If the media care about Burzynski’s patients they must pull their heads out of the sand

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.

Related articles

COURTS/POLICE Houston Chronicle Archives, 04/03/86

Woman’s faith in doctor faded as husband’s health failed Ruth Sorelle, Houston Chronicle Archives, 05/01/97

BURZYNSKISCAM.COM Wayne & Lisa Merritt

Real life: I’ll do anything I can to stay alive for my baby Alison Smith-Squire, Daily Mirror, 27/05/11

The worst year of my life: cancer has my family in its grip Luke Bainbridge, The Observer, 20/11/11

Texas Medical Board vs Burzynski Unity, Ministry of Truth, 28/11/11

The readers’ editor on… kind hearts and a cruel illness Stephen Pritchard, 04/12/11

Burzynski critics respond to The Observer Readers’ editor Josephine Jones, 05/12/11

Cancer girl’s £130,000 plea for life-saving operation in US Rob Parsons, London Evening Standard, 14/12/11

Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV Andy Lewis, The Quackometer, 21/12/11

Cancer Patient Says Doc Used her as ATM Cameron Langford, Courthouse News Service, 19/01/12

PCC rule that Evening Standard Burzysnki article did not breach the Editors’ Code Josephine Jones, 27/01/12

ITV’s Daybreak describe Dr Hilary Jones’ comments on Burzynski as ‘studiously neutral’ Josephine Jones, 27/01/12

Board Orders, SOAH, STANISLAW RAJMUND BURZYNSKI, MD Texas Medical Board (see “09/02/12″ for amended complaint)

Lola Quinlan vs Stanislaw Burzynski MD, Burzynski Clinic, The Burzynski Research Institute, Inc and Southern Family Pharmacy, Inc District Court of Harris County, Texas 18/01/12 (posted by Peter Bowditch, The Millenium Project 20/02/12)

Amelia’s appeal for a miracle cure Vicky Smith, Reading Post, 07/03/12

Burzynski and Patient Choice Buffy, And another thing…, 12/03/12

Burzynski’s Ghosts Keir Liddle, The Twenty-First Floor, 22/03/12

Burzynski: Toxic Treatment? Keir Liddle, The Twenty-First Floor, 09/04/12

Danyl’s songs for Amelia’s Miracle Paul Cassell, Reading Post, 26/04/12

19 responses to “If the media care about Burzynski’s patients they must pull their heads out of the sand

  1. Pingback: Dr Burzynski to miss out on Birmingham Cancer Convention as he feels unable to come to Britain | Josephine Jones

  2. I think it’s fair to say the media for the most part care neither for Burzynski nor those looking for hope; whom Burzynski exploits. The media themselves have a situation here to exploit for their own profit, so never mind who gets hurt.

    If Burzynski is ever prosecuted and put behind bars (which would be fair) the same news media will be reporting how a charlatan took advantage of the families and friends of poor kids suffering from terminal cancers. And they’ll be drivelling on about how despicable he is, etcetera, etcetera.
    I can hear Dr Hilary Jones’ dulcet tones now, with all its false sincerity and unctuous bedside charm, saying how terrible it all was and how someone should have done something about it… and how cancer patients should not be taken in by quacks, blah blah…

    But in the meantime the media’s preferred narrative is, how can we not raise hundreds of thousands of pounds in order to provide “hope” to these poor sufferers. And how can they (the media) wring enough mileage and revenues out of promoting heartbreaking stories of kids and loved ones dying prematurely.

    Either way it’s a train wreck, and it’s win/win for the media. The media loves train wrecks because the public (who are better kept ignorant and in the dark until such time as suits the media) are absolutely addicted to them.

  3. Thanks for keeping the faith with the truth, Josephine Jones.

  4. Pingback: Burzynski blogs: My Master List | Josephine Jones

  5. Sorry, but you are the bigot here, Ms. Jones.

    Dr. Burzynski has done absolutely nothing wrong, and has been absolved in FOUR previous investigations. He has suffered constant harassment by the Texas Medical Board, which has admitted that their actions were spurned by the FDA.

    As most Americans are aware, the FDA is in bed with major pharmaceutical interests, whose executives would rue the day any efficacious cancer treatment might supplant their own worthless and/or dangerous remedies. In fact one such corporate interest attempted to patent one constituent of Burzynski’s antineoplastin formula, behind his back! It’s all about the money here – not about “public health” or healing!

    Further, 30% of patients who were otherwise given a “death sentence” have gone into complete remission with Dr. B’s treatments, which are completely non-toxic. What pharma can boast the same of their own poisonous products?

    I strongly suggest you “do your homework” on this subject, or your readers should consider that you might in fact be garnering some “consideration” for promulgating such libelous trash.

    • Can you provide any evidence to support your ridiculous claims?

    • Oh dear! Another Burzynski supporter shouts the odds but provides no evidence to support their claims. Seriously, if anyone thinks there is published evidence of benefit for Burzynski’s treatment they need to provide it. As Lincoln said “better to remain silent and be thought of as a fool than to open your mouth and remove all doubt”.
      As for “do your homework” – LOL! “Non-toxic” – apart from the severe hypernatraemia, renal failure and death, I guess so.

    • Wild, unsubstantiated claims. It’s what we’ve come to expect from Burzynski and his supporters.
      “It’s all about the money here – not about “public health” or healing!”
      You’ve got that bit right and it’s Burzynski who’s charging extortionate amounts of money for desperate and vulnerable people to take part in ‘trials’.

  6. Non-toxic? Really?

  7. Steve Hawkins (@Spamlet47)

    I have no brook with quacks, but I do believe that drug cos have a vested interest in finding treatments rather than cures, and that medical research should be an international open public search for cures proper. Whilst the drug cos call the shots, sadly, there will always be Burzynskis.

  8. Had I been aware of this article when I wrote the above post, I would have included Andy Cayon’s story:

    http://articles.courant.com/1997-01-12/news/9701120070_1_brain-tumor-stanislaw-burzynski-mainstream-medicine

    “Every month for six months, Burzynski showed Andy pictures of his brain and told him the tumor was shrinking. In October, Burzynski shook his hand and pronounced that the tumor had decreased by 84 percent. Andy was elated.

    A month later, with a Hartford television news program documenting his story, Andy returned to Houston, where Burzynski noted more progress.

    Andy was suspicious. In the waiting room, he had seen a report from the independent lab that interpreted his brain scans. All it said was the tumor was stable, no recurrence. But Andy still wanted to believe.”

    The Burzynski clinic were misreading the scans.

    “They were not measuring the tumor, they were measuring the hole where a portion of the tumor had been removed. What they saw as a shrinking mass was actually the healing from the surgery. The remaining tumor cells were just where Lantner had left them.

    Andy and Allison were devastated. It was a day before Thanksgiving. “It was like we were back in May, it was like six months wasted,” Andy said.

    First, they felt betrayed. Burzynski had offered hope. Now, they realized it had all been an illusion.

    He started calling the clinic demanding answers and a refund. Burzynski and other clinic doctors told him to get a second opinion. They have since stopped taking his phone calls.

    Dean Mouscher, director of clinical trials for the clinic, said Saturday that Burzynski still contends that Andy was doing well on the treatment and should have continued it.

    But even if it turns out that the treatment failed, Mouscher said, Andy went into it knowing there were no guarantees.”

  9. I also hadn’t been aware of Christina Bedient or Andrea Walsh when I wrote this post. They are mentioned in this 1998 article:

    http://www.usnews.com/usnews/news/articles/981005/archive_004873_4.htm

    On July 9, the parents of 11-year-old Christina Bedient, of Lockport, N.Y., filed suit against Burzynski and his clinic, claiming the doctors made misrepresentations to them about the efficacy of antineoplastons, “the effect that the treatment was having on Christina’s tumor, and about her prognosis.” They say they believed the alleged misrepresentations. They also claim that Burzynski and his clinic were negligent and treated their daughter “in a manner that violated the standards of acceptable medical practice.” Christina died June 17, 1996. Burzynski says the lawsuit is frivolous. “The bottom line is they signed an informed consent form,” he says. He says Christina’s “big tumor was decreasing” but that another tumor was increasing. “There was no negligence,” he says. “There was no treatment for this child. At the same time, we have patients who respond and whose tumors disappear completely, so there was [a] chance.”

    The case was also reported here:

    http://www.chron.com/CDA/archives/archive.mpl/1998_3068427/family-sues-burzynski-in-girl-s-cancer-death.html

    This case was settled in 2000 by “return of a small amount of the patient’s treatment expenses”:

    http://sec.edgar-online.com/burzynski-research-institute-inc/10ksb-annual-report-small-business-issuers/2001/05/02/section5.aspx

    In 1997, Andrea Walsh was diagnosed with a glioblastoma. After surgery, her doctors said chemotherapy and radiation might extend her life a few months, but no more. That August, Andrea’s mother, Jean, and her brother Bill took Andrea to Burzynski’s clinic, where they say they were told by a clinic doctor that antineoplastons could cure a third of glioblastomas. The Walshes borrowed $16,000 to start treatment.

    Over the following six weeks, Jean Walsh says, her daughter suffered side effects ranging from disorientation and high fevers to constant thirst. She and her husband, Tom, repeatedly complained to clinic personnel. Each time, she says, “the nurses were jubilant. They said this [side effect] was a sign the tumor was breaking up.” On September 22, an MRI scan showed that Andrea’s tumor had doubled in size, says her local neurosurgeon, Frank Boehm. He told the parents that Andrea had very little time left. Still, the parents say, a Burzynski clinic doctor insisted that the young woman come to Houston to be examined or she would have to be dropped from the clinical trial. Burzynski says that the clinic has no record of such a conversation. Andrea left on September 28 in the company of Mary Briggs, her best friend.

    After they arrived, according to Briggs and the Walshes, another doctor at the Burzynski clinic told the two women the tumor was dissolving. That doctor called Andrea’s parents on September 29, telling them the tumor was shrinking and their daughter would be back to work. “I can’t tell you how happy we were,” says Jean. She and Tom ran up their credit cards to come up with the $7,000 for the next month’s treatment.

    Andrea never made it home alive. On October 1 her brain swelled massively, just as her flight home was beginning its descent. Henry Friedman, a neuro-oncologist at Duke University, and Victor Levin, a brain-tumor specialist at MD Anderson Cancer Center in Houston, and Boehm, her neurosurgeon, say she should never have traveled any distance from a hospital emergency room. Counters Burzynski: “It’s not up to us; that’s up to the local physician.” Boehm says the Burzynski clinic never called to ask him whether Andrea was fit to fly.

    The patient history in Burzynski’s report to the FDA states that Walsh did not die under his care. She is listed as having withdrawn from treatment September 30, two days before she died. But according to the Walshes and Briggs, a nurse, Andrea was still receiving antineoplastons just before she boarded the plane. “If she withdrew, why was she carrying a suitcase full of the medicine?” Tom asks. Burzynski says he listed Walsh as having withdrawn on September 30 because that was the last day she was treated.

  10. Pingback: Burnley Express promote Gerson quackery | Josephine Jones

  11. The guy is a fraud. Quickly exposed by his own movie. Jodie Fenton who had an “inoperable” brain tumor says she also had “nothing but scar tissue” after Burzynski cured her”. This is a contradiction of her own statement. I tried contacting Amelia’s father and was told off. It is very sad that 200 000 GBP will got to a scam and not where it is needed. If you are serious about cancer and support, please read what I wrote here: http://www.news24.com/MyNews24/Lack-of-brain-cancer-awareness-cost-me-Astrocytoma-20121011

  12. Burzynski’s scam works partially because the glucocorticosteroids he uses actually render MRI scans illegible. They bugger up the contrast, and make tumours appear smaller.

    I refuse to believe that’s accidental.

  13. Compelling commentary of a disgraceful treatment. Your point that you criticise because you care is in sad contrast to the clinic who only seem interested in money.

    The media have shown little interest in facts when it addresses these sorry cases. Although the major papers are beginning to employ skeptics, regional and local press just don’t care a damn about the health of their readership. This is the irresponsible press that tell us they don’t need regulation, pathetic.

  14. Pingback: Science-Based Medicine » Three myths about Stanislaw Burzynski and The Skeptics

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