A rally is to take place in Bradford to protest over the decision not to make vital drugs available to people in the early stages of Alzheimer's Disease.

The rally will take place on Friday, November 17, in a city centre location and is being organised by the Bradford branch of the Alzheimer's Society.

It follows final guidance issued by The National Institute for Health and Clinical Excellence (Nice) last week which said Aricept (donepezil), Reminly (galantamine) and Exelon (rivastigmine) should only be used to treat those with moderate Alzheimer's.

Another drug, Ebixa (memantine), is only to be used in studies for people with moderately severe Alzheimer's Disease.

The decision came as a huge blow to campaigners who appealed against Nice's guidance at hearings in July.

Ruth Gallagher, Bradford branch manager of the Alzheimer's Society, said: "We are in the process of lobbying MPs and contacting lots of other groups who might like to come and support us.

"Our members are really worried about this decision.

"There are people who have had the drugs, and while they know they won't be taken away from them, they say it is awful that others will not be able to get them at an early stage like they did.

"Others are worried they will never have access to the drugs. It is difficult to see how the decision is going to work, but it is very wrong and we are very disappointed.

"It gives the impression that people with dementia are not worth £2.50 a day (the cost of the drug per patient) and that is a bad feeling."

Neil Hunt, of the Alzheimer's Society, has called for the Government to step in, but the Department of Health said it would be "entirely inappropriate" to over-rule Nice's decision.

Final details of the location and time of the protest are still being finalised. If you would like to take part, contact the Bradford branch of the Alzheimer's Society, at Skipton Chambers, 16-18 North Parade, Bradford, BD1 3HT, telephone (01274) 733880 or email: info@alzheimers-bradford.co.uk

BERYL'S STORY

The experience of one Bradford family illustrates the unfairness of the decision by The National Institute for Health and Clinical Excellence (Nice), it has been claimed.

Beryl Jackson, 66, is the youngest of four siblings. She and her sister have watched their elder brother and sister, aged 78 and 77, succumb to Alzheimer's.

While genetic factors only directly cause the disease in a small number of families, Mrs Jackson is worried that she and her sister are more likely to develop the disease themselves.

Now, however, if Mrs Jackson, of Coleridge Gardens, Idle, or her sister, were to be diagnosed with Alzheimer's, they would not be given early access to Aricept, as her brother and sister were.

"My eldest siblings were diagnosed with Alzheimer's at about the age of 72 and 75," she said.

"Both were given Aricept at an early stage and benefited from this. For my sister it has been difficult because her husband died and she was on her own but Aricept worked quite well.

"She is now in a care home because she was forgetting to eat. You have to be very patient with her because she is very forgetful.

"My brother lives with his wife and she looks after him but it is difficult for her.

"My sister and I are worried that we could have the genes and also develop Alzheimer's - where does this decision leave us, with no prospect of tablets when we need them?

"It is the elderly who get Alzheimer's and most will have paid National Insurance all their working lives but are denied the help they need.

"I just think why make these drugs if they will not give them until it is too late. It is unfair to build up your hopes just to take them away.

"It is likely that some of the committee of Nice will also develop Alzheimer's one day. I wonder how they will react when they are refused treatment."

e-mail: claire.lomax@bradford.newsquest.co.uk.

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