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TX: 05.06.06 - Alzheimer's Drugs

PRESENTER: WINIFRED ROBINSON
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. 

ROBINSON
There's been a small demonstration this morning outside the Department of Health in London against a recommendation to withhold drugs to treat Alzheimer's Disease from some patients. The National Institute for Health and Clinical Excellence or NICE, as it's called, wants to limit supply of the drugs on the NHS to those in the so-called moderate stage of the condition. The recommendation has an appeal period ending on the 15th June. Although the numbers allowed to demonstrate outside government departments are limited the Alzheimer's Society says 9,000 people have written in protest and that's believed to be the biggest ever response to a decision by NICE.

Karen Hoggan joined the protestors outside the Department of Health headquarters earlier today.

HOGGAN
There's about 10 people picketing here in the sunshine outside the Department of Health on Parliament Street, people suffering from Alzheimer's and their carers. They're carrying placards with slogans like 'Hands Off Our Drugs', 'We Are Worth £2.50 A Day', 'Hands Off Dementia Drugs', 'NICE Takes The Biscuit', 'Am I Not Worth £2.50?' These people are angry, they want to get across just how angry they are at the recommendation that access to drugs to treat Alzheimer's should be limited.

Well among the protestors is the actress Linda Bellingham, well known for her appearances in the Oxo TV commercials and most recently The Bill.

BELLINGHAM
My mother suffered with Alzheimer's and she died last year. The onset of Alzheimer's was over a period of eight, nine years, started gradually and built up. And obviously until you actually have experienced the effect on not just my mother but the rest of the family you can't possibly understand and I'm here because I just feel very strongly that there are people who are going to suffer more than they should have to if NICE takes away these drugs.

HOGGAN
What difference do you think it will make to people's lives if the recommendations are carried through and the access is limited?

BELLINGHAM
There are people who benefit hugely and could survive in their own homes with a little help from a loved one, they wouldn't have to go to the state for caring.

HOGGAN
But if it is just prolonging that period of lucidity is it worth it?

BELLINGHAM
Well you don't stop providing medicine for people who've got heart complaints or people with cancer that are going to ultimately die, you don't say well go in that corner and die painfully do you.

HOGGAN
Well also here are Keith and Lillian Turner from Hastings. What's made you feel so strongly that you've come along here this morning?

KEITH TURNER
Well I was the lucky ones, I was put in Aricept at the very early stages of the condition. I've been guaranteed them for the rest of my life. I'm here fighting today for all the other people who are out there looking to us for hope, those people who are now going to be denied these drugs under the new NICE proposal. I not only think they're cruel but I also think it's so unjust because it's the difference between £2.50 and a person's life and how can you put a price on somebody's life? You can't.

HOGGAN
So it's a £2.50 a day for the drug?

KEITH TURNER
Two pound 50 per day per patient, yes.

HOGGAN
What difference has the drug made to you?

KEITH TURNER
It's given me back my life, it's given back my independence. I'm now able to live a completely normal and independent life, whereas before I had to be a burden on my wife - she was my carer - we had to go everywhere together, I had to rely on her for so much. Life was slipping away so fast. But that has now all changed because of this drug Aricept.

HOGGAN
Lillian, what difference have you noticed since Keith has been taking the drug?

LILLIAN TURNER
Oh it's completely different. Before he took the drug it was like having a big child, I had to be there everywhere with him, keep an eye on him, make sure he didn't go wandering. But since he's been on Aricept well we're back to normal, to a few years ago.

HOGGAN
Andrew Chidgey is the Head of Policy and Campaigns at the Alzheimer's Society. What clinical evidence is there that these drugs actually make a difference?

CHIDGEY
There's a wealth of clinical evidence. The strange thing is that NICE have actually accepted that these drugs provide clinical benefits to people, what they're actually saying is we can't afford to pay £2.50 a day for people with Alzheimer's Disease in the early and late stages to have access to treatment.

HOGGAN
You have got a couple of weeks to appeal, can you really come up with anything that might change their minds?

CHIDGEY
Well we've got a huge amount of evidence from clinical specialists and also from clinical trials which shows that people get serious benefit from treatment. We've also got a lot of issues with the specific process, in the way that NICE has handled it. So we're going to be putting in objections about the way they've used the evidence, the way they've excluded particular types of evidence and we're also going to be calling on clinicians to tell NICE again why they mustn't keep this decision in place.

ROBINSON
Andrew Chidgey of the Alzheimer's Society talking to Karen Hoggan outside the Department of Health earlier today. As you'd expect we invited NICE - the National Institute for Health and Clinical Excellence - to come on to the programme but a spokesman for the institute said: It would be inappropriate while the appeal period is still underway.


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: 05.06.06 - Alzheimer's Drugs

PRESENTER: WINIFRED ROBINSON


ROBINSON
There's been a small demonstration this morning outside the Department of Health in London against a recommendation to withhold drugs to treat Alzheimer's Disease from some patients. The National Institute for Health and Clinical Excellence or NICE, as it's called, wants to limit supply of the drugs on the NHS to those in the so-called moderate stage of the condition. The recommendation has an appeal period ending on the 15th June. Although the numbers allowed to demonstrate outside government departments are limited the Alzheimer's Society says 9,000 people have written in protest and that's believed to be the biggest ever response to a decision by NICE.

Karen Hoggan joined the protestors outside the Department of Health headquarters earlier today.

HOGGAN
There's about 10 people picketing here in the sunshine outside the Department of Health on Parliament Street, people suffering from Alzheimer's and their carers. They're carrying placards with slogans like 'Hands Off Our Drugs', 'We Are Worth £2.50 A Day', 'Hands Off Dementia Drugs', 'NICE Takes The Biscuit', 'Am I Not Worth £2.50?' These people are angry, they want to get across just how angry they are at the recommendation that access to drugs to treat Alzheimer's should be limited.

Well among the protestors is the actress Linda Bellingham, well known for her appearances in the Oxo TV commercials and most recently The Bill.

BELLINGHAM
My mother suffered with Alzheimer's and she died last year. The onset of Alzheimer's was over a period of eight, nine years, started gradually and built up. And obviously until you actually have experienced the effect on not just my mother but the rest of the family you can't possibly understand and I'm here because I just feel very strongly that there are people who are going to suffer more than they should have to if NICE takes away these drugs.

HOGGAN
What difference do you think it will make to people's lives if the recommendations are carried through and the access is limited?

BELLINGHAM
There are people who benefit hugely and could survive in their own homes with a little help from a loved one, they wouldn't have to go to the state for caring.

HOGGAN
But if it is just prolonging that period of lucidity is it worth it?

BELLINGHAM
Well you don't stop providing medicine for people who've got heart complaints or people with cancer that are going to ultimately die, you don't say well go in that corner and die painfully do you.

HOGGAN
Well also here are Keith and Lillian Turner from Hastings. What's made you feel so strongly that you've come along here this morning?

KEITH TURNER
Well I was the lucky ones, I was put in Aricept at the very early stages of the condition. I've been guaranteed them for the rest of my life. I'm here fighting today for all the other people who are out there looking to us for hope, those people who are now going to be denied these drugs under the new NICE proposal. I not only think they're cruel but I also think it's so unjust because it's the difference between £2.50 and a person's life and how can you put a price on somebody's life? You can't.

HOGGAN
So it's a £2.50 a day for the drug?

KEITH TURNER
Two pound 50 per day per patient, yes.

HOGGAN
What difference has the drug made to you?

KEITH TURNER
It's given me back my life, it's given back my independence. I'm now able to live a completely normal and independent life, whereas before I had to be a burden on my wife - she was my carer - we had to go everywhere together, I had to rely on her for so much. Life was slipping away so fast. But that has now all changed because of this drug Aricept.

HOGGAN
Lillian, what difference have you noticed since Keith has been taking the drug?

LILLIAN TURNER
Oh it's completely different. Before he took the drug it was like having a big child, I had to be there everywhere with him, keep an eye on him, make sure he didn't go wandering. But since he's been on Aricept well we're back to normal, to a few years ago.

HOGGAN
Andrew Chidgey is the Head of Policy and Campaigns at the Alzheimer's Society. What clinical evidence is there that these drugs actually make a difference?

CHIDGEY
There's a wealth of clinical evidence. The strange thing is that NICE have actually accepted that these drugs provide clinical benefits to people, what they're actually saying is we can't afford to pay £2.50 a day for people with Alzheimer's Disease in the early and late stages to have access to treatment.

HOGGAN
You have got a couple of weeks to appeal, can you really come up with anything that might change their minds?

CHIDGEY
Well we've got a huge amount of evidence from clinical specialists and also from clinical trials which shows that people get serious benefit from treatment. We've also got a lot of issues with the specific process, in the way that NICE has handled it. So we're going to be putting in objections about the way they've used the evidence, the way they've excluded particular types of evidence and we're also going to be calling on clinicians to tell NICE again why they mustn't keep this decision in place.

ROBINSON
Andrew Chidgey of the Alzheimer's Society talking to Karen Hoggan outside the Department of Health earlier today. As you'd expect we invited NICE - the National Institute for Health and Clinical Excellence - to come on to the programme but a spokesman for the institute said: It would be inappropriate while the appeal period is still underway.



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