Burzynski: A media scandal

By Josephine Jones

An increasingly unwieldy list of well known serious legal and ethical issues has done nothing to stop the British media reporting on Dr Stanislaw Burzynski in an irresponsibly biased way. Such articles usually appear in the local press, though have also featured on ITV Daybreak, in the Daily Mirror and The Observer. They are always emotive, always full of hope and are presented from the point of view of families wishing to raise funds for ‘life saving‘ or ‘miracle‘ treatment. In doing so  – though of course they don’t see it this way, the media are effectively promoting the Burzynski Clinic.

When concerns are pointed out, heads are stuck deeper into the sand. Editors insist they are simply supporting a desperate family at a difficult time. They may even convince themselves that in mentioning that the treatment is ‘experimental’ or unproven, they are adequately reporting criticism of the clinic.

Critics are often accused of being heartless and sanctimonious. I don’t just refer to unnamed Twitter users, but also to people like the deputy editor and readers’ editor of The Observer, whose exaggerated reporting on critical bloggers left me feeling angry and personally insulted.

The latest newspaper to adopt this cowardly approach is the Reading Post, who have run a series of articles in support of a local family’s fundraising campaign. When I suggested to them that this kind of reporting is irresponsible, biased and misleads readers, I was told:

@_JosephineJones Our readers, and the family, are well aware of the surrounding issues. Faced with awful situation what else can you do?

The family may well be aware of the surrounding issues. I hope they are and that they have come to a properly informed decision. However, the vast majority of Reading Post readers will be totally unaware of the depth of the problem – or indeed the sheer number of problems. I can say this confidently as I know full well that the Reading Post have not reported them. They told me:

@_JosephineJones We have done more than one story. See:http://bit.ly/Jd0JSn especially comments from dad, below.

I assume that was the most balanced article they could find. It is entitled “Amelia’s appeal for a miracle cure”. It describes the treatment as ‘experimental’ and states that antineoplaston therapy aims to “target the cancer without destroying normal cells”. I believe this misleadingly implies that the treatment is new and pioneering and that side-effects are minimal or non-existent. If I didn’t already know such a complaint would be a complete waste of time, I may even consider writing to the PCC. Although later comments (including one from Amelia’s father) address at least some of my concerns, I think it unlikely that the vast majority of the Reading Post’s readership will have seen them.

In challenging the Reading Post on Twitter, I was – predictably – shouted down immediately by @BurzynskiSaves, an anonymous and prolific tweeter and keen follower of the #Burzynski hashtag. Although this person claims not to be employed by the clinic, s/he discusses conversations with current patients:

@_JosephineJones I will share this w you 4 what its worth. I’ve been on the phone w pts who’ve sobbed over ur actions. U know not what u do

@_JosephineJones not according to the cancer patients & their families. I swear if u heard their voices over this u would delete everything.

In fact I have sobbed over my actions myself. Patients and their families have my full sympathy and I’m in no position to criticise their decision to go to the clinic. To be accused of attacking patients gets on my nerves and to upset them breaks my heart. But I’m not the villain here.

Patients and families who decide to use the media to raise money for their cause are putting themselves in the public eye. Newspapers may wish to support such causes, but they also have a duty not to mislead their readership.

Kind-hearted members of the public wishing to support these desperate families ought to know where their money is going. Cancer patients watching well meant but biased media coverage could be persuaded to look into having treatment at the clinic themselves. This is how the media are promoting Burzynski.

I hope that such patients are not under any illusions about what their realistic chances of recovery actually are and that they are made fully aware of the side effects associated with the treatment. I suspect that this is not the case.

Jennifer Keane discusses patient choice and informed consent here, where she concludes that

Patients deserve information, not infomercials.

If you’ve not read the whole post already, I recommend that you do so. It strikes me that those standing up for the clinic (whether they be patients, their families, anonymous Twitter users or journalists) are either not willing or not able to objectively assess dry facts or to recognise what is reliable evidence and what is not. As convincing as they may be, patient testimonials are emphatically not reliable evidence.

Dr Burzynski has been using antineoplastons for over three decades and has still not published any real evidence the treatment is either effective or safe. He has not had a single paper published in a respectable peer reviewed journal. Patient testimonials are all that supporters of the clinic have got. And they continue to use them even after the patients have died.

But some testimonials are less welcome. Wayne and Lisa Merritt set up a blog to share their experience of the clinic and received threatening emails from the infamous pseudo-lawyer Marc Stephens as a result.

Others have gone to the press. Following the death of her husband, Edward,Michele Price spoke to the Houston Chronicle. She said that Dr Burzynski had given them false hope that the treatment was working. He insisted that MRI scans showed the medication was working, even after other doctors had broken the news that Edward’s condition was terminal. The fact that the couple first contacted the clinic after watching a glowing report on CBS television’s ’48 Hours’ is a clear example of how the media promote the clinic.

Others have gone to the courts. I mentioned this to @BurzynskiSaves as part of the Twitter exchange mentioned above. I was invited to

@_JosephineJones show me more than one patient suing Dr #Burzynski

In fact there have been several instances where patients or their bereaved families have taken Dr Burzynski and his companies to court.

The most obvious example is Lola Quinlan, whose case has been fairly well documented. She told a local news source

I’d like to see them shut down.  That’s my hope, that he can’t do this to anybody else

She said she was drawn to the clinic by a video advertisement on their website, and she was hoping the so-called ‘magic bullet’ touted by the clinic would improve her condition.

It was so perfect that I couldn’t even believe it because they weren’t going to do the chemo, they weren’t going to do the radiation, they weren’t going to take anything out

Lola Quinlan is not alone. There is another lady – Robin Reid, a stage IV breast cancer patient, named in court documents alongside Ms Quinlan. According to their First Amended Petition (a public document which may be viewed on the Harris County District Clerk website), Ms Reid was induced by Burzynski’s promises and assurances to undergo radical cancer treatment services in lieu of traditional treatment. She alleges that the treatments were not FDA approved (as Dr Burzynski and his clinic had claimed). She says that the treatments did not work (as they had promised). She did not receive all the treatments she had paid for, nor was she refunded. The phenylbutyrate treatment also caused a huge strain on her liver. An oncologist from outside the Burzynski Clinic later told her she should never have taken phenylbutyrate tablets because of the risk to the liver. Furthermore, representatives of the clinic failed to return numerous calls during a time when she was experiencing excruciating pain.

There are more. For example, Dr Burzynski made a $300,000 settlement with Stanley and Bernice Zabodyn – a couple whose daughter, Kay Wimberley, died of cancer following unsuccessful treatment at his clinic. They believe that the treatment increased her pain and hastened her death.

In addition to these, the current Texas Medical Board case also contains details of two further patients who were alleged to have been treated negligently (Patients A & B) . The case does not make pleasant reading and could even result in the revocation of Dr Burzynski’s licence to practise. Details include failing to discuss details and side effects of the cocktail of apparently randomly prescribed drugs, failing to encourage a patient to complete a course of radiotherapy, failing to discuss the lack of efficacy of treatment (as had been demonstrated by MRI scans) and failing to discuss alternative treatment.

To those accusing me of not caring about patients: I do this because I care. As I’m sure did Michele Price, who recounted the final months of her husbands life, frequently breaking down in tears. She told the Houston Chronicle

Maybe I’ll deter someone else from making a bad decision. And it was a bad decision.

These stories have not been reported by the British media. If their reason for regurgitating the dubious words of Dr Burzynski and his supporters is that they care about patients then where are the articles about Lola Quinlan? When will we read about Robin Reid? Why has there been no mention of Wayne Merritt, Edward Price or Kay Wimberley? What about Patients A and B?

Lazy and cowardly journalism do real harm. It’s time some heads were pulled out of the sand.

Headlines? Spit!

By John Richards

These are a couple of recent headlines and, ok, they are not quite in the ‘Freddie Starr ate my Hamster’ category but don’t we often see headlines that annoy because of their scientific inaccuracy?

Strange Fruit Kills Fat

Four Foods that Kill Fat and Seven Food Chemicals that Cause it.

Yes, a headline has to catch the eye and lure a reader into the article and, yes, they have to be short – four or five words is best, but do they have to be so unscientific?

It’s just so wrong to write about fat being ‘killed’. If you had excess blubber would you want it to become dead excess blubber? Imagine carrying around kilos of dead tissue! What would happen to the blood supply that used to nourish the fat? Of course, anything that really did kill fat would probably work by poisoning mitochondria. So it would certainly kill protein and therefore the person eating the foods himself!

As for ‘chemical’ well, of course, all matter is chemical, including food and you and me. Have they created a new, alien type of substance: ‘food chemicals’? Which universe are they to be found in?

It’s not as if it’s difficult to do better. What would be wrong with ‘Four Foods that may Reduce Fat and Seven Additives that may Increase it’?

Apart from the loose use of words, there is the unjustified level of certainty that a headline often conveys. Journalists seem to have no understanding of two things: firstly, how research tends to result in indications (and more questions) rather than answers and, secondly, the time it takes to get a potential new treatment to become a licensed medication.

There are several examples of reported “miracle cures” which treat everything from dyslexia to cerebal palsy and  cancer. Now while we’d all like to be the Scientist who deserves the headline ‘Cure for Cancer’ those few words imply inaccurate assumptions. Cancer is not one thing and so there is unlikely to be one cure for it. Just the addition of a question mark would solve the problem.

Headlines that trade caution for certainty headlines raise false hopes amongst the sick who may not realise that promising research results are unlikely to be turned into a treatment for ten years and they may not survive to benefit.

We have also seen similar before with the “Medias MMR Hoax" where the press whipped up a media frenzy about the Measles, Mumps and Rubella vaccine which led to dangerous drops in vaccination rates. When it became apparent that the medias scare story was over-hyped what did the press do? They turned on Andrew Wakefield (to give him his full medical title) and blamed him solely. When taking stock of their own actions and complicity in spreading the story uncritically might have greatly improved health journalism. However scares like this are still whipped up by journalists with a lack of expertise in interpreting medical research.

We are now in an era when Bath Christians’ claims that ‘God can Heal’ got banned by the Advertising Standards Authority (and MPs have since lobbied to have this ruling overturned!) how much longer before higher standards of literality are going to be insisted upon from journalists?