Withdrawal of drug treatments for mild Alzheimer's disease

Briefing issued to MSPs during a photocall at the Scottish Parliament on 22 June 2006

“After my diagnosis with Alzheimer’s, I had virtually no life until I was prescribed Aricept. This brought about a complete turnaround and my family noticed the difference immediately. They call it “my wee golden pill”. With the encouragement of other members of the Scottish Dementia Working Group I’m regaining my self confidence and doing things I thought I’d never do again” David Turner

For £2.50 a day someone with early stage Alzheimer’s disease could be restored to a normal state of health and well-being

It is unlikely that the National Institute of Clinical Evidence (NICE) will change their latest position on dementia drug treatments, leaving newly diagnosed people with mild Alzheimer’s disease without the currently available drug treatments. NHS Quality Improvement Scotland will not challenge the scientific and cost effectiveness arguments of NICE. This will result in people who would have benefited from the drug treatments being denied the opportunity.

Alzheimer Scotland is calling on Members of the Scottish Parliament to lobby the Scottish Executive Health Department to instruct NHS QIS to override the likely NICE recommendations not to use these treatments for new patients in the early stages of Alzheimer’s disease. NHS QIS should be asked to draw up a protocol for the use of these treatments based on the recommendations of the SIGN Guidelines ‘Management of Patients with Dementia’ and consultation with representatives of the Royal College of Psychiatry and people with Alzheimer’s disease.

Why NICE proposals should not be adopted in Scotland

• The NICE assessment does not capture the quality of life benefits for people with dementia. Quality of life benefits are personal to the individual and have been shown to be difficult to capture with standard assessment tools.
• The NICE assessment does not give sufficient weight to the impact of the illness on the carers of people with dementia.
• The Scottish Intercollegiate Guidelines Network (SIGN) guidelines ‘Management of patients with dementia’ recommended the use of these treatments. The SIGN Guidelines also recommend cholinesterase inhibitor treatment for people with severe Alzheimer’s disease. The NICE Final Appraisal Document fails to recommend memantine and does not consider cholinesterase inhibitors for this group of patients.
• NICE did not give sufficient attention to current clinical practice where these treatments are withdrawn from patients who do not or no longer benefit. NICE commissioned additional retrospective analyses which showed that discontinuing treatment when it was ineffective made these drugs cost effective. However, they rejected this evidence on grounds of possible sample bias. Alzheimer Scotland believes that this is important information and should not be ignored because it reflects clinical practice.
• These are the only treatments available for early stage Alzheimer’s disease. Until they are superseded by new and better treatments they ought to be available for patients where it can be shown that they are benefiting from receiving them.
• Withdrawal of the availability of these treatments for early stage Alzheimer’s disease will undermine the recent improvements in diagnostic services and the ability to diagnose the illness early so that patients and their families can plan for the future.
• People will be reluctant to seek a diagnosis if they know that in the initial stage of the illness there is no treatment available
• The lack of drug treatments for people with early stage of Alzheimer’s disease will make it even more difficult for them to develop a positive approach to managing their symptoms and the knowledge that they have a degenerative illness
• Denial of these treatments will also undermine the principle of the NHS in Scotland that treatment should be based on patients clinical need and not their ability to pay. Those who can afford to do so will pay for these treatments increasing health inequality.
• Scotland lags well behind England in healthy life expectancy. Offering people with Alzheimer’s disease these treatments is an opportunity to contribute to increasing the healthy life expectancy of some of the 10,000 people in Scotland with early stage Alzheimer’s disease.

What happens now
NICE received five appeals against its Final Appraisal Determination and Guidance. It will be hearing oral evidence from the appellants on Thursday 13 and Friday 14 July. Thereafter NICE will decided whether to uphold the appeals or if its guidance will remain unchanged. It is likely that this decision will be announced during the Parliament summer recess. It is therefore crucial that Members of the Scottish Parliament make their views known to the Scottish Executive now.

“My wife has been taking galantamine for 3 years and is in the early stages of Alzheimer’s. Before she took it she was depressed, anxious, very negative and difficult to support. Within a couple of weeks of taking the drug her attitude changed to one much more positive and she has not been depressed since and I have been able to care for her without too much difficulty.” Mr JLJ

27 June 2006