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The question of who should have access to Alzheimer's drugs has sparked a heated debate on the way the National Institute for Health and Clinical Excellence (NICE) decides whether treatments are cost effective. Sir Iain Chalmers attacked the Alzheimer's Society (BMJ 2007;335:400 doi: 10.1136/bmj.39309.704016.BD) for our legal challenge against the NICE guidance on Alzheimer's drugs. He alleges that we formed an alliance with pharmaceutical companies to the detriment of people affected by dementia and challenges us to be transparent about our commercial relationships.
I wonder why supposedly informed commentators cannot conceive that our actions might be genuinely informed by the views of our members. Earlier this year, I met with NICE chairman Sir Michael Rawlins to challenge his apparent view that commercial interests were driving the campaigning agenda of the society. Now another associate of NICE repeats these tired allegations. We are an independent organisation. Funding is a massive challenge for us, of course. But it is a fundamental principle that we speak and act on the basis of our own knowledge—however inconvenient that may be for those who would prefer us to step into line.
We went to court independently and funded our case through public donations. We were there to represent people with dementia and their carers. It was the logical extension of a campaign that began when NICE published its draft guidance, in March 2005, and proposed that no one with Alzheimer's should have access to drugs on the NHS. It should not be forgotten that our efforts changed that proposal so that today those in the moderate stages of the disease have access to treatment.
On Sir Iain's specific challenge to be transparent, we already publish details of donations from pharmaceutical companies on our website (0.1% of our income in the last financial year), along with our policy on working with them (www.alzheimers.org.uk/About_our_work/About_the_Society/pharma.htm).
He also suggests that we should publicly call for all trial data to be published. We have done this on a number of occasions and will continue to do so.
NICE has a crucial job to do in recommending how the NHS should direct finite resource. However, I cannot agree that we should not have responded to important guidance that breached both the Disability Discrimination Act and the Race Relations Act. The High Court judgment by Mrs Justice Dobbs found that NICE “failed to avoid discrimination against the relevant groups,” including people with learning disabilities and those whose first language is not English, despite having been warned numerous times that this was a serious problem. For a public body to act in this way is alarming and cannot go unchallenged. That the Alzheimer's Society was prepared to make that challenge means that, in our estimate, 25000 people will now have equal access to effective treatments.
Our campaign was based firstly on the experience of people with dementia and carers and secondly the clear view of clinicians and the Royal College of Psychiatrists that early diagnosis and treatment of dementia is crucial. Early intervention is the key to putting people in control of their condition and enables them to access the information and support they need.
In addition, the Mini Mental State Examination does not provide an accurate assessment of severity of dementia. There is currently no accurate diagnostic tool for Alzheimer's disease, and until then a clinician's judgment will always be more significant. NICE recognised this separately in the dementia care guidelines it published on the same day as the disputed drugs guidance.
It would be very disappointing if the disagreement about Alzheimer's drugs distracts attention from the excellent NICE dementia care guideline—which we trust clinicians and commissioners will implement as quickly as possible. We also hope that the restriction on drugs will not detract from progress made by clinicians in diagnosing dementia.
The sole driver for our campaigning is our vision for a world where people with dementia have their rights recognised, where they can contribute to family and community life, and where they can live with dignity, free from discrimination. A world where they and those who care for them have their needs fully met.
That vision is why we published, earlier this year, the first definitive report on the impact of dementia on the UK (Dementia UK report, 2007). Now our politicians and policy makers are beginning to understand just how many people there are in the UK with dementia; how much it costs our nation; how the numbers and costs are going to increase; and the personal cost and strain on hundreds of thousands of individuals and families.
Those policy makers are recognising the health and social care challenge presented by dementia. In recently announcing the development of a national dementia strategy, government health minister Ivan Lewis made clear the size of the challenge and also the role of the Alzheimer's Society in raising the profile of dementia. We intend to play a big part in the development of that national strategy and driving forward the interests of people affected by dementia.
This is the time to ramp up our efforts to deliver the “transformation plan” the government has committed to. That plan must cover awareness of dementia, quality of care, and, critically, early diagnosis. We have an ambitious programme, if anyone would like to join our fight against dementia I would be delighted to hear from them.