Alzheimer's decision: "is this the sort of society we want to live in?"

By Tony Watts - Editor - 12/08/2007

The High Court has upheld the National Institute for Health and Clinical Excellence (NICE) decision not to recommend drugs for early-stage Alzhiemer’s Disease.

The decision has been vigorously contested by campaigners, including the Alzheimer’s Society, who say that the £2.50 a day that the drugs cost is far less than the benefits of deferring the symptoms.
 
One small victory for the campaigners is that the NICE has been told to rewrite guidance on how the disease is assessed: tests to assess Alzheimer's are inaccurate in people with learning difficulties or those with English as a second language.

Neil Hunt, Chief Executive of the Alzheimer’s Society described the result as "Deeply disappointing for everyone in the early stages of Alzheimer’s and their carers.

"Without further change to the guidance, people in the early stages of the disease will still be refused drugs because NICE considers that these people are not worth £2.50 a day. This is insulting and devastating news. People will be forced to deteriorate before they get the treatment they need.  Is this the sort of society we want to live in?
 
‘NICE failed to listen to the views of thousands of carers who told them drug treatments make a huge difference to their lives. It is deeply disturbing that a public body, required to use rigorous standards of evidence based decision making, can simply guess at vital data. This is simply unacceptable."

Commenting on the decision, Mervyn Kohler, Help the Aged special adviser said: “Only earlier this week, the Care Minister was talking about 'bringing dementia out of the shadows': one of the shadows into which it had been cast was the NICE guidance on various drug treatments.  It is important that NICE examines its guidance on these drugs, not just in the light of the ruling today but bearing in mind the public concern which the case has demonstrated."      

Heide Baldwin, Royal College of Nursing Chair of Mental Health and Older People's Forum said: "We are delighted that the Judicial Review has recognised the limitations of the current NICE testing guidance, and have told NICE to review it.  But we remain disappointed that those with mild and severe dementia will not have access to drugs that could drastically improve their quality of life. 

"Nurses will continue to be put in the difficult position of diagnosing dementia in the mild stage and working with families whose relatives have severe dementia knowing that there are treatments available but not on the NHS. Furthermore, the NICE guidelines contradict the three principles of the national dementia strategy launched this week for promoting health awareness, early diagnosis and access to high quality treatments."

Harriet Millward, deputy chief executive of the UK's largest dementia research charity, the Alzheimer's Research Trust, commented: "We are devastated that these drugs will remain unavailable on the NHS to people with early-stage Alzheimer's when they might benefit from them.

"We urgently need to do more research to find better treatments, but research is currently hugely underfunded - we are scraping for every penny to fund vital work."
 
Andrew Dillon, chief executive of NICE said:  "Alzheimer's disease is a devastating illness, but the evidence indicates that these drugs are simply not effective for some patients.”