Alzheimer's drugs' fate hangs in the balance

A leading alliance of over thirty professional and charitable organisations has condemned NICE's earlier proposal to deny drug treatments to people with mild or severe Alzheimer's, and highlighted emerging new evidence supporting the availability of the drug treatments on the NHS.

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

'It's crunch time as NICE meets to decide the fate of the only drug treatments for people with Alzheimer's disease. If the current proposal remains unchanged people in England and Wales will be victimised by a decision that is unworkable and unethical. It has been an agonising year for people with Alzheimer's disease since NICE's first ruling. Just because the NHS is struggling to balance its books doesn't mean it should wash it hands of the very people it was founded to protect. These drugs cost just £2.50 a day. NICE was set up to promote clinical excellence but if it doesn't revise this proposal dementia care will be left in a state of disarray.'

In recent months there has been emerging new evidence around the benefits and potential use of the drug treatments. However, NICE's guidelines prevent it from considering these developments when reaching its final decision. Recent developments include:

The drug donepezil can reverse some aspects of cognitive and functional deterioration seen in patients with severe Alzheimer's disease, according to two large randomised trials, one published in the Lancet on 1st April 2006 and one presented at the Springfield Conference in Geneva last week.

A new survey by the Alzheimer's Society of nearly 200 care homes released on Thursday 20 April 2006 revealed the high frequency of challenging behaviour by people with dementia, and the distress this causes to care staff. Research has shown that Ebixa (memantine) can reduce the behavioural symptoms associated with dementia. Ebixa is the only drug treatment licensed for people in the moderate-severe stage of Alzheimer's disease. NICE asked for more information about how people with dementia with behavioural symptoms respond to the drugs. However, it ignored this data and recommended that Ebixa should not be available on the NHS.

The Cochrane Collaboration, the leading body for undertaking systematic reviews of treatments, published an update of the reviews of the three anticholinesterase drugs for people with Alzheimer's disease in January 2005. It concluded that the treatments are effective for people in the mild and moderate stages of the illness and that it is impossible to make a reliable assessment of cost effectiveness based on the limited health economic data available.

Dr David Wilkinson, a leading old age psychiatrist, and member of the alliance adds,

'Alzheimer's disease impacts on every aspect of a patient's life not just the memory loss that was the basis of the majority of the evidence reviewed by NICE. It also causes difficulty in communicating, inability to perform day-to-day tasks, and changes in personality and mood such as agitation and aggression that are particularly distressing for carers. Preventing the worsening of this condition should be a priority. These drugs can do that at a cost of £2.50 a day.'

The Action on Alzheimer's Drugs alliance is calling on NICE to revise its decision and ensure everyone with dementia who may benefit from the drug treatments has access to them.

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

Notes for editors

• Interviews with people with dementia and their carers available on request.
• The National Institute for Health and Clinical Excellence (NICE) is carrying out an appraisal of the four drug treatments currently licensed for Alzheimer's disease (Aricept, Exelon, Reminyl and Ebixa). NICE issued a draft decision for consultation in March 2005. It proposed that none of the four treatments should be funded by the NHS. It acknowledged that the drugs were clinically effective, but stated that they were not cost effective. There was an unprecedented response to this guidance, with nearly 8,000 people with dementia, carers and professionals writing to express their outrage. NICE considered this response and in July asked the pharmaceutical companies for more data. In January 2006 NICE issued a revised draft decision for consultation. It recommended severe restrictions be placed on the prescription of anticholinesterase drug treatments and that Ebixa should not be prescribed on the NHS. The NICE committee will meet on April 27th 2006 to discuss the response to its second draft decision and to come to a final decision. This will be announced at some point after that meeting date within 5 weeks.
• People currently on the drug treatments will continue to receive them.
• Approximately 381,920 people have Alzheimer's disease in England and Wales. Approximately 72,565 people are in the mild stages of dementia and 309,355 people are in the moderate to severe stages.
• The Action on Alzheimer's Drugs alliance campaigns for fair access to Alzheimer's drug treatments. It launched the hands off dementia drugs campaign. http://www.handsoffdementiadrugs.org.uk/
• Members of the Action on Alzheimer's Drugs alliance include: Alzheimer's Society, Royal College of Psychiatrists, Royal College of Nursing, Age Concern England, National Pensioners Convention, Carers UK, Dementia Care Trust, British Geriatrics Society, Alzheimer's Research Trust, Research Institute for the Care of the Elderly, North West Dementia Centre, Institute of Psychiatry, Counsel and Care, English Community Care Association, Institute for Ageing and Health (Newcastle), British Neuropsychiatry Association, For Dementia, Help the Aged, Nottingham Group for the Study of Neurodegenerative Disorders (University of Nottingham),National Care Forum, BRACE (Bristol Research into Alzheimer's and Care of the Elderly), Down's Syndrome Association, Centre for Ageing and Mental Health (Staffordshire University),Alzheimer's Disease Research Group (University of Manchester),Dementia Plus, Trent Dementia Services Development Centre, Dementia Services Development Centre Wales, Memory Assessment and Research Centre (University of Southampton), Dementia Services Development Centre South East, London Centre for Dementia Care, Alzheimer's Concern Ealing, North West Dementia Centre.
• Neil Hunt is chief executive of the Alzheimer's Society.
• 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.
• For information and advice on Alzheimer's disease or other forms of dementia call the Alzheimer's Society national helpline on 0845 300 0336.