff of nightmares. While her mother was undergoing chemotherapy for breast cancer, four-year-old Billie Bainbridge fell ill and was found to have an inoperable brain tumour. All the odds seemed stacked against her surviving beyond 18 months. Faced with such an appalling prognosis, the Bainbridges did what any family would do – find any way possible to prolong Billie’s life.”

All too understandable and true EXCEPT there is a very important ethical issue about parents and doctors being involved in prolonging low quality of life or providing high quality of life but not providing treatments which are deemed futile. There is no evidence to suggest that the Burzynski clinic’s activities can prolong life or enhance the quality of life. There is some question then about whether this treatment will be of benefit or a harm to Billie Bainbridge. Whilst it may momentarily please the parents to feel they ‘did all that they could’ they may also end up regretting making this choice because it meant losing time with their child and noticeably lowering her quality of life, they may also go the other way, when they lose their child, having been convinced of Burzynki’s propoganda they may feel that it is their fault and that they did not do everything that they could to protect their child. Either of these outcomes will of course will be devastating to them. The point is that it isn’t their fault. Burzynski’s treatment has no merit and cancer is indeed a cruel disease. It is however Burzynski’s false hope built on pseudoscience that prayed on that families vulnerabilities and fears and which took advantage of them, getting them into that position, leaving them doubting conventional treatment, making them feel like they had to do more and ultimately, when it doesn’t work, leaving them feeling as if they are to blame and responsible. This is surely not acceptable? To be clear I am arguing in favour of providing all the emotional support for the Bainbridge family and care for Billie that they need, though at times this may mean protecting them fro fraud’s. Perhaps it is too late now. Perhaps they made their choice and they are happy with or at least determined to stick with it. On these things I do not believe anyone wants to interfere. Although some would certainly like to fully understand the reasons why, what evidence they saw, what evidence they were missing and how they felt about a variety of different issues (that they may have known or not known about), it is clear that the person who should have asked these questions is their doctor, and that should have been done in a supportive, professional, caring and sensitive setting. It is clear now that the Bainbridge family are going through a very tough time. The complaints about the Burzynski clinic are not directed at the Bainbridge family nor are they intended to be insensitive to their plight. To suggest that this is the intention is in fact highly offensive to me.

Indeed it would appear that the original report was in violation of The Cancer Act (1939) and went against MHRA guidelines for uncritically promoting a clinic which has an unproven therapy, fails to protect patients in it’s clinical trials and throws up a whole bunch of patient protection issues.

“Dorothy Bishop, professor of developmental neuropsychology at Oxford, wrote to warn that Dr Burzynski’s methods are not recommended by cancer experts in either the UK or the US. “The reason the treatment is available in the US appears to be because ethical regulation is far laxer there than in the UK. Any person who wishes to sell an unproven treatment to patients can do so by describing it as a ‘clinical trial’.”
Cancer Research UK ran a blog offering sympathy to families in this cruel situation, but expressed concern that “people are lured by promises based on an unproven therapy. At the moment, there is very little solid scientific evidence to show that antineoplastons are effective at treating cancer, and virtually all the research in this area has been carried out by Burzynski and his team – a red flag to the scientific world.””

These paragraphs are most excellent. A win for all of those who complained.

“Undoubtedly, the Observer was wrong not to have included criticism of the treatment. A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article,”

Indeed. Fully agreed. This is the main point of pretty much all of the complaints.

“but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested”

Well it was, wasn’t it. It claimed the treatment might cure Bainbridge’s cancer, that NHS wasn’t providing it and that they needed £200,000 for it and all they help they could get to go to this pioneering maverick doctor. It was complicit in the ‘there’s a cancer conspiracy’ advertising that Burzynski uses to promote his treatment, implicitly at least, if not explicitly, though it’s support of The Burzynski Clinic was certainly explicit and there certainly wasn’t a single critical thing said about it in that article. Indeed, this was, no matter how unintended it may have been, a promotional piece for Burzynski and could easily lead others into forgoing conventional cancer therapy, or otherwise spending their lifesavings and last days undergoing Burzynski’s useless treatment.

This is the worry of all of those that have complained to the observer.

Those that have complained are patient advocates, fighting for patient protection against a practice which has been successfully charged for the defrauding of it’s patients. A clinician which will probably lose his medical license in April next year due to the illegal and harmful cocktails of drugs he provides, without informed consent and with no declaration of interest.

This is a story about the exploitation of the courage and generosity of thousands of people and The Observer has played a complicit role in this. The final words of the editor were too defensive. This (non) apology has ended up sounding self serving, self aggrandising, defensive, with a blatant disregard for the facts.

The paper has mentioned ‘there is controversy’ around Burzynski’s clinic but has absolutely failed to discuss what this controversy is. There are in fact a whole variety of legal and ethical issues that concern The Burzynski Clinic, and which are in the interest of the public, yet The Observer continues to gloss over these. It’s interesting to note that 100+ bloggers have covered the Burzynski story in far more detail, far more balance and far more sympathy than your newspaper has.

And here lies the final point”

“Luke Bainbridge told me: “From the start, Billie’s parents knew this treatment was experimental and has attracted scepticism but they were encouraged by the fact that the trials at the clinic are approved by the US Food and Drug Administration and that Billie would still be monitored by her specialists in the UK. Her parents 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. Knowing this, Billie’s parents felt they couldn’t sit back and do nothing if there was a small chance this treatment would save her life.”

This again is entirely understandable. Nobody suggests that Billie’s parent’s are wrong for choosing Burzynski’s treatment, his flash advertising, his emotionally manipulative film and testimonials, his long list of publications he cites to claim efficacy which all turn out to be either conference abstracts which are non peer reviewed , or poorly conducted peer reviewed trials which suggest the treatment has no efficacy once you actually dig them out and read them…if in a moment of desperation after seeing all this, who wouldn’t turn to Burzynski’s miracle treatment? And of course they say they choose it understanding full well the controversy surrounding the clinic…then fine, publish what that controversy is. If they understand the controversy so well what’s so upsetting about revealing it? Surely this will help others to make a more informed choice and not make the same mistake?

To be honest the Bainbridge family are the last people that need to comment on the Burzynski Clinic and it’s treatment. They have done their best. Why drag them into it? The person who has been targeted however is Burzynski. The sole responsibility lies with his advertising and promotional material, the way in which he conducts clinical trials, the in which the results are not reported, they way in which he charges extortionate amount for treatment, the treatment which he uses, the illegal way he uses chemotherapy off label and charges excessive amounts for it, the unethical way he charges patients to take part in clinical trials.
It’s no surprise people turn to someone claiming to have a miracle cure. It is a surprise to see anyone publicly and promote such practices as outlined above however.

So lets talk sensitivity, again.

My family have been affected by cancer. Indeed, it is people like these that I and others are sticking up for. With it affecting roughly one in four of all people, it is insensitive of the observer to call those who stood up against this treatment in order to increase patient awareness sanctimonious, aggressive and vitriolic. We do not want our friends, families and loved ones being taken advantage of. We do not want them seeing uncritical pieces in The Observer and believing there is a miracle wonder clinic out there, only to have their hopes dashed when they see the evidence. We do not want them to be robbed of their life savings or to spend their last months miserable, suffering unwarranted side effects (one of the things Burzynski is going to trial for), with their hopes dashed, money gone and quality of life severely reduced. Support of the Burzynski Clinic is also a slap in the face to all of those who undergo conventional cancer treatment – due to Burzynski’s completely made up ‘cancer conspiracy’ advertisements, film and book. It is upsetting to all of those that research cancer, that deliver cancer and palliative care.
If you want to talk about courage, generosity and kind hearts then why not talk about all of those standing up for patient protection, researching ethically and professionally what treatments do and do not work, publishing their results in peer reviewed papers, and staying with such patients in the last months and hours of the patients life, ensuring suffering is minimised and care is kept at a high quality level? What about those heroes?

Here is a quote from Kat Arney at Cancer Research UK:-

“To suggest that there is a conspiracy aimed at depriving cancer sufferers of effective treatments is not only absurd, it’s offensive to the global community of dedicated scientists, to the staff and supporters of cancer research organisations such as Cancer Research UK, and – most importantly – to cancer patients and their loved ones.
We have all lost friends and family to cancer. And our loss fuels our passion to beat this disease by finding out what really works, through scientific research”

http://scienceblog.cancerresearchuk.org/2011/07/06/there’s-no-conspiracy-sometimes-it-just-doesn’t-work/

It is understandable that the editor of the observer would be defensive for coming under attack. However, the attacks were justified and fair. We do expect journalists to do some research into the topic. It is harmful to patients when they do not.

Next time do not dismiss the concerns of your readings as being insensitive. It is that itself which was truly insensitive and sanctimonious.

Currently it appears that The Observer has learned nothing since the MMR debacle. 
Please try again, and this time at least try to understand why the public are so concerned about these uncritical reports and why they need more information about this controversy. Perhaps it would be better if you got someone who wasn’t related to the family, nor the father of a band member that has raised funds for this clinic to conduct a more professional investigation into this clinic and produce a more balanced article?

Thanks.

The Observer have issued no further reply, although others have complained about his response too, see here for a collection of complaints and here for the quackometer response, calling the editors reply a disgrace.

Also The Evening Standard have done a similar thing. Here’s a good article about someone complaining to them, getting a really crap response and explaining further why the article is irresponsible, immoral and unethical.

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