NICE divided over dementia drugs

Members of the Action on Alzheimer's Drugs alliance have united to ensure that the collective expert views of people with dementia, carers, and health professionals are not ignored yet again.

The National Institute for Health and Clinical Excellence (NICE) has issued a confused message over the future of drug treatments for Alzheimer's disease. NICE received an unprecedented public and professional response to its draft guidance issued in March but its appraisal committee has rejected all of this expert evidence. NICE's guidance executive, chaired by its chief executive, has intervened at the last minute to stop the final guidance being published to the NHS. The executive has demanded that the appraisal committee look again at the evidence, prolonging the uncertainty for thousands of people with dementia.

Neil Hunt, from the Action on Alzheimer's Drugs alliance says:

'We are astonished that the appraisal committee has not changed its mind and has rejected the concerns of thousands of people with dementia, carers and health professionals. We believe there is overwhelming evidence which clearly shows that these drugs work and are good value for money, and further research should not be needed. However, we are relieved that NICE's executive has prevented this appalling guidance being issued to the NHS. We hope that when NICE reconsiders the evidence it will realise that the only drug treatments available for people with Alzheimer's disease should not be denied to people because of cost.'

Dr David Wilkinson, a leading old age psychiatrist, and member of the new alliance says:

'NICE's appraisal committee has used a flawed economic model to decide whether the benefits these drug treatments give to vulnerable people with Alzheimer's disease are good value for money. We have always maintained that NICE would approve the treatments if it only based its recommendations on the cost of the people who benefit, and included the improvements the drugs bring to the lives of carers. Whilst we believe this reanalysis is an unnecessary exercise we hope that it will lead to the outcome that patients and professionals desire - that drug treatments that cost just £2.50 a day are available to the people who need them.'

Diana Barnes, a person with Alzheimer's disease, says:

'When I first started to take a drug treatment for Alzheimer's disease it was like a fog in my head had been lifted. I still have good days and bad days, but the drugs have made a real difference. I know the drugs have improved my quality of life so I am astounded to hear that the Government is considering withdrawing them from NHS prescriptions. It seems madness to take away things that are helping people like me to live as normally as possible. They talk about money, but these drugs only cost £2.50 a day.'

For media enquiries, contact the Alzheimer's Society press office.

Notes for editors

• Members of the Action on Alzheimer's Drugs alliance include: Alzheimer's Society, Royal College of Psychiatrists, Royal College of Nursing, Age Concern England, Dementia Care Trust, British Geriatrics Society, Alzheimer's Research Trust, The Research Institute for the Care of the Elderly, Dementia Research Group, Institute of Psychiatry, Counsel and Care, Institute for Ageing and Health (Newcastle).
• Neil Hunt is chief executive of the Alzheimer's Society. Dr David Wilkinson is a spokesperson for the Royal College of Psychiatrists.
• On 1 March 2005 the National Institute of Clinical Excellence issued draft guidance stating that drug treatments for Alzheimer's disease should be withdrawn from the NHS because of cost. The final decision on NICE's health technology appraisal is now expected in October 2005 in the meantime people with dementia should continue to receive drug treatments on the NHS.
• The drug treatments under review are Aricept, Exelon, Reminyl and Ebixa.
• Aricept, Exelon and Reminyl were recommended for prescription by the NHS for mild to moderate Alzheimer's disease in 2001. Ebixa is licensed for prescription for moderate to severe Alzheimer's disease; no NICE guidance on Ebixa has been published yet.
• Over 750,000 people in the UK have dementia. More than half have Alzheimer's disease.
• Dementia affects one in 20 people over the age of 65 and one in five over the age of 80.
• There are 18,500 people in the UK under the age of 65 with dementia.
• For information and advice on Alzheimer's disease or other forms of dementia call the Alzheimer's Society national helpline on 0845 300 0336.