Alzheimer's victory: After three-year campaign by the Mail, sufferers will finally get vital £2.50 drugs banned by NICE
Hundreds of thousands of people in the early stages of Alzheimer’s will no longer be denied crucial drugs that slow the devastating disease.
A three-year campaign by the Daily Mail ended in victory yesterday when the NHS drug rationing body reversed a ban that had been universally condemned by doctors, patients and their families.
Patients diagnosed with Alzheimer’s - who knew they were losing their minds - faced the scandalous situation of waiting for their condition to deteriorate before being prescribed the three drugs.
'It's wonderful': Alzheimer's sufferer Derek Quinn, pictured with wife Teresa, said he will 'now be able to do something positive'. Read his full story below
Aricept, Exelon and Reminyl cost only £2.50 a day, but the National Institute for Health and Clinical Excellence ruled in 2007 that they can be used only by patients in moderate - not early - stages of the disease.
This prompted a legal challenge partly funded by £230,000 raised in one week by Mail readers, which forced NICE to reveal its calculations behind banning the drugs.
Now the rationing body has succumbed to pressure and issued new draft guidelines which will allow doctors to prescribe the treatments to patients with mild symptoms.
The U-turn also means the drug Ebixa can be prescribed for the first time to severely ill patients. This will save thousands from taking antipsychotic medication – dubbed the ‘chemical cosh’ – which is not proven to work and can cause dangerous side-effects such as strokes.
The Mail campaigned vigorously with the Alzheimer’s Society, and with the help of physicians and celebrities, to end the scandal which affected some of the most vulnerable in our society.
Although the drugs are not a cure, up to half of patients respond with ‘life-changing’ improvements. Their symptoms are lessened and the progression to dementia is slowed, trials have proven.
Research also shows that those who begin the drug treatment at a later stage never catch up with those who began earlier, suggesting prompt intervention leads to an improved long-term prognosis.
Nice previously claimed the NHS could not afford to offer drugs to all eligible patients, but has now carried out a review using a different computer model to assess their cost-effectiveness.
This time it concludes the benefits are worthwhile, when compared with full-time care which can cost up to £40,000 a year.
The change in policy could be confirmed early next year in England and Wales, where the ban applies.
The potential cost to the NHS is unclear because thousands of patients could now ask for re-assessment, to add to the newly diagnosed.
At present the NHS spends around £100million a year on anti-dementia drugs. A Government estimate says using Aricept for mild disease would add only £5.7million next year. It says this would be offset by delays in patients needing long-term care.
And the drug will lose its patent in 2012 which means the price will fall as cheaper generics are supplied to the NHS.
Professor Clive Ballard, director of research at the Alzheimer’s Society, said doctors had faced an ethical dilemma for the past three years: Knowing there was treatment available that they were banned from prescribing.
He said: ‘If this guidance is issued, doctors will no longer have to watch people deteriorate without being able to treat them.’
Professor Ballard is convinced some doctors had been reluctant to diagnose the disease because of the restrictions, while patients might also have delayed seeking help.
He paid tribute to the Mail readers who raised £230,000 towards the court battle, which failed to overturn the ban but forced Nice to disclose key information.
Thanking Mail readers, Ruth Sutherland, interim chief executive of the Alzheimer’s Society, said: ‘In 2007 thousands of people supported our campaign to get access to Alzheimer’s drugs. We would like to say thank you to each and every one of these people for their support.
‘People with dementia tell us that taking the drug treatments can be like a fog lifting.
For the price of a cup of coffee these drugs can help many people continue to play with their grandchildren or recognise their loved ones. You can’t put a value on these benefits.’ Gordon Wilcock, professor of clinical geratology at Oxford University, said ‘common sense’ had prevailed and NHS patients would at last get help – not just those who could afford a private prescription.
Nice’s chief executive, Sir Andrew Dillon, said: ‘Our increased confidence in the benefits and costs associated with the use of the three drugs for treating mild and moderate stages of the disease has enabled us to make a positive recommendation for their use in mild disease.’
Drugs that 'lift the fog'
Fewer than one in ten Alzheimer’s patients are prescribed anti-dementia drugs to treat their symptoms, yet clinical trials clearly show the benefits of early treatment.
Aricept, Exelon and Reminyl compensate for low levels of a key chemical in the brain.
They stop breakdown of the enzyme acetylcholinerase, which plays a crucial role in memory and helps nerve cells communicate.
When they work the drugs ‘lift the fog’ for patients who remember names, or how to make a cup of tea, with effects lasting up to two years on average. Aricept, which costs £75 a month, is the most popular.
Another, Ebixa, at £69 a month, has never before been recommended for routine use on the NHS. It is the first in a new class of drugs which appear to have a protective effect, by blocking a messenger chemical that increases damage to brain cells.
A long-term study found Ebixa restored the ability, for at least a year, of severely ill patients to do routine daily activities and feel more alert.
In the U.S. and France, clinicians routinely combine a drug such as Aricept with Ebixa to get maximum protection for patients.
The 63-year-old chartered surveyor was diagnosed with early onset Alzheimer’s in 2000 and was prescribed the drug before Nice changed its guidance.
His wife and carer Mary, 67, said: ‘He was going downhill fast, but Aricept returned things almost to normal. It gave us four to five years of normal life, in which we managed to do things together which we knew we wouldn’t be able to do later.’
Mr Stevenson, from Ambleside, Cumbria, was even able to give away three of his daughters at their weddings. Sadly, his condition has since deteriorated and he is now needs full-time care in a residential home.
This is the news we have waited so long for
When Derek Quinn, 69, pictured earlier, was diagnosed with Alzheimer’s two years ago, he was told there were no drugs to help.
He was in the early stages of the disease when, under the old NHS guidelines, drugs were banned until his condition worsened.
He sought help after suffering memory lapses working at the wood recycling company where he was co-director.
‘I found I couldn’t recognise customers I’d been serving just a week before,’ he said.
His wife Teresa, 66, says they both felt let down by the NHS after months of worry.
She said: ‘We went to the memory clinic where the diagnosis was confirmed but the doctors said they couldn’t prescribe anything at this stage. It was quite a blow to be told there was nothing they could do. It took a lot of getting used to.
‘Derek wanted to take Aricept and they turned him down, and he tried again a few months later. The doctors said they would have to make a special case and so we accepted he wasn’t going to get it.’
The couple, who have six children and live in Calne, Wiltshire, will now ask again for Aricept.
Mrs Quinn said: ‘It’s great that we’ll get the chance. We appreciate it might not work but Derek would like the opportunity to try it.’
Mr Quinn said: ‘It’s wonderful that I might now be able to do something positive.’
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