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| TX: 17.11.05 - Dementia: Cost of Drugs PRESENTER: JOHN WAITE |
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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. WAITE Now when it comes to dementia what singles out Albania from the rest of Europe? Well Albania is the only European country which doesn't prescribe anti-dementia drugs to people with Alzheimer's Disease. But, Albania may not be alone for long because many patients and health professionals in this country fear that Britain may be about to go the same way. The National Institute for Health and Clinical Excellence - NICE - is currently reviewing anti-dementia drugs which cost around £2.50 pence a day per patient. And early indications are that it may well withdraw the drugs on the grounds that they're not cost effective. Opponents say the cost is more than matched by reductions in the care required by patients whose condition is improved by the medication. Well our disability reporter Carolyn Atkinson has been to Hastings on the south coast where she met Keith and Lillian Turner, who say their lives are almost back to normal after 67-year-old Keith was prescribed the drug Aricept for his Alzheimer's Disease. KEITH TURNER Got time to listen to a little bit of music mother, shall we put a CD on for a while? Go down the rack there please. LILLIAN TURNER Which one? KEITH TURNER True Love. Go up - up - the red one. Ah yes. We started courting when we were 14. LILLIAN TURNER We've been married 46 years. We've been in love every day of my marriage. MUSIC - TRUE LOVE KEITH TURNER This is one of our favourite ones. Ah yes. LILLIAN TURNER As soon as that's on, played anywhere, we - that's our song, yeah that's our song. KEITH TURNER And it helps to bring back memories. Things were slipping by very, very quickly, my life was gradually being taken away from me. I used to love reading but it got to the stage that by the time I got to the end of a line I couldn't remember what I'd read. LILLIAN TURNER We used to like reading together but then we've had to stop all that because it's meaningless to Keith. KEITH TURNER One of my big problems was that I used to say to Lillian: "I'm just going to nip up to the loo." And I'd come back down again and she'd say to me: "Have you been?" And I'd say: "Been where?" If we were going out Lillian would say to me we'll go and so and so today and after a while I'd say okay where are we going? LILLIAN TURNER It was like having a baby again and a toddler. But with a child their memory improves, with him it was going backwards. ATKINSON Keith Turner is one of 50,000 people in the UK currently taking one of the four drugs used to treat Alzheimer's Disease, which are available on the NHS. Alzheimer's Disease is caused by a failure of a brain chemical needed for memory called acetylcholine. These drugs can temporarily delay and even improve memory loss. KEITH TURNER Aricept gave me back my memory. Now I can go out by myself, I don't wander, I can read a book and I can remember most of what I've read. I can go into a supermarket with six or seven items - a shopping list in my mind and I can get most of them. I can even drive the car. It's been a whole change of world, my life has been given back to me. ATKINSON Aricept and two other drugs were first licensed and available in 1997 and passed by the National Institute for Health and Clinical Excellence back in 2001. But three years later the institute decided to review those three and a fourth drug. Last spring it issued an initial finding saying that they're not cost effective and should be withdrawn. There was uproar from patients, professionals and manufacturers, who are now being allowed to present more information to NICE which is due to meet again on December 20th. In fact members of some 30 professional organisations have been lobbying the institute to change its mind. Old age psychiatrist, Professor Clive Holmes from the Moorgreen Hospital in Southampton, is one of them. HOLMES I've actually advised NICE directly on this and we've made it quite clear I think as a body, the Royal College of Psychiatrists, is quite clear in our own minds that these drugs have a benefit clinically and we all say that with a single voice. It will be absolutely devastating for us, both as a clinical service and for research in this country, it's the only treatment we have for these patients, you have to remember that. The treatments are modest but it is something and you do offer some help and maybe it may delay the progression of the illness by maybe two or three years but these patients haven't got very long anyway. So that might not seem like a very long time but when you've only got four or five years left actually that's very important quality time I think. DAVID WHITCOMBE They're definitely making me better. It's almost my wrong joke that my brain's getting better but no I think it is stopping it getting worse quickly. ATKINSON Can you give perhaps an example of why you feel that? DAVID WHITCOMBE Because I concentrate on the Telegraph crossword and I can get the odd answer to put in, sometimes I put the wrong ones in because Sue does them as well but yes that's helped and keeps me going a bit. ATKINSON David Whitcombe from Shropshire was diagnosed with Alzheimer's three years ago. His wife Sue says the drug is definitely slowing the progress of his disease. SUE WHITCOMBE He went on to galantamine right at the beginning - Reminyl is the trade name - and it did seem to support what he'd got left and instead of going down, nose diving down, he's taking a very slow decline. And to be honest I know we have these mini mental tests and his first one was something like 26 out of 30 and the effect of the Reminyl was that he improved one point each time until he actually got 29 out of 30. So I think it's supported him and it's very much slowed down the illness. HOLMES You can just tell what an impact they have clinically and you have to see patients to appreciate that. ATKINSON For people making the decisions do you feel they understand what the benefits you see are? HOLMES No I honestly don't think they do, I don't think they actually see the day-to-day consequences on patients, they don't actually have the contact with patients to see the subtle changes that we see. Patients have come to me saying their wife no longer knows who they are, they're no longer sleeping in the same bed because of that, and I've treated them with these drugs and they're allowed back into the bed, it makes massive impact - this chap's been sleeping downstairs on the sofa and now he can sleep with his wife again. Of course there's no economic value to that, no money has exchanged hands, but of course that's made a huge impact to his relationship with his wife. Another example would be of a daughter who's worried about her mother, her mother rings her constantly five or six times a day at work, it's driving her potty, I've started her on this medication and she said she's ringing once maybe twice a week now. There's no economic value to that but there's a clear reduction in those carers' burdens and stress because of it. ATKINSON So efficacy is not in question, scientists from all over the world have conducted 30 clinical trials which prove that the four drugs do work and NICE accepts that. But the big question is cost effectiveness - does that £2.50 per day or £900 a year provide enough improvement to make that cost worthwhile? Figures from the Alzheimer's Society shows 60% of people come off the drugs within six months because they don't work for them. The remainder see benefits for an average two to three years and in some cases as long as five years. So five years of treatment would cost the NHS a total of £4,500 per person. That compares with Herceptin for some cancers at £20,000 per person per year and beta-interferon for some cases of MS at £10,000 a year. Professor Martin Knapp is a health economist at the London School of Economics. KNAPP We don't have enough resources to go round and so somebody has to say is it worth spending more money on Alzheimer's or more money on breast cancer or more money on cardiovascular disease? Those are very difficult decisions and what NICE is trying to do is to make that decision-making basis much more explicit and based on a more robust set of information. ATKINSON The National Institute for Health and Clinical Excellence uses an economic model to work out the cost effectiveness of the drugs it assesses. It's tweaked to take into account relevant details of the drug in question. For example, social services costs would be factored in when assessing Alzheimer's drugs but not when assessing contraceptive drugs. For that the costs of unplanned pregnancies would be included. Alzheimer's campaigners have been pressing for the full details of how this computer model works. They say despite three applications using the Freedom of Information Act they're not satisfied with what they've seen. But NICE says it's given all the information there is and cannot divulge how the model works because its copyright is owned by a university. Professor Martin Knapp and other critics think the model is too simplistic and flawed. KNAPP The NICE model is very transparent but it's not I think robust enough to reflect the realities of Alzheimer's care within England and Wales today. The model that NICE use is fine in many shall we say physical health areas - in cardiovascular disease, in cancer, in surgery - it hasn't been shown yet to be sufficiently robust, in my view, in the mental health field and so the measure that they are using - NICE are using - is not really sensitive enough to the sort of changes that we see in many mental health areas such as Alzheimer's Disease and in consequence I think it paints a more pessimistic economic picture than it should. ATKINSON Professor Clive Ballard at the Alzheimer's Society agrees they're ignoring important factors. BALLARD The way that NICE have evaluated it, the only cost saving they've looked at, is delay to nursing home placement. Clearly in reality there's a lot of other costs that are also saved, particularly informal costs like the time of care givers looking after the people with dementia, from the trials that equates to about an hour a day. Even if you were costing it a minimum wage an hour a day of a carer's time would be more than twice the cost of the actual drug. So even in economic terms that would make very good sense. SUE WHITCOMBE I find it unbelievable when you think how many carers and how many professional people wrote to NICE, wrote to the MPs and they've chosen to ignore it, the fact £2.50 a day is nothing when you consider the cost of not prescribing the drugs. The people nose diving into full-time care, the cost to the NHS, when it gives the actual patient time to stay at home, time with the family, some feeling of self-worth they just totally - I think £2.50 to give them a good quality of life for longer rather than a strain on the NHS is just so short-sighted by NICE. DAVID WHITCOMBE One day I may have to go into a home, a lot of Alzheimer's peoples may have to go into the homes, surely that's more expensive than £2.50 a day. I'd like to find a nursing home that will look after you for £2.50 a day. KNAPP There is a real cost of delivery this kind of treatment but it's a small cost within the total package of services that people with Alzheimer's might use, whether it's healthcare or local authority social services or some other supports. And secondly that cost is likely for people that respond well to the drug to lead to considerable savings. Let's take an example of somebody who's beginning to develop Alzheimer's Disease, they're living in their own home or living with a relative, they need some support in the community from the health service, from home carer, a little bit of social work support. For them the cost would be about £50 a week today. If their Alzheimer's developed to the extent they needed to go into a nursing home the cost would be £450 a week. So the difference of £400. Now I've heard it suggested that somebody who responds well to these new medications would perhaps enjoy perhaps nine months, during which their cognitive function would remain at such a level that they could remain living in the community. Now for somebody with that experience the saving to the state, the family, would be around £16,000. ATKINSON We asked the National Institute for Health and Clinical Excellence to take part in the programme, a spokesperson told us: "The institute can't comment while the matter is still under review." They referred us to a statement made on July 19th by the Chief Executive Andrew Dillon. STATEMENT FROM NICE "We are acutely aware of our responsibility to people with Alzheimer's Disease, their families and carers to ensure that every effort is made to obtain all the available evidence on these drugs. We need to make the right decision based on all the relevant evidence. We think there is more data which could affect our decision and we're asking the drug companies for access to it." Even if the drugs are withdrawn those currently on them will be able to stay on them. It's newly diagnosed Alzheimer's patients who won't be allowed to get them. Ironically even though it's not licensed for patients with vascular dementia and Lewey Body's dementia many doctors are prescribing it. So whatever NICE decide this group of people will be allowed to continue taking the drug because the National Institute can only review drugs that are licensed. But if the Alzheimer's drugs are withdrawn some clinicians fear that a controversial group of drugs called neuroleptics or tranquillisers will be used in their place to combat symptoms like agitation. Professor Clive Ballard, from the Alzheimer's Society, says neuroleptics can have serious and sometimes fatal side effects in people with dementia. BALLARD In terms of safety there have been two recent very serious warnings - on in the UK and Europe around the risk of stroke, which was issued by the Committee of Safety of Medicines in the UK and illustrated that there's about a three-fold increase of stroke, risk of stroke, in people taking these drugs. The second, even more recently, was issued in the United States by the Food and Drug Administration Authority highlighting that there's almost a two-fold increase in mortality in people taking these drugs in the context of dementia to people who aren't. So these are really quite hazardous treatments for long-term use. ATKINSON As people with Alzheimer's and their carers wait for NICE's decision Professor Clive Holmes at Southampton's Moorgreen Hospital says he thinks it's a case of blatant discrimination. HOLMES There is a certain amount of ageism here. I think for some reason beyond the age of 65 our value in society is less. I can only say that I think if this was a disease which affected younger people this decision wouldn't have happened. I can't see how logically people would say no you can't have these drugs. SUE WHITCOMBE I think if David wasn't on the tablets, seeing how he's deteriorated over the last six months, I think I could well be in the local mental hospital with him. But I also think that probably the NHS would be bearing a far higher cost than actually prescribing the drug with the care, the respite, who knows it's different with each one, he might even have been in full-time care, you just don't know. So I think it's very short-sighted of NICE to consider £2.50 a day, which is after all only the cost of a couple of loaves of bread. MUSIC - TRUE LOVE LILLIAN TURNER Now it's so different, he's happy. I mean it's life again. We're partners again - we go on holiday, we go out for days - and he's reading. KEITH TURNER Where there is love the heart is light. Where there is love the day is bright. Where there is love there is a song to help when things are going wrong. When there is love there is a smile to make all things seem more worthwhile. I did quite well really, I can remember most of what I've read. LILLIAN TURNER Yes life is fantastic again. MUSIC - TRUE LOVE WAITE Keith and Lillian Turner and Bing Crosby and Grace Kelly ending that report by our disability affairs reporter Carolyn Atkinson. Well as she said NICE did turn down our bid for an interview on the subject of drugs for dementia but we are hoping to speak to a minister about dementia care generally at some time during our dementia month, we'll keep you posted. Back to the You and Yours homepage The BBC is not responsible for external websites |
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