Alzheimer's drugs policy outrage

Alzheimer's disease groups have attacked draft guidance from the NHS medicines watchdog restricting access to certain drugs.

Donepezil, rivastigmine and galantamine would be provided on the NHS, but only when patients have reached a moderate stage of the condition.

The National Institute for Health and Clinical Excellence has said it will issue its final guidance in July.

Campaigners expressed disappointment NICE has not altered its views.

For what other condition would you wait until people decline so much they can no longer look after themselves before giving them treatment?

Professor Clive Ballard, Alzheimer's Society

They said hundreds of thousands of people with dementia would be forced to wait for their condition to deteriorate into "confusion and fear" before they could get the treatments.

Neil Hunt of the Action on Alzheimer's Drugs Alliance, which represents over 30 charities and professional organisations, said: "This decision is outrageous.

"It will rob families of precious time in the early stages of dementia and deprive people of comfort and dignity in the final stages of their illness."

The drugs, which campaigners estimate cost £2.50 per day per patient, improve memory and can make daily living tasks easier.

'Impossible position'

NICE guidance in 2001 that said the drugs should be used as standard.

But in July last year, NICE said access should be restricted because they were not good value for money.

It's latest proposals are subject to an appeal period until June 15, during which organisations can appeal against the guidance.

The final guidance will only apply to newly diagnosed patients.

Those already taking the drugs will continue to do so.

But Professor Clive Ballard, of the Alzheimer's Society, said that under NICE's recommendations: "Doctors will also be forced into the impossible position of watching patients deteriorate before they prescribe drugs they know will help.

"For what other condition would you wait until people decline so much they can no longer look after themselves before giving them treatment?

"You would not wait till someone is suicidal before giving them an antidepressant."

Professor Ballard said withdrawing treatments when people entered the severe stages of dementia, leaving people to rely on "dangerous and unlicensed sedatives" as the only alternative.

Benefit

There was an outcry last March when NICE suggested that the drugs should not be funded by the NHS because they were not cost-effective.

The manufacturers were asked to produce further data - and NICE changed its position after looking at the new evidence.

NICE said that making the drugs available to people in the moderate stages of Alzheimer's will still benefit about 40% of those with the condition.

Patients' status would be determined by how they perform in a test called the Mini-Mental State Examination, or MMSE.

Although NICE guidelines cover England and Wales, the health bodies in Scotland often follow suit.