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TV DOCUMENTARY ON BBC 1 SCOTLAND TONIGHT 16TH JAN at 10.35pm channel 951 (sky)

For all who are interested.
At the conference in Glasgow three members of this group took part in a documentary about the cost of drugs.
This is being televised tonight on BBC1 scotland at 10.35 pm
This is channel 951 on sky and called
"Life death and enormous cost of drugs"
And is about the pricing of drugs and for how long the NHS will be able to sustain these cost's
Potentially this may affect us all.

You can watch this documentary for one week.... here
http://www.bbc.co.uk/iplayer/episode/b01pwh0v/BBC_Scotland_Investigates_...

I would like to thank all three of you for your excellent performances during your interview with BBC Scotland. Well done.
I would also like to express my utter disgust that the annual cost of your treatments appeared above your heads during your interview. This was a cynical and cheap stunt by journalists, who are paid by a public body (BBC), in order to substantiate their already very weak argument- that UK citizens diagnosed with rare diseases/cancers, both hereditary and acquired- when successfully treated with drugs/therapies specifically developed by the pharmaceutical industry to target rare diseases/cancers, represent a drain on the NHS.

I can only apologise to all three of you for asking you to take part in this documentary during the Glasgow meeting.
I will be sharing my feelings with the Director/Producer and the presenter of this documentary.

Sandy

Hi Sandy.
I agree with what you say and am annoyed in the way that the BBC portrayed us.
I found the documentary very biased and did not reflect fully on the interviews we gave or the issues in procurement of the drugs across the NHS.
i also feel very sorry for the lady who need the drug costing £250000 per treatment.
Potentially this could cause resentment in the community especially if somebody is refused a drug on the grounds of cost alone..
If possible do you have the contact details for producer of the documentary so i can write a letter of complaint.
Many thanks

Stuart.

What i felt was a real shame was the fact they did not mention Glivec comes off Patent in a couple of years and so will fall by some +80% in all likely hood. Drugs companies need to recover their R+D as was said, and are there to make a profit, NICE like them or not are there to ensure the NHS gets a good a deal, which they seem to. Also that the drugs bill accounts I gather for less than 10% of the total NHS spend as Stuart mentioned. Should we and other illness’s not be treated then patients would drain the NHS with care costs / transplant costs etc. On this basis should people not get any treatment for anything as everything will cost ?

As with all programmes / media, things are edited the way the show wants its audience to view their point of view / direction. The same view is not portrayed for drugs / drink / food addition, something that the patient for these could have done something about, we have an illness / diseases, though no fault of our own, thus deserve, as we do get the help and support of the NHS. We are a society that thankfully has a system in place to support illness or misfortune, and I for one am delighted.

As i said on screen given the diagnosis would we all, and the viewer at home hope and expect support.

Hi Stuart, yes I do have her contact..... she works directly for BBC Scotland rather than as an independent producer!
I will send it to your private email address.

I too will write a letter- I want to take some time to make the argument against this viewpoint but that will take a day or so! This kind of argument does not stand up to scrutiny.
Maybe I will publish it here and get some signatures in support it?

I do think an individual letter of complaint from you is a good idea.

Best.. Sandy

I absolutely agree with all you have said. I believe so strongly in the value of the NHS- which was/is based on social solidarity... something for which Britain should be admired.
I am distressed that high drug costs for rare conditions/diseases are being used as a reason for the wholesale cut in NHS services that we are about to see- come April this year.

I need to take some time to write a reasoned argument against the one this documentary is based on.

Hopefully I can put one together that might not have all the answers but at least allows for a rational debate.

best.. Sandy