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CMLS Group Response to: BBC Scotland Investigates 2013: Life Death and Enormous Amounts of Money

http://www.bbc.co.uk/iplayer/episode/b01pwh0v/BBC_Scotland_Investigates_...

CMLSgroup Response

18th January 2013.

It is always depressing to witness a publicly funded body resorting to tired formulae to gain an audience.
In the case of the BBC Scotland ‘investigation’, ’Life Death and Enormous Amounts of Money’ broadcast on January 16th, it was distressing to discover that this now extends to donning the role of bounty hunter.

The image of three cancer patients explaining how they have benefitted from treatment with imatinib/Glivec (one of the ‘expensive drugs’ in question) with the annual cost of their treatment displayed above their heads was disgraceful, disrespectful and sickening.
Presumably this was an invitation for viewers to assess the worth of such patient’s lives, before vilifying them for wanting continued access to the drugs that keep them not only alive, but fit and well enough to live, work and enjoy family life.

Since the BBC's only shareholders are its subscribing public, there is an expectation that its output exhibit a balance that perhaps might be absent elsewhere. Commercial companies have to maximize audience share to secure revenue streams and profits that will satisfy their shareholders.

We expected at the very least a programme that asked the difficult questions that people often avoid addressing. Questions that would have fulfilled the challenging and responsible role that is the privilege we grant to the BBC as a public broadcaster.

An example would have been a presentation of arguments both for and against private capital involvement in the drug development process, with an example of an alternative model.
What we got was a rote repetition of the standard ‘big bad pharma with ‘an insatiable thirst for profit’ meets ‘patients making outrageous demands’, which now seems to be the common currency in discussions of this type.

In this case we witnessed a series of cheap shots, glaring omissions, obvious inconsistencies and a total disregard for the patients interviewed, who in good faith, and buoyed by previous reassurance offered by the makers, agreed to be interviewed.
The pious declaration by the producer that she had the best interests of patients at heart, whilst allowing footage that attached price tags to the lives of individual patients was sickening.

On behalf of rare disease/cancer patients, we demand an apology, and expect the BBC to reprimand the makers of this biased 'investigation'.

David Ryner
Chair, CML Support Group.
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On behalf of CMLSg and its members, I have complained to the BBC using an edited version (only 1500 characters allowed) of the above statement. Their online complaints form is available here:
https://ssl.bbc.co.uk/complaints/forms/?reset=#anchor

*Under 'which service you wish to complain about' I opted for General TV as I could not find a option for BBC Scotland)
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I am waiting to hear from Rare Disease UK, who were the initial organisation that the BBC contacted requesting help in reaching rare disease/cancer organisations/patients, about whether they have any plans to respond to this documentary on behalf of their members (of which we are one.)
They have acknowledged my request and are due to discuss their next steps on Monday.

Of course orphan drugs for rare (orphan) diseases were the main target of this documentary- hence their use of the 250,000 price tag. Such therapies are usually for inherited conditions with very small populations and are currently put through an appraisal process by AGNSS (this work will be taken over by NICE in April this year).

Sandy

I have submitted a formal complaint, saying that I felt as if I were up for sale in a market. There was a distinct lack of respect shown to the three of us whose treatment costs were shown above our heads during the interviews.

I have also written my own complaint, having watched the program on Iplayer. The report was biased, unbalanced and very poorly put together.

Rod

See below for the response from the BBC re: CMLSGROUP complaint. As you might expect it is a pretty weak attempt on his part to support the basic message of the programme and in my opinion he could have done much better. There is a half hearted attempt at a sort of apology to the three CML patients who appeared with price tags above their heads- but not sufficient in my opinion. However, as a patient group that represents a rare disease we are not going to get very far unless larger 'umbrella patient organisations' take a stand too.
However, that does not look likely so.... I will make another response pointing out to him that the arguments the film put forward were badly researched and did not reflect the situation in the UK which- unlike the US- has a regulatory system in place which assesses cost effectiveness of the drugs/treatments in question.

Sandy

Reference CAS-1878210-M0R4Y7

Dear Ms Craine,

Thank you for the feedback regarding the BBC Scotland Investigates programme "Life, Drugs & Enormous Amounts of Money".

It was definitely not the programme makers’ intention to offend anyone who is ill and is the recipient of orphan drugs.

The interview you mention took place at the CML Conference in Glasgow in November 2012. In the interview three people from your support group gave their views on being treated with Glivec, which they described as having a transformative effect on their lives. The programme makers believed this to be an uplifting interview, describing the transformative effect of these drugs.

The programme also included an interview with a scientist, Dr Druker, who helped create this drug. The interview included his pride at creating such a drug and the impact it has had on patients worldwide. He has written of his, and other doctors’ discomfort at the price of these drugs. In the programme he spoke of how the drug was priced according to how much the market would bear.

The programme was examining how orphan drugs are currently priced and whether the pharmaceutical companies who develop these drugs are pricing them fairly. The programme was also asking whether the EU and American legislation designed to incentivise pharmaceutical companies to develop these drugs was causing any of them to be "over-priced".

The price of drugs is of public concern and due to the price of some orphan drugs some very ill people in Scotland do not qualify for their treatment. This is of such concern that the Scottish Government just days before our broadcast created a new fund specifically to pay for drugs for rare diseases.

At a time when the NHS is having to make real term cuts examining where the NHS might be over paying for essential treatment or examining where drug companies may be over charging for essential treatment we believe is of legitimate public interest.

We did not want to give the impression that the treatment that people featured in our programme was not essential and important and I do not believe the programme did give that impression. We did however want to highlight how much the NHS is paying for this essential treatment.

We are sorry if you felt some of the ways we illustrated the price for these essential treatments was offensive in anyway. Television is a visual medium and sometimes we have to get information across in a quick and accessible way. How we do this is a question of editorial judgement there are rarely right and wrong answers as to how this is done. However our editorial judgement is informed by viewer feedback and the point you make as to the price tags over patients' heads will definitely inform how we film and edit these programmes in the future.

Thank you once again for taking the time to give us feedback on the programme.

Details of the BBC complaints process are available online at http://www.bbc.co.uk/complaints/handle.shtml

Yours sincerely,

Marcus Ryder
Executive Producer

www.bbc.co.uk/complaints

NB This is sent from an outgoing account only which is not monitored. You cannot reply to this email address but if necessary please contact us via our webform quoting any case number we provided.

Dear ,
Thank you very much for the feedback regarding the BBC Scotland Investigates programme "Life, Drugs & Enormous Amounts of Money".

It was definitely not the programme makers’ intention to offend anyone who is ill and is the recipient of orphan drugs.

The graphic you mention appeared above the heads of three interviewees living with CML. This interview was included in the context that the drug Glivec had transformed their condition from one which was a “death sentence” to one where they could expect to live a normal life span.

The issue of price was discussed within the interview, as this drug costs around twenty thousand pounds per patient per year.

It was absolutely not the programme makers’ intention to cause offense by inserting a graphic to introduce this fact.

The programme makers believed this interview was an uplifting example of the effectiveness of this drug, and that it showed the transformation it had had on these peoples’ lives. In the interview, Stewart said that it was a “second chance at life” and Nigel said cost “whilst it’s a very big factor, has to be looked at the life that it’s giving to us”.

The programme was examining how orphan drugs are currently priced and whether the pharmaceutical companies who develop these drugs are pricing them fairly. The programme was also asking whether the EU and American legislation designed to incentivise pharmaceutical companies to develop these drugs was causing any of them to be "over-priced".

We would absolutely refute the accusation that the presentation of the programme was biased. We examined two orphan drugs described as “remarkable” and a “miracle” and we looked at the transformative effect of these drugs on patients. The programme also included interviews with GlaxoSmithKline and the industry via the ABPI (Association of British Pharmaceutical Industries) about how these drugs are priced.

The price of drugs is of public concern and due to the price of some orphan drugs some very ill people in Scotland do not qualify for their treatment. This is of such concern that the Scottish Government just days before our broadcast created a new fund specifically to pay for drugs for rare diseases.

At a time when the NHS is having to make real term cuts examining where the NHS might be over paying for essential treatment or examining where drug companies may be over charging for essential treatment we believe is of legitimate public interest.

We did not want to give the impression that the treatment that people featured in our programme was not essential and important and I do not believe the programme did give that impression. We did however want to highlight how much the NHS is paying for this essential treatment.

We are sorry if you felt some of the ways we illustrated the price for these essential treatments was offensive in anyway. Television is a visual medium and sometimes we have to get information across in a quick and accessible way. How we do this is a question of editorial judgement there are rarely right and wrong answers as to how this is done. However our editorial judgement is informed by viewer feedback and the point you make as to the price tags over patients' heads will definitely inform how we film and edit these programmes in the future.

Thank you once again for taking the time to give us feedback on the programme.

Details of the BBC complaints process are available online at http://www.bbc.co.uk/complaints/handle.shtml
Yours sincerely,
Marcus Ryder
Executive Producer

Hi Rod,
thanks for sharing your response the content of which is more or less the same as we all received I think, and entirely predictable. However, I believe that it was worth complaining and I would like to thank all of you who took the time.

The response is rather defensive which in a way is a good thing as it shows the weakness of the programmes basic premise. We can of course make use of this should we need to in the future. I think we are going to see much more of these kind of attacks (read Ben Goldacre 'Bad Pharma') as we see more and more cuts taking hold. It is easy to focus on the NHS drugs bill as being a 'cost too far', and I personally have had to endure such a 'lecture' by the Director of a PCT who sits on the NICE appraisal committee (C). I was told in no uncertain terms during the MTA for nilotinib and dasatinib that 'it is all very well for you people(?) to demand expensive drugs like these, but we (PCTs) have to think of 'everyone' not just cancer patients'...!!!
Of course people like this can never back up this claim by providing us with the exact costs of all NHS services. If they did we might then be able to compare them in a rational manner and thus make rational decisions.

Sandy