Alzheimer Scotland disappointed by today's drug decision.

10 August 2007
FOR IMMEDIATE RELEASE
To: News/Health Editors

Alzheimer Scotland disappointed by today’s drug decision.

Alzheimer Scotland expressed bitter disappointment at today’s court decision not to reverse the ban on drugs in early Alzheimer's disease. A judicial review at the High Court in London upheld the National Institute for Clinical Excellence (NICE) guidance limiting Alzheimer's drugs to people in the moderate stage of the illness on grounds of cost-effectiveness. Scottish guidance from NHS Quality Improvement Scotland is based on NICE’s assessments, so people in Scotland with early-stage Alzheimer's disease also face being denied treatment on the NHS.

Alzheimer Scotland Chief Executive Jim Jackson said, “This is a bad day for people with Alzheimer's disease. Scottish clinical guidelines are clear that these drugs are clinically effective and can help people at all stages of Alzheimer's disease. We know they’re not wonder drugs and they don’t help everyone. But we cannot agree that it is not cost effective to offer people diagnosed with this devastating illness the chance of a better quality of life early on, while they still have a chance of regaining or maintaining something like their normal abilities. These treatments can also have important benefits for the families and carers who are also affected by the disease.

We call upon NHS Quality Improvement Scotland to issue guidance which is in the best interests of patients, takes account of current clinical practice, and recognises the limitations of the research data.”

The news was greeted with outrage by people with early stage dementia who are already using the drugs. Ted Cleland, from Edinburgh, who was diagnosed with Alzheimer's disease about three years ago and was prescribed Aricept immediately , said, “If medication had not been available to me from the point of diagnosis I would have been steadily deteriorating. Instead, my test score has remained stable. I can only attribute this to the medication. It will be a tragedy for others like myself in the future if they cannot receive the medication from the point of diagnosis.”

Dr Alan Hughes, Consultant Psychiatrist - Senior Citizens and Clinical Co-ordinator, Elderly Services Renfrewshire and Inverclyde, said, “This is a very disappointing decision which still leaves us with the same problems we have had – we’re having to accept that people are going to experience unacceptable deterioration which could have been delayed or avoided . The NHS does not do this for any other comparable condition.”

The judgement did find against NICE on the count of discrimination, relating to how people who have learning difficulties or who have English as a second language are assessed. NICE has been told to rewrite guidance on how the disease is assessed in these circumstances. However, changing how the stage of illness is assessed in people with special needs may have the effect of reducing their access to the drugs early on in the illness, as they will less likely to be assessed as having moderate stage Alzheimer's disease and thus to qualify for treatment.

The case highlighted serious flaws in the process used by NICE to assess cost effectiveness, with the benefits to carers underestimated and a method of calculation which was not fully disclosed.

Although NICE’s decisions do not cover Scotland, NHS Quality Improvement Scotland bases its guidance on NICE decisions, and issued guidance banning treatment of early and late stage dementia on the same day as NICE, 22 November 2006.

Please give our Freephone 24hr Dementia Helpline telephone number: 0808 808 3000 and our web page address: www.alzscot.org at the end of articles.

People with early-stage Alzheimer's disease and/or carers available for interview.

Further information:

• About 40,000 people in Scotland have Alzheimer's disease.
• Alzheimer's disease is the most common form of dementia.
• About 4,000 people are diagnosed in Scotland with Alzheimer's disease each year.
• From 2001, treatment with the cholinesterase inhibitor drugs (donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl) was available on the NHS for people with mild to moderate Alzheimer's disease.
• NICE’s 2006 guidance, implemented simultaneously in Scotland by NHS Quality Improvement Scotland on 22 November last year, withdrew availability for people with mild Alzheimer's disease, and also failed to make treatment available to those in the late stages of the illness as indicated by clinical guidelines form the Scottish Intercollegiate Guidelines Network (SIGN). This was on grounds of cost-effectiveness.
• The drugs cost about £1,000 a year per person.
• Early treatment is the only chance people have of regaining a functional level close to their normal abilities – there is no chance of this if they have to wait until the disease has progressed.

Alzheimer Scotland

Alzheimer Scotland is Scotland’s foremost voluntary organisation working for people with dementia and their carers. It:

• speaks out for the rights and concerns of people with dementia and their carers;
• operates services on over 60 sites throughout Scotland providing practical services such as day, evening and weekend centres, home care and befriending and carers' support services;
• provides the 24 hour national freephone Dementia Helpline (0808 808 3000);
• has a research programme.