Whenever Alternative Medicine Is Mentioned

at

Jennifer Keane writes:

Whenever alternative medicine is mentioned, patient choice is championed, and the frequent refrain of “what’s the harm?” is heard; people with no hope are being given a second chance at life by “pioneering” treatments with unheard of cure rates, and anyone who questions the treatment is decried as cruel and heartless for stealing hope.

Hardly a week goes by without an article about a fundraising campaign for some alternative clinic, and this week is no exception – on Saturday July 14, both The Irish Times and The Irish Independent carried the story of Alexandra Burke-Costa from Effin, Co Limerick.

Her family are trying to raise money to visit a controversial clinic in Houston, Texas, run by Stanislaw Burzynski. The clinic purports to provide “targeted gene therapy” and uses antineoplastons, an unproven substance derived from human urine, to allegedly cure numerous forms of cancer with virtually no side-effects, and far fewer damaging effects than the standard treatments of chemotherapy and radiotherapy. The clinic has grown in popularity and become something of a mecca to people with incurable cancer, and this is in large part due to irresponsible reporting on the part of the media.

The Irish Times calls Burzynski’s treatment “advanced”, and the Irish Independent refers to it as “pioneering”, but neither report even pays lip service to the controversy surrounding the treatment, its efficacy, and the largely inflated cost, and if there is one thing that is certain about treatment at the Burzynski clinic, it is that it is controversial. 

It has been approximately 45 years since Burzynski discovered antineoplastons, approximately 35 years since he began treating patients with them, and approximately 24 years since that first presentation in which he discussed the clinical results of his treatment. This is an extremely long time to be testing a treatment without publishing significant results, moving further through the trial process, or reaching a stage where the product can be marketed to the general public (given that the FDA estimates that it takes approximately 8.5 years for a new cancer drug to reach the market, from inception, through trialling, and to delivery).

In short, there have been some bold claims made about antineoplastons, without any significant clinical research to support them. In addition to his antineoplaston therapy, the “targeted gene therapy” mentioned has, in practice, been anything but targeted. Patient blogs talk about Affinitor and Votrient (both chemotheraputic drugs) being used off-label, and numerous comments scattered across the web indicate a seemingly random pattern of prescribing chemotheraputic drugs (to be acquired from his on-site pharmacy, at highly inflated cost).

With such a question mark hanging over this treatment, it seems odd that so many outlets would report favourably on it (or shy away from mentioning the controversy), and yet each time Burzynski’s treatment is mentioned in the media, it is inevitably described as pioneering, advanced, unique, and at worst, experimental. These articles (and countless others like them) fail to mention the fact that the treatment is unproven, and instead focus only on the patients, before encouraging people to donate, but would people donate if they knew more about the treatment, its chances, and the often questionable actions of the clinic’s founder? Would patients still seek treatment if these articles did more to highlight the controversial aspects of the treatment?

People say that patients don’t care about data, journals, and technical data, and that may be true, but even if it is, patients do deserve the truth about their treatment, their prognosis, and everything associated with it. With scientific papers often seen as dry and inaccessible (both because of the content, and because of the expensive paid access required to read them), it can be easier to find that truth in a heart-warming cure story than in the data points on a graph, and this is why accurate reporting about alternative treatment providers is so important. A patient should absolutely have the right to choose alternative medicine over conventional treatment, but it is a poorly informed choice if it is based on infomercials, advertising websites, and unproven claims, and patients deserve accurate information to help them make their choice.

Each uncritical article published about clinics like the Burzynski clinic amounts to free advertising for a treatment which is at best, as yet unproven, and at worst, much more damaging than it is claimed. Though articles about individual patients and families must tread a careful line between criticism of the clinic and the feelings of those involved, the current standard of reporting on these clinics ultimately helps no one. It’s time to stop hiding the controversy, and sweeping it under the carpet. Patients deserve information, not infomercials.

Previously: That Cancer Appeal Story

39 thoughts on “Whenever Alternative Medicine Is Mentioned

      1. Steph

        The Independent and the Irish TImes. From what I understand the Times has taken it off the website now.

  1. LoocyLoo

    Who is Jennifer Keane, where was this published and what are her credentials? C’mon Broadsheet, don’t just stick something like this up on the site without telling us where it originated!

    1. Karl Monaghan

      It was submitted to Broadsheet by Jennifier. You can find her on twitter at @zenbuffy and she’s a blog at http://www.zenbuffy.com/ as well.

      I knew her years ago when we both were in Maynooth and she’s been actively campaign against pseudo science for a few years now.

      1. yourcommentisawaitingmoderation

        I was in Maynooth too. I didn’t realise there were other survivors! Dismal dismal place.

    2. Josephine Jones

      This post links to Jennifer’s own blog, where you can learn who she is and what her credentials are. This is not necessarily of huge importance anyway – since her post is clearly very well researched, with well reasoned arguments linking to sources.

    1. Steph

      I think it’s the essence of the article tbf. If you’re going to dispute someone’s scientific credentials there should at least be a citation of other work or proof of your own credibility. That said, having read many an article including both citations and a superbly qualified author, she’s right. The whole thing is highly suspicious.

      1. Domestos

        She’s disputing the lack of scientific credentials for Jehovah’s sake! “In short, there have been some bold claims made about antineoplastons, without any significant clinical research to support them.” You don’t need to be a doctor to see what the problem is here.

  2. Jennifer Keane (zenbuffy)

    Hi,

    I’m the author. I sent the piece directly to Broadsheet, though I believe it will be up as a guest blog today on the Guardian (and I’ll link it here if that pans out). I have a double honours BSc in Biology and Computer Science from NUI Maynooth, and I’m currently studying for my MSc with the Open University. My studies this year focus on science communication, which is a particular area of interest for me. I normally blog at my own site, http://www.zenbuffy.com and can be found on twitter as @zenbuffy

    I hope that clears some things up!

    1. Admin

      Heh, a bit more detailed than my comment and a minute earlier! I’ve updated the post with a link to your blog to fend off more questions about who you are.

    2. Paul Q

      Great, necessary piece, well done Jennifer.

      Such a sad story, it’s that bit harder to cover when there’s so much goodwill and hope involved (on the part of the community in Effin). But the salesman in Texas takes advantage of all of that goodwill and hope. Someone has to call him out.

      Of course, I bet the Burzyanski clinic has a whole barrage of strategies to keep potential clients from getting swayed from people who question its credentials.

    3. Sminkypinky

      Well thanks, anyone who highlights the snake-oil salesmen gets my vote.
      Those who concur will enjoy reading ‘Bad Science’ by Ben Goldacre.

  3. iva hoogeone

    I wonder what happened to Keith Gibbons who went to the Burzynski Clinic

    You are > Home > Keith Gibbons dies following battle with brain tumour

    21 December 2011

    Keith Gibbons dies following battle with brain tumour

    Mayo man Keith Gibbons was laid to rest in Galway yesterday (Monday) after a long battle against brain cancer.

    Keith, who had family connections in Claremorris and Foxford, was first diagnosed with a brain tumour five years ago, but put up a courageous battle in the face of the debilitating illness. When the tumour returned earlier this year he travelled to a clinic in the United States where he received treatment at considerable cost. A fundraising campaign was organised by friends after Keith’s insurance company refused to cover the cost of the alternative treatment.

    On his return from America, Keith developed further complications and his health deteriorated rapidly in recent weeks. He passed away on Friday surrounded by family and friends.

    Taken from Western People newspaper.

    News | Sport | Business | Farming | Entertainment | Community News | Obituaries
    Archives | Advertising | Contact Details | Subscriptions | Privacy Statement | Terms of Use

    © Western People Limited, Tone Street, Ballina, Co. Mayo. Registered in Ireland: 49627.

  4. Paul Morgan (@drpaulmorgan)

    I saw the story in the Irish Independent and felt saddened and frustrated as yet another family, desperate for a cure for their sick child, get duped by the slick marketing of the Burzynski Clinic. I wrote a response on their website – it wasn’t published. A comment – also critical of Burzynski was posted by a Cardinal. I resubmitted my comment – not only did it not get approved but the Cardinal’s comment also disappeared and the opportunity to comment was removed.
    Jen has written well on this subject here and elsewhere. I wrote a blogpost about this http://drpaulmorgan.posterous.com/another-family-seeking-a-miracle-but-why-wont
    If poeple consider my article even half as good as Jen’s writings, I will be pleased!

  5. Paul Moloney

    Here’s one case of Burzynski being sued by a patient who accused him of treating her like an ATM:

    http://www.courthousenews.com/2012/01/19/43165.htm

    “An elderly cancer patient claims a doctor used his clinics and pharmacy to bilk her of nearly $100,000 by persuading her to undergo a proprietary cancer treatment that “was actually a clinical trial,” and charging her $500 per pill for drugs she could buy elsewhere for a fraction of that price.

    ….

    She claims that Burzynski and his companies “coerced Ms. Quinlan to purchase certain prescription from Southern Family Pharmacy Inc. at outrageous prices. She was not allowed to fill the prescriptions at any other pharmacy. Southern Family Pharmacy is owned by Stanislaw Burzynski, a fact also not disclosed to Ms. Quinlan.”

    The litany of complaints goes on: “The Burzynski defendants pushed a noninvasive yet effective cancer ‘treatment’ with antineoplastons that would last two to three weeks. The ‘treatment’ was actually a clinical trial, a fact never disclosed to Ms. Quinlan. The Burzynski defendants billed Ms. Quinlan’s insurance carrier for some of the ‘treatments,’ but never told her a majority of the costs would not be covered by insurance.”

    Perhaps Ms. Quinlan is being unfair. Monogrammed security gates _are_ expensive, after all:

    http://www.tanoro.com/blog/05132012-stanislaw-burzynski-millionaire

    P.

  6. Stephen R.

    Great response, thanks for writing this, Jennifer! The more people talking about the problems with Burzynski’s treatments the better.

  7. FromTheWaist

    To address the focus of the article; while I have not been able to read the Irish Times piece (it has been removed) I totally agree that the reporting in the Independent is shocking. It is at best a begging letter, at worst an advert for the Burzynski clinic (although they manage to misspell his name, “got in contact with the Buzynski Clinic in Heuston”, so perhaps that will confuse people a little).

    If the Independent article was an opinion piece or an editorial I’d be less annoyed to be honest but it is a under “You are here: Home > National News”! With bank details for donations and all…

    Good article Jen.

  8. Jennifer Keane (zenbuffy)

    Thanks for all of the comments! I have done my best to be sensitive to the issues involved, and I know how tough it is for the family. My dad died quite recently when his cancer returned after just 5 months remission, and proved to be very aggressive and chemo-resistant, so I know what it’s like to see someone you love deal with cancer and chemo side effects, and what it’s like to receive the unfortunate news that the best medicine available just isn’t going to do the job. I’ve written a few times on my own blog about Burzynski, some of those posts have been linked or mentioned by commenters, but you can find them all here (http://www.zenbuffy.com/tag/burzynski/ ) if you’re interested – fair warning, some of them are pretty long!.

    I’m grateful to Broadsheet for publishing the piece, as there seems to be a genuine reluctance in the media to be even carefully critical of Burzynski’s treatment.

    1. Zigfield Benzene

      Massive Kudos, Jennifer. The more awareness there is of these quacks who prey on the most vulnerable the better. Kudos Broadsheet too. Amongst the “stuff that looks like Ireland” fluff there is some backbone. Well done all concerned.

  9. ken m

    Last year RTE news did a piece on money been raised to send a a Dundalk child with severe congenital problems to a “miracle cure” stem cell clinic in china. Knowing a bit about stem cell research i immediately say it was a scam. I made a complaint to RTE only to get a reply from the reporter basically saying how dare i complain and how heartless i was to try and prevent this family getting this cure.

Comments are closed.