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| TX: 23.01.06 - Dementia Drugs PRESENTER: WINIFRED ROBINSON |
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| Downloaded from www.bbc.co.uk/radio4 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: 23.01.06 - Dementia Drugs PRESENTER: WINIFRED ROBINSON ROBINSON As you may have heard in the news NICE - the National Institute for Health and Clinical Excellence - has revised its guidelines on the drugs which can delay the progress of dementia for a short time in some patients. Rather than denying them to all new NHS patients it now wants to limit the availability of the drugs to those who have moderate Alzheimer's Disease. Almost a year ago there was uproar when NICE proposed that the drugs should be withdrawn from prescription on the NHS because they were not cost effective. The future availability of the drugs was a big worry for many of the people who spoke to You and Yours during our month of reports about dementia in November. There'll now be a three week long public consultation, then a further review and the final decision expected in July. This was Andrew Dillon the Chief Executive of NICE speaking on the Today programme this morning. TODAY CLIP DILLON We were told that these drugs worked for some patients but not for others. And we were encouraged to look to see if we could identify that particular group of patients. And at the latter half of last year we went back to the drug manufacturers and we asked them to look again at their clinical trials. And the evidence that we've now got suggests that patients benefit from these drugs in the moderate stage of the disease most of all and it seems to us to make sense that when we're making a recommendation on when drugs should be used for a condition that inevitably deteriorates, these drugs don't stop patients from deteriorating through the condition, that we should make sure they're used when they really do have the maximum effect. What's interesting about the evidence suggests that many patients are getting a benefit when they receive a placebo, so they're not actually getting the benefit from the drug itself, and it's actually rather uncertain in the early stages of the condition where the effect is coming from. STOURTON Well uncertain is the key word isn't it, you're not saying that you know that it's not effective in the early stages are you? DILLON We're saying that it's most effective when patients are actually in the moderate stage of the disease. ROBINSON Andrew Dillon, the Chief Executive of NICE, talking to Ed Stourton. Well patients and doctors are already questioning the wisdom of allowing any disease to progress before trying the drugs that might halt it for a time. Sue Whitcombe's husband David, who is 62 and has Alzheimer's, has been taking one of the drugs - Reminyl - for three years. Keith Turner is 67 and he's been on another one - Aricept - for 13 months. They both took part in our discussions about dementia in November and they gave us their reaction to this morning's news a little earlier. TURNER I was given Aricept right at the very early stages and this was essential because it came in just at the right time for me to be able to get the benefits to take up my life again. I would not personally have qualified for Aricept under this new set up. When I first started to be diagnosed with Alzheimer's I was unable to go out by myself, I was getting so frustrated because I would easily get lost. We got to the stage where I was unable to read and remember what I'd read and life was in fact not very meaningful. But I have had such wonderful benefits from this Aricept that I now go out by myself, I am able to drive a car, I am able to read, I am able to take the pressure off of my wife, who is my carer. SUE WHITCOMBE David went on to Reminyl in the early stages because he was diagnosed quite early on and it's made a significant improvement, not only to his scoring on the mini-mental test, but to being able to continue to live positively in a way. It's given him an extra three or four years at least, so I think there's a lot of value to be had from prescribing the tablets early on in the illness, especially for people with dementia under the age of 65, it's extremely important because they often have families to contend with. And also for the people in the later stages, to give them a little bit of dignity. So it's the only tablets available for the illness. He was very confused, very slow in his thoughts and how he did things, very slow to understand and very apathetic and closed in on himself. Once he started on Reminyl his whole attitude changed, he became more lively, took more interest and seemed to have an interest in life again. So I think there's a great value in prescribing them as early as possible to allow people to continue living as such. TURNER If they were to deny and continue to deny this access to the early stage Alzheimer's Disease then unfortunately it's going to put a greater burden on the carers. These people will rapidly decline in what they can do and they would then go into a state where I feel they would be losing out on a life. Two pounds 50 per day is nothing to what it brings back into the life of a person with dementia, with Alzheimer's. ROBINSON Keith Turner and Sue Whitcombe. Dr David Wilkinson is consultant old age psychiatrist at Moorgreen Hospital in Southampton and he's a member of the group Action on Alzheimer's Drugs Alliance, which represents more than 30 charities and professional organisations. Before we go on to discuss the NICE decision would you tell us how these drugs work and who they work for. WILKINSON Yes, well they work by preventing the breakdown of essential chemicals in the brain which are lost in patients with Alzheimer's Disease and which leads to a stabilisation or improvement in about 60% of patients with Alzheimer's. ROBINSON Now the job of NICE is to do the cost benefit analysis, how much do these drugs cost, we heard there £2.50 a day, how would that compare with other drugs that people might take for other incurable conditions? WILKINSON Oh it's a very modest cost compared with drugs for - some of the drugs for epilepsy or Parkinson's or cancer - it's about £80 or £90 a month. And we would expect people to be on the drugs for maybe around 18 months to two years. ROBINSON What do you make then of this latest decision? WILKINSON Well I welcome the fact that they've gone back on their decision, so they are supporting the drugs as originally approved. But limiting the use to moderate dementia lacks any common sense really and will create a lot of distress in the public and mean that some people will be seeking to get the drugs privately and others of course can't afford it. ROBINSON Well you say it lacks common sense but we heard Andrew Dillon there saying that this was the advice that he had from the drugs companies - they asked them to go back, look again at their data and they've come back with the fact that those who benefit most are those at the - not in the first stages of Alzheimer's, in a moderate stage. WILKINSON Well you know that's again rather unintelligent because essentially what they've asked us to do or what they've asked the drug companies to do was to look at where patients' scores were and of course if you don't score very badly on a test you can't improve a lot. And that's one of the difficulties ... ROBINSON Sorry, you've lost me there - if you don't score badly you can't improve a lot? WILKINSON Well if you score very highly on the test, in other words you're mildly affected, there isn't much room for you to improve, so you can get bigger improvements in the score when you're more moderately severely impaired. But that doesn't mean that people with mild disease don't get benefits from the drug, that's what - that's the difference. I mean when we're looking purely at numbers then clearly the more moderately severe patients can show greater improvements on the numbers but not necessarily in the disease overall. ROBINSON Now if this does turn out to be the new guidance how will doctors like yourself distinguish between what is mild and moderate dementia, is it simply with those memory tests that we heard about in our series? WILKINSON We're being asked to ration the drugs, if you like, to those who score between 2 scores on this particular mental test. ROBINSON So it's as precise as that? WILKINSON It is indeed and we'll be audited on that, they've given us an audit to what we have to use. But of course dementia is far more than just memory loss and cognitive damage, it's about changes in personality, changes in behaviour, changes in function which are just not reflected totally in that score. ROBINSON We should say that the patients who already receive these drugs on the NHS will continue to do so but one of the drugs that's used for more severe dementia won't be available on the NHS, for the time being anyway, because clinical trials are still underway. What do you think of that decision? WILKINSON Well that really has a strange twist to it because they're actually asking us to only limit the treatment to moderately severe dementia and the only drug which is actually licensed for moderately severe dementia is this very one they've decided not to support. And the evidence that was submitted to NICE demonstrates that this drug has equal efficacy to the other compounds in more severe patients. ROBINSON You've been part of a big and successful campaign to bring this whole subject to national attention. Where do you go from here? WILKINSON Well the Faculty of Old Age Psychiatrists and the Royal College of Psychiatrists will be sending in a response to NICE, as will the other members of the Action on Alzheimer's Disease Drug Alliance and we'll be asking NICE just to look at the consequences of this revision of their decision and see whether they will not think again. ROBINSON Dr David Wilkinson, thank you. 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