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Life, Drugs and Enormous Amounts of Money- BBC Scotland

I understand that on 16 January at 10.35pm BBC One Scotland will feature a documentary called, " Life, Drugs and Enormous Amounts of Money. "

Some of us were interviewed during the UK National CML Patient day in Glasgow. I have been told that they will not include their interview with me-something about there being a lot of info to include so they had to cut my interview. I am quite relieved to be honest- and maybe I did not say the 'right things' ;o) but I do hope they will include the interviews they did with Olivia, Nigel and Stuart.
I must say that I am not at all sure exactly what the 'message' of this documentary will be, but judging by the title I am a little concerned that it will give a negative message re: innovation and costly targeted therapies - drug companies making 'too much' profit etc.... which is a mantra that is rather fashionable in these days of cutbacks and NHS reforms etc. I hope I am wrong!

Sandy

Sandy,

Thanks. I found the following summary on BBC's website:

"Duration: 30 minutes

With the NHS facing deep cuts across the board, just how much should we be spending on medicines to treat a few rare diseases? Kenneth Macdonald investigates the drugs industry where lifesaving medicines can cost as much as a quarter-of-a-million pounds per patient, per year. Are the pharmaceutical companies pricing their drugs fairly? And how much longer can the NHS afford to pay these prices?"

Thanks for the summary which seems to confirm my fears that this documentary will argue that 'high' cost therapies for "a few rare diseases" are not worth paying for.

Judging by the example cost quoted -up to "a quarter of a million pounds per patient" - I would point out that this kind of figure reflects costs for drugs developed for rare inherited diseases - ie. orphan drugs to treat children- very very rare and thus not using a high proportion of the overall NHS budget.

Appraisals of such orphan treatments are currently dealt with by AGNSS - an Advisory Group For National Specialised Services- soon to be taken over by NICE- in April this year.

AGNSS was set up to advise the Secretary of State for Health on which specialised services and technologies should or should not be commissioned nationally.

'... a 2011 review of NICE appraisals by the Office of Health Economics (OHE) shows that only five orphan drugs of the 74 approved by the EMA were assessed by the middle of the year, with three of these not recommended for use.
The Scottish Medicines Consortium (SMC) in sharp contrast assessed 55 of these drugs.
NICE’s minimal assessment is likely due to fact that its methodology may result in a negative recommendation for an orphan drug, thus leading to a severe public backlash.'

See.....
http://healthcare.blogs.ihs.com/2012/02/06/agnss-is-there-really-a-need-...

I can only guess at why BBC Scotland have commissioned a documentary like this at this time!
I have asked for reassurance from the makers that they are not sending the message that we- as a society- cannot afford to treat patients with rare diseases due to the cost of any particular drug - and the money could/should be diverted elsewhere?
Presumably- if this is their argument- they would advise that parents and families of children born with very rare inherited conditions should do what- pay privately/accept that their child's life is going to be short?

I understand that they have included CML as an example-maybe because the therapy is so successful- and therefore the population of CML patients is increasing year on year and represents a high cost to NHS?
I assume this is why they flew over to Portland OR, to interview Brian Druker! (tax payers paying for the fight/hotel costs?)

Sandy

It is no surprise that cost is being talked about with regard to CML drugs, and the twist of linking orphan drugs to CML drugs. As a matter of interest I looked up the costs of methadone and found the following headline in the Daily Record 28/2/2012- a scottish newspaper :Total cost of prescribing methadone in Scotland surpassed £28m in 2011: Whilst I would never say this is not an acceptable drug cost I do think we, as cancer patients, need to bear in mind that our costs and lives are just as valuable and the drug bill argument should not be about individual needs, rather about pharma company profits!
OK rant over !!!!
Pennie

Just to remind you that BBC Scotland will broaddcast this documentary at 10.35pm tonight.
Please update here if you are able to watch tonight. I believe it will be available to watch on BBC catchup from tomorrow.

Sandy

fingers crossed its positive, worring they have left you out though Sandy

Nigel

I did watch the programme last night (and appeared very briefly - my TV debut - and final appearance!!). I came away feeling rather angry and worried. OK, so the drug companies do make lots of money, but they do save lives. Perhaps they could be induced to charge rather less for the drugs - thats' not for me to say. There was no mention of the fact that imatinib will be out of patent in the next few years - how will that affect the cost?
There was no consideration of the vast amounts of money that the NHS spends on other treatments - gastric bands, replacement of faulty breast implants, methadone (thanks Pennie), patching up fighting drunks... I could go on.
And what about the waste of money paid to the Director General of the BBC, who lasted only a few months and left with a huge pension?

Thanks Olivia for the update. It seems my fear that their argument would be both biased and overly simplistic was justified! The questions I was asked during their interview with me at Glasgow Seminar made me quite worried and suspicious. I will watch this on BBC iPlayer tonight. I believe it is available on there for one week.

Best.. Sandy

I have just watched the video and like others I agree-it was an absolute farce!
If the NHS were to manage their money there would be no need to try and use CML patients as scapegoats! When I swapped from imatinib to nilotinib I tried to return 3 months worth of drugs (unopened etc) to my GP,2 local pharmacies and 2 hospitals only to be told they go in the bin- thats the policy!!! So maybe the producers could make a programme about that too!!The NHS could then save this money ,using it to help patients having their heart ops etc ,after all their lives appear to be of more value than us CML patients.