My complaint to ITV regarding Dr Hilary Jones and the Burzynski Clinic

UPDATE 27/01/12) ITV Viewer Services replied today (details here).

UPDATE (25/01/12) ITV Viewer Services replied on 28th December to say that the email below has been passed to the Daybreak production team for a response. There has been no further response so I have just sent the following to ITV Viewer Services and the Daybreak team:

I’m concerned that I have still had no response from the Daybreak team to my email of 23rd December (copied below).
I find it very worrying that Dr Hilary Jones presented this highly dubious clinic in such a favourable light, even brushing off the well known legal problems by stating that ‘pioneers in medicine tend to get a rough ride to begin with’. This was appalling and deserves attention.
Since my last email, it has come to light that a former patient of the clinic is seeking damages from Dr Burzynski (and his companies) for negligence, negligent misrepresentation, fraud, deceptive trade and conspiracy. She says that the defendants failed to disclose that her treatment was part of a clinical trial and charged her $500 per pill for drugs she could buy elsewhere for a fraction of that price.
I think it important that you address my concerns.

__________________________________________________

As has already been discussed here and here, Wednesday’s Daybreak show on ITV featured five-year-old cancer sufferer, Chiane Cloete and her father. They appeared on the show alongside in-house doctor Hilary Jones, to discuss Chiane’s proposed treatment at the Burzynski Clinic and her fundraising campaign.

While it was clear that ITV had done some background research and were aware of some of the controversy, I was shocked by the feature and emailed viewerservices@itv.com with the following:

Dear Sir/Madam,

I write to express concern about recent coverage of the Burzynski Clinic and Chiane Cloete’s fundraising campaign (Daybreak, 21/12/11).

I don’t wish to criticise Chiane’s family in any way – who I understand are in a very desperate situation and have my full sympathy. However, while I understand that the Daybreak piece was in support of her campaign, I found it distasteful, shocking and unnecessary that Chiane herself – a very poorly five-year-old girl, had to sit and listen to such a discussion about her predicament – which under the circumstances was never going to be open and objective.

I also found the comments by Dr Hilary Jones to be highly misleading, irresponsible and misinformed.

As a blogger who has been keeping track of the main issues regarding the clinic and keeping up to date with developments, I am well aware of the various legal and ethical issues surrounding the clinic, some of them very serious. For some considerable time, I have been dismayed and frustrated that the British media have so far failed to report these adequately. I was therefore impressed that the Daybreak feature opened with the presenters pointing out that Burzynski’s treatment is controversial, that it is not recognised by the US authorities and that Burzynski has been tried with fraud.

I am also well aware that the Burzynski Clinic have been carrying out clinical trials for over thirty years, without ever publishing data in a peer-reviewed scientific journal. I was therefore outraged to hear Dr Hilary Jones describe the treatment as ‘experimental’ and ‘pioneering research’, even explaining away Burzynski’s various brushes with the law by stating that ‘pioneers in medicine tend to get a rough ride to begin with’. As a Health Editor on the show and a qualified doctor, it is his duty to be properly informed and to be balanced and objective. Viewers are likely to trust his judgement. Because of his either ill-informed or ill-judged remarks, I believe that overall, the feature was presenting this highly controversial clinic in a very favourable light.

In general, I have strong concerns about misleading promotional health stories, which I believe appear in the media all too often. I usually conclude emails like this by saying that health or science pieces should be overseen by someone with a specialism in that area. Paradoxically in this case, it was the Health Editor himself who was at fault.

I would welcome your comments on any of these issues.

Best regards,

Josephine Jones

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24 responses to “My complaint to ITV regarding Dr Hilary Jones and the Burzynski Clinic

  1. I am super confused. How are you NOT criticizing this family? Also, why are you unable to read for yourself any of the peer-reviewed literature. Why are you unable to realize that clinical trials are CLOSED and have been since 2009. All new patients are allowed in on an individual basis by the FDA. Permission for randomized Phase 3 trials have been granter by the FDA.

    “Misleading promotion?” What is it that you are doing? You are so mislead you don’t even know which direction you are going. You haven’t the slightest idea of anything about Burzynski, the FDA, the therapy, nothing. Please move on to your next abomination. Leave this issue alone.

    Let me guess, you got your info from “Quackwatch?” – [edited to remove potentially libellous material]

    Wake up, grow up. This therapy is legit, and it has been curing people for 30 years. Not everyone, no one said anything about it being a magic bullet. But it is indeed a non-toxic treatment proven by the USA’s Food & Drug Administration to CURE CANCER. If it did not the FDA would not have granted Phase 3 randomized trials.

    Why is it that you blindly waste your time with this issue? Perhaps try “the flat earth society” they need some members – and that is of course if you choose to debate a non-issue.

    • Hi Norman, thanks for taking the time to comment on my blog. I will try to answer all your questions as fully as I can.

      How are you NOT criticizing this family?

      I am not criticising any of Burzynski’s patients. I understand that they are in an unimaginably vulnerable and desperate situation. They will try anything if they think there is even the tiniest chance it will be helpful, especially if they have been misled by the clinic and the media. I am not in a position to judge them. As I have said time and time again, my problem is with the clinic itself and the media who promote them, naively or otherwise. I am surprised you think I am criticising the family as I have made every effort to stress that I am not doing that.

      Also, why are you unable to read for yourself any of the peer-reviewed literature.

      Because it doesn’t exist.

      Why are you unable to realize that clinical trials are CLOSED and have been since 2009

      Clinical trials are still ongoing. The Burzynski Clinic’s own website states “Antineoplaston treatment is an experimental therapy offered by the Burzynski Clinic, currently available only within clinical trials.”

      This is because antineoplastons are not approved as a treatment by the FDA, unless as part of clinical trials. This has been the case for over thirty years. I don’t know why you think the trials have been closed since 2009. Where did you get this information? The Burzynski Clinic site states here that “Currently, there are 5 open clinical trials on Antineoplastons (as of January 2011)”.

      “Misleading promotion?” What is it that you are doing?

      Unfortunately, misleading and promotional articles relating to health and diet appear in the British media all too often. As this bothers me, I have made it my business to blog and to complain about them. Most cases of this seem to result from a company contacting a newspaper directly, who then go on to write a typically uncritical, badly informed and misleading article, often making claims and implications that would not be allowed in advertising. There is an example of this here.

      The recent media articles about Burzynski and his patients’ fundraising complaints are somewhat different, but are still effectively promoting the clinic. For further info on this, I suggest you read some of my other recent posts (linked on the right of this page).

      The Daybreak piece discussed above was the first such article to point out that the clinic is controversial and that Dr Burzysnki has been tried for fraud. Although the piece was not promoting the clinic as such, in my opinion, the effect of the comments by Dr Hilary Jones would have been such that the overall impression given to viewers was favourable.

      All the other recent British media articles regarding Burzynski patients’ fundraising campaigns have been wholly uncritical so I believe they are therefore indirectly promoting the clinic.

      Let me guess, you got your info from “Quackwatch?”

      When I initially wrote about Burzynski, I would say that Quackwatch was one of my main sources, as you can see here. However, the recent outrageous pseudo-legal threats directed at bloggers by Marc Stephens (who represented the clinic) had the effect of making the blogging scientific community much more aware of the clinic, and provoked over a hundred new posts in less than a week. I have listed my recent main sources here. I have unfortunately had to redact the rest of your comments about Quackwatch as I fear they are potentially libellous.

      Why is it that you blindly waste your time with this issue?

      Because I care. I’m not blind. I wouldn’t write about something without being informed. I don’t believe I am wasting my time.

      In response to some of your other points, even the Burzynski Clinic themselves don’t claim that it is non-toxic and that it has been curing people for 30 years. It has certainly not been proven by the FDA to cure cancer. I wish it had, and if it did, I would be promoting it myself. I am confused as to why the FDA have granted Phase 3 randomized trials and would be interested to read more on this. Do you have any more information, such as when these trials are going to begin?

  2. @Norman
    “Also, why are you unable to read for yourself any of the peer-reviewed literature.”
    This is an interesting reproach, given that you avoid presenting independent (i.e. not by the Burzynski clinic itself) evidence. On second thought, your whole rant is unsubstantiated. Please give us more of your evidence, so that we know, what you are talking about, and can start discussing facts instead of opinions. Maybe you can start here: “Controlled clinical trials are necessary to assess the value of this therapy.” (http://tinyurl.com/7288nv9)

  3. josephinejones you’re not wasting your time, this is a well written post and I hope your letter gets the response we’d all like to see.

  4. If the FDA have already proved that Burzynski can CURE CANCER, what’s the point of phase III trials?

    • I thought it was up to Burzynski to prove that, actually. And since Phase III trials are, among other things, intended to test efficacy, the point seems fairly obvious.

      Or were you being sarcastic?

      • Not so much sarcasm as a “genuine” question to Norman who wrote…

        “But it is indeed a non-toxic treatment proven by the USA’s Food & Drug Administration to CURE CANCER. If it did not the FDA would not have granted Phase 3 randomized trials.”
        ;)

  5. Pingback: ITV’s Daybreak describe Dr Hilary Jones’ comments on Burzynsk as ‘studiously neutral’ | Josephine Jones

  6. If you are really interested in facts, then this should interest you. These are the friends of Dr Jones who he referred to during the interview with Chiane and her father. In case you fail to watch it, I want to mention that the woman in question is now cured due to the Burzynski clinic.

    You really also should watch this movie, it contains the facts of the matter. The FDA have openly stated in court that they’re not interested in whether the treatment works or not. What does that tell you?
    http://topdocumentaryfilms.com/burzynski-the-movie-cancer-is-serious-business/
    This thing is about money. I am also a cancer patient in the UK and I know first hand that most people are unaware of the cancer act of 1939 which makes it illegal for any medical person to promote any other treatment or cure (of which there are many) other than radiotherapy and chemo.
    If nothing else, take a look at the opening lines of this act – its blatantly clear that this whole cancer issue is about money. No regard for the fact that chemotherapy has now actually been proven to CAUSE cancer! (you won’t believe me, so research it and prepare to be shocked)
    Another little shocker that everyone actually knows but most people fail to connect the dots about is RADIATION CAUSES CANCER! …….at this point, most thinking people should begin to question the whole ‘treatment’ issue………..Why do people think that if you give cancer patients carcinogens, it will suddenly CURE and not CAUSE cancer as it would in every other human being?
    http://www.legislation.gov.uk/ukpga/Geo6/2-3/13/introduction

    One note. I have cancer. I was diagnosed in 2009 and told that if I didnt have immediate treatment I would die. This is a tumour which was diagnosed as a cyst when I was 17. I am 46 now. Obviously my cancer is very slow growing, which is yet another reason why I refused treatment. Chemo targets fast growing cells. It would appear that the average cells in my body are likely faster growing than my tumour cells. Imagine what disastrous effects that would have on me?
    In case you’re wondering, I am having alternative treatments, all natural. I am healthier now than I was 3yrs ago when I was diagnosed. My tumour has also shrunk by much more than 50%, probably nearer to 75%. It began to get aggressive ONLY when I had the biopsies.

    People have no clue of the amount of non toxic, natural treatments available that are actually illegal. There will be no chance of most of them ever becoming legal due to the fact that drug companies WON’T pay for the drug trials needed to approve them. Why won’t they pay? Because natural products can’t be patented and so drug companies will never OWN the rights to them.

    Please do your research properly before starting a blog about something you know nothing about.
    I wish you well and pray with all my heart that you begin to research this properly before you put a loved ones life at risk.

  7. You might also not be aware that Dr Burzynski is mainly only allowed to treat those patients who have been through the medical system and nothing more can be done. Some of these people are VERY toxic due to the medical systems toxins (ie: chemo) and many have been given up on. The fact that he has a high success rate should say it all. He is curing ‘INCURABLE’ brain tumours by the definition of the medical system.
    People should be allowed a choice yet unfortunately, due to total ignorance, they usually aren’t.
    Do you know what its like to be a cancer patient and find that you have to buy all your treatments from countries like Equador who have different laws, and then find that the UK charges hundreds of pounds in customs fees?
    Even as far as the way doctors are trained is ridiculous. The reason they know nothing of alternative treatments is because the universities are sponsored by companies such as the Rockerfeller foundation who are the largest cancer business going. (yes, cancer is big business, one of the largest) Of course, the universities have to follow the guidelines on education laid down by their sponsors or the funds would stop.

    Such a shame that people don’t know this and so much more to know about the corruption in the cancer industry…….

  8. I am indeed interested in facts, not in ludicrous conspiracy theories. This sort of support is an embarrassment to the Burzynski Clinic.

    I could respond to your comments in detail…

    – Why it’s incorrect to say the the woman in question has been ‘cured';
    – What the Cancer Act is for and what it says (eg there is no mention of any specific treatment at all);
    – How new cancer treatments are developed;
    – How cancer quackery or (‘alternative’ cancer treatment) is dangerous and exploitative;
    – That the Burzynski Clinic uses chemotherapy, and lots of it, including ‘antineoplastons’ which are not natural or non toxic;
    – That I have researched this in some detail, taking great care to be factually accurate, as you could see if you took the trouble to look (eg here http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/);
    – You seriously believe the Rockefeller foundation are responsible for setting university course material?

    To be frank, I have better things to do with my time.

    • Sorry Josephine but if your source of info is Quackwatch run by a man who [edited to remove potentially libellous material] I feel you have been duped. http://www.quackpotwatch.org

      There is a girl at my kids school who has been to the Burzynski clinic and was told here by doctors that she would die, people raised money and now some considerable time after she was told by ‘proper doctors’ that it is over she is doing really well. Her tumour is turning into a cyst and regular doctors over here are agreeing to scan and feedback amazed by her progress and no doubt unable to discourse due to the religious mania in medical cancer circles. It is truly disturbing that there is absolutely no scientific enquiry and people are having to go round obstruction. This is going on all the time, Check out this guy who had to take a hospital to court to get intravenous vitamin C to save his life, this work has nobel peace prize research backing it Josephine but the Quackwatchers want to ban it! http://www.youtube.com/watch?v=vTXSTGGRvKY

      There is a lot of crap on cancer treatment out there but a lot of it is orthodox, sanctioned by the FDA. The quackwatches of this world however are making damn sure that reasoned scientific debate does not take place and as long as blogworld trys to dictate some influence it won’t get any better. Just watch the hysteria build over the next flu scam JJ, the next measles scam etc. all in the name of ‘proper doctors’.

      I notice none of your friends or grateful public are logging on, wonder why?None of the TV stations, publishers are either, wonder why?

      Septic blog world is slowly grinding into nothing, you are on the tale end of the Orac/Henness/Singh/ernst, even the Goldacre is waking up to pharmas so I suggest you quietly move on.

  9. I’d say that if the woman no longer has cancer as a result of the treatment she received from the Burzynski clinic, then she’s pretty much cured? She certainly would have been classed as cured if she’d received ‘conventional’ treatment.
    Shame you have other things to do with your time, proper research might save wasting other peoples.
    The opening paragraph of the cancer act of 1939 says exactly this –
    “An Act to make further provision for the treatment of cancer, to authorise the Minister of Health to lend money to the National Radium Trust, to prohibit certain advertisements relating to cancer, and for purposes connected with the matters aforesaid.”
    amazing how you think no specific treatments are mentioned? (What treatments are associated with the national radium trust…….ummm, let me think……..)(the clue is in the word radium?)
    I so hope that someone else reading this will take the time to research as you clearly haven’t.

  10. I do apologise for anyone who’s reading this and is confused by the very first video I posted. For some reason, the wrong video went on, This was the video that I thought I’d posted. This clearly shows someone cured by the Burzynski treatment AFTER receiving mainstream treatment.

  11. This is very strange, once again the wrong video has posted. For anyone who’s interested in truth, please go to you tube and search for the 40 minute documentary called “Hannah’s Anecdote”. I’m not sure why, but there seems to be a glitch when I try to post it here.

  12. I was a bit confused as to why you chose to post that particular video instead of ‘Hannah’s Anecdote’ or one of the videos from her blog. I had realised you were referring to Hannah, who is featured on there.

    Here’s a link for anyone who hasn’t seen it:

    Hannah’s anecdote is here: http://topdocumentaryfilms.com/hannahs-anecdote/

    With regard to the Cancer Act, I have to admit I had no idea that radium was mentioned in the introduction. My apologies. Of course nowadays, there is a vast range of cancer treatments. Cancer research has come a long way since 1939. But you still aren’t allowed to advertise any cancer treatment, including radiotherapy.

    I was referring to this bit:

    No person shall take any part in the publication of any advertisement—
    (a)containing an offer to treat any person for cancer, or to prescribe any remedy therefor, or to give any advice in connection with the treatment thereof;

    I agree that Hannah’s story does seem to be remarkable. However, this does not provide evidence that she is cured or that the treatment at the Burzynski clinic was responsible for this. It isn’t that simple. Also, no reputable doctor would say that a patient had been cured so soon; they would talk about remission. And it is too early to talk about that. Indeed I don’t think Hannah, Pete or Dr Burzynski have ever made any such statement, but I don’t deny that her recent results have looked promising.

    It’s very difficult for critics to comment on the scans without upsetting patients. Although they have put them into the public domain, it seems morally wrong to discuss them, particularly if we’re talking about individual patients and particular scans. For that reason, it is rare that you will find critics of the clinic questioning the scans (though this has happened) and I don’t wish to do so. By this, I don’t mean to imply that I don’t believe the tumours have shrunk. I just feel it’s none of my business to discuss individuals’ medical records without their consent.

    In any case (as I’ve said in a previous comment), testimonials from individuals aren’t reliable evidence that a treatment works (or that it is safe). We need to see results from good, large scale trials. And we haven’t. Despite over thirty five years of using ANPs with thousands of patients, and despite ANPs now only being available in trials, we have still not seen the publication of meaningful data.

    Supporters of the clinic keep mentioning the same, small number of promising personal stories and ignoring all those who have died. Indeed, websites such as the Burzynski Patient Group and Setting them Free continue to feature positive testimonials from patients even after they have died. This is utterly sickening.

    If you are genuinely interested and open minded, here is my post on patients, testimonials, the role of the media, and the patients the Burzynski Clinic wouldn’t want us to hear about;

    http://josephinejones.wordpress.com/2012/04/29/if-the-media-care-about-burzynskis-patients-they-must-pull-their-heads-out-of-the-sand/

    I have spent a lot of time learning about the Burzynski Clinic and it is unfair of you to imply that I haven’t, especially when you seem to know very little about it yourself. For example, you don’t seem to realise that Dr Burzynski is a conventional doctor or that ANPs are a type of chemotherapy. I might have time to read about the Burzynski Clinic and to write about my findings but I do not have much time to spend banging my head against the wall, arguing the same points over and over with people who are not prepared to listen.

  13. JJ, to save you having to regurgitate all this stuff *yet* again, perhaps you could have a FMP (Frequently Made Points) page to direct these dimwits to?

    Oh, and Michele, I think you forgot to accuse JJ of being paid by Big Pharma.

    • What a good idea. It could save me a lot of time.

      • I totally understand that people think that things are very straightforward, but really, you have no idea how things work unless either you, or someone you know (especially a child) has been in the system and opted for ‘alternative’ treatment after doing the research.
        If you do the research, you’ll find that parents of children in the UK, if they opt for alternative treatments, are taken to court and their parental rights taken away, even if the hospitals have clearly stated that their treatment will not work.
        I actually know parents who this has happened to, and their children have suffered greatly because of this ignorance.
        Dr Burzynski is helping many people who have been very badly damaged by the hospitals.
        Dr Burzynskis method has been patented. This was his protection. (he thought) However, it hasn’t stopped large companies from trying to steal his idea and put him out of business many times.
        I can’t stress this enough – it is about the money, not about our health!
        (if it was ever about health, the cancer causing ‘treatments’ wouldn’t be used)
        Please, before anyone makes a comment, take the time to watch the burzynski video here: http://topdocumentaryfilms.com/burzynski-the-movie-cancer-is-serious-business/
        You will see actual data and then finally realise why his treatment will never become mainstream.
        None of you will watch the movie, I know that in advance.
        I’m not going to accuse anyone of being paid by big pharma. It seems like they no longer have to pay people. (although it is documented that they do) The propaganda put out there by them ensures that trusting people do their work for free.
        All I can say is one day, when the penny finally drops and you do bother to do the research regarding the corruption, I hope you think back to this and remember that you helped it along.
        I’m sure you mean well, but there is so much more to all of this than meets the eye. I’m not into name calling, truth seeking is more my venture.

  14. Ok, you’re missing the point. That’s nothing new for many people. I hope you find the time to research WHY the fda want Burzynski shut down. People are very naive and don’t understand that cancer is a big business and some people will do anything for money.
    I wish you well.

  15. Pingback: Dr Hilary Jones, Golden Duck nominee | Josephine Jones

  16. Pingback: Science-Based Medicine » Now that Burzynski has gotten off in 2012, Burzynski The Movie will spawn a sequel in 2013

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