Campaigners Suf Fer Alzheimer's Setback

Aug 11, 06:10 PM

Current Headlines: By Jenny Hope, Sam Greenhill

CAMPAIGNERS have lost their battle to make the Health Service pay for drugs for early-stage Alzheimer's patients.

The High Court ruled that the health rationing watchdog will not have to reinstate provision for those with 'mild' symptoms.

Mrs Justice Dobbs said the National Institute for Health and Clinical Excellence had not acted unfairly and irrationally in formulating its guidance to health trusts.

NICE will, however, have to rewrite advice that could have discriminated against some sufferers.

Campaigners said patients will now effectively have to prove their dementia has worsened before qualifying for free treatment.

Doctors said the decision means Alzheimer's sufferers in England will continue to receive the worst treatment in Western Europe.

Each year, up to 100,000 are denied funding for three drugs which cost just 2.50 a day and can slow the decline into dementia.

The court challenge from the Alzheimer's Society, funded by Daily Mail readers, followed a record 11,000 protests from sufferers, carers and doctors. It was the first time NICE guidance has been the subject of judicial review.

The drugs ban was brought in last year in England and Wales even though the drugs - Aricept, Exelon and Reminyl - remain freely available in Scotland.

NICE says they are not cost-effective in the early stages of the disease and patients must develop 'moderate' symptoms before receiving free prescriptions.

Eisai, the Japanese company which makes Aricept, and Pfizer which distributes the drug in Britain, were also represented at the case, which was heard over four days in June.

NICE was accused of acting 'irrationally and unlawfully' and of producing a 'flawed' decision. The Alzheimer's Society said the benefits of the drugs for carers of those with mild symptoms were ignored.

Savings made by enabling sufferers to stay in their own homes for longer were hugely underestimated, it said.

In her ruling yesterday, Mrs Justice Dobbs said she recognised drugs WILL WE might help but that it was not for her to decide whether they should be made available on the NHS.

She ruled that NICE was wrong to use a mental scoring system alone to determine a patient's state. Those with learning disabilities or for whom English is a second language could lose out, she said.

Neil Hunt, of the Alzheimer's Society, said: 'We have won the very important point that NICE guidance is unlawful because it discriminated against significant groups of people.

'However, the result is 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 WE EVER setback 2.50 a day, the cost of the drug denied to many Alzheimer's patients 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?' The judge rejected applications to appeal, meaning the Alzheimer's Society and drugs companies must now decide whether to petition the Court of Appeal directly.

The judge ordered NICE to pay 40 per cent of the drugs companies' costs in addition to its own, leaving it with a likely bill of 540,000.

At the court to hear the judgment was chartered surveyor John Stevenson, 67, who was diagnosed with Alzheimer's seven years ago and for whom Aricept prescriptions have made a huge difference.

His wife Mary said: 'There was an immediate difference when John started taking Aricept. He'd remember things better and wasn't as frustrated.

Since then, Aricept has given us so much and allowed him to run his business for a further two years. I'm so angry that other people won't get the chance we had.' The couple, who live in Ambleside, Cumbria, have five children and, over the past seven years, Mr Stevenson has been well enough to give away three of his daughters at their weddings and make speeches at the receptions.

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