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THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.


TX: 08.01.07 - Alzheimer's Society Judicial Review

PRESENTER: LIZ BARLCAY


BARCLAY
The controversial decision by NICE, the National Institute for Health and Clinical Excellence, to refuse people in the early and late stages of Alzheimer's Disease access to drug treatments, came into force last November. Now for the first time NICE will be challenged in court over a decision by the Alzheimer's Society as part of a judicial review lodged at the High Court by two of the drug's manufacturers - Pfizer and Eisai. The society's legal team will be championing the rights of people with dementia and their carers. And the chief executive Neil Hunt is with us. Neil, what are you doing exactly?

HUNT
We are challenging NICE's final decision on this matter in the High Court. We're convinced that they're wrong, we're convinced that the way they've approached this is wrong. And backed by the energetic support of our members we want to test this legally.

BARCLAY
So you're lodging papers at the moment but you've already appealed against this decision and NICE has looked and looked at this again, it has said that its decision is correct.

HUNT
Firstly, the thing to say is that actually after the first initial thoughts on this they actually moved their ground very, very significantly. And in November they produced two bits of guidance which seem to contradict and the fuller which we think has got lots of good stuff in it actually is very, very enthusiastic about early diagnosis, early treatment, bringing everything in. It's this particular perverse, we think, decision on not giving people these drugs in the early stages that we're very concerned about.

BARCLAY
So why do you think it's perverse?

HUNT
We think it's perverse. One they seemed to have singularly failed to address the pressures on carers, which actually would have saved people - these drugs we reckon could save carers about an hour and a half a day on average, that is very significantly more than the £2.50 that NICE are claiming to save. Secondly, their reliance on one simple test we think has lots of discriminatory aspects to it, depending on your level of understanding of English, use of English, your educational background and so forth your scores are going to be quite different and yet they are saying those scores will determine whether you apply for them or not. And thirdly, we've actually got concerns that they haven't really understood the economics of the long term care packages that they're describing, they've seriously underestimated those costs. So three very important grounds. And why we're saying go to court is yes they have an appeal process but it is their own internal, there is no independent scrutiny of these decisions. And I want to be very clear - we support the existence of a body like NICE, we think it is very important that there is a body like this but actually we're really seriously saying we believe they are wrong in this case and this decision needs to be subject to scrutiny.

BARCLAY
Okay, but NICE isn't happy about this decision to apply for the judicial review, its chief executive has told us he's disappointed, he considers the claim to be without foundation and says that it will require NICE to divert energy and funding from the work they do supporting patients and health professionals to get the most out of the resources available to the NHS.

HUNT
My trustees had to think of similar issues actually for the organisation - we're not primarily in business to take legal actions, people give us money to help with our campaigning and the care services we provide. We were absolutely clear however, that on the basis of everything we understand about this issue and the mood of our membership we had no choice but to take this action. We're disappointed that we've got drawn into I think really a bit of a sideline in a way - these drugs are important but they're far from the whole piece about caring for somebody with a diagnosis of Alzheimer's Disease, there are very important issues about how care is provided, how staff are trained and supported and so forth. We'd really much prefer to be having those discussions but drugs are a crucial aspect of this and we didn't feel we could let this lie.

BARCLAY
Thank you very much indeed. Well Andrew Dillon says that its consultation, decision making and appeals processes are transparent and fair and we'll find out in about three weeks time whether or not you've won the right to review. Neil Hunt thank you for joining us.



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