The story so far

Alzheimer's drugs treatments have made a significant difference to the lives of people with dementia and their carers, but were subject to restrictions for a number of years following evaluation by the National Institute of Health and Clinical Excellence (NICE).

Alzheimer's Society campaigned for a number of years to reverse this decisions, and from June 2011 these drugs became available for people with Alzheimer's disease (please note that these drugs are not licensed for people with other forms of dementia). This page sets out some of the stages of our campaign.

The Hands off dementia drugs campaign

In March 2005 NICE published draft guidance recommending that Aricept, Reminyl and Exelon should no longer be available to patients on the NHS as they were not cost effective. It also recommended that Ebixa should not be prescribed, except within clinical trials.

Patient, carer and professional groups condemned this decision. Alzheimer's Society responded to this consultation. NICE also received more than 8,000 letters and emails in an unprecedented response to their public consultation.

Alzheimer's Society led the formation of the Action on Alzheimer's drugs alliance, which represented a wide range of over 30 organisations representing patients, carers and professionals. Over 120 MPs added their names to an early day motion in support of the campaign, and celebrities and local groups also supported the Hands off dementia drugs campaign.

Appealing the NICE decision

NICE reconsidered their decision in the light of these responses, and Alzheimer's Society contributed to a further consultation.

In 2006 NICE published the Final Appraisal Determination and recommended that Aricept, Reminyl and Exelon should only be available to people in the moderate stages of Alzheimer's disease (those with an MMSE score of between 10 and 20) and Ebixa should only be available as part of a clinical trial.

There were five separate appeals to this decision in July 2006.  Alzheimer's Society's appeal was supported by the Royal College of Nursing, Age Concern, and the Dementia Care Trust. We argued that NICE had not followed its process correctly, and that the decision was perverse in light of the evidence. However, the appeal was rejected - triggering protest marches across the country.

Eisai, the manufacturers of one of the drug treatments launched a judicial review of the decision in January 2007. Alzheimer's Society acted as an interested party. The High Court ruled that the NICE guidance breached disability and race discrimination law and NICE was ordered to make changes to its guidance. However, the court did not rule in favour of the charity's other arguments that NICE's evaluation of the benefits of the drugs to carers, and the costs of full time care, were flawed. As a result, people in the early stages of Alzheimer's disease would continue to be denied access to treatment on the NHS.

Eisai successfully appealed against the judgement that NICE did not have to provide the health economic model used to make their decision. Despite receiving comments on their model, and acknowledging the flaws, NICE found that correcting these flaws still did not make the drug treatments cost-effective in the mild stages.

It did, however, accept that the emergence of new evidence meant that the guidance should be reviewed as soon as possible.

Review and new draft guidance issued

A review of the NICE guidance on drug treatments for Alzheimer's disease began in 2010.  Alzheimer's Society submitted evidence to the review, and later to a consultation on the guidance.

We highlighted that although some of the shortcomings of the previous model have been addressed, there were still serious limitations in the current model. Alzheimer's Society representatives attended the appraisal committee to explain to the committee the impact of the disease on people's lives and their experience of drug treatment.

In October 2010, NICE issued new draft guidance, which was confirmed in January 2011.  The new guidance states that people with Alzheimer's disease should now have access to the drugs available. Three anticholinesterase drugs (Aricept, Exelon and Reminyl) are now available from the NHS for people in the early to moderate stages. A fourth drug (Ebixa) is available for people in the late stages, and in the moderate stages if they cannot tolerate the anticholinesterase drugs. Since June 2011, Primary Care Trusts have had a legal duty to provide funding for these drugs.  

This is a momentous stage of the access to drugs campaign and Alzheimer's Society particularly welcomes the removal of specific reference to MMSE score in the NICE guidance. Access to treatment will be based on a more holistic assessment of severity and response, rather than be bound by a score on one particular measure.

However, with dementia still underdiagnosed Alzheimer's Society's access to drugs campaign will continue, until everyone with dementia receives an early diagnosis and the support and treatment they need.