The health authority that advises the government on which drugs should be available under the National Health Service (NHS) in England and Wales has announced a reversal of a 2007 restriction that prevented hundreds of thousands of people with Alzheimer’s disease from getting life-changing drugs on the NHS.
After a vigorous campaign by charities and people caring for those with Alzheimer’s, the National Institute for Health and Clinical Excellence (NICE) announced on Thursday its draft decision that the Alzheimer’s drugs, which cost £2.80 per patient per day, are cost effective and should be available by prescription.
There are over 450,000 people living with Alzheimer’s in the UK, where over 60,000 people are diagnosed with the disease every year.
Ruth Sutherland, Interim Chief Executive of the UK’s Alzheimer’s Society told the press that they welcomed the decision, and that this was “a momentous day for thousands of people with Alzheimer’s and their carers”.
She said the three drugs, Aricept (donepezil) , Exelon (rivastigmine) and Reminyl (galantamine), improve patients’ quality of life at all stages of the condition. If the draft decision is upheld, they would be available on the NHS for people in the early and moderate stages of Alzheimer’s; until now they have only been available on the NHS for people in the moderate stages.
“While they don’t work for everyone, small but important benefits can enable many people to recognise their loved ones for longer, play with their grandchildren or make vital plans for the future,” said Sutherland.
A fourth drug, Ebixa (memantine), is also included in the revised decision, which if upheld, would allow people in the moderate to late stages of Alzheimer’s also to get it on the NHS.
While not all patients benefit, some who already use the drugs say the difference they make is like a “fog lifting”. They can remember things like how to make a cup of tea or how to get home from the shops, or the names of their friends and grandchildren.
57-year old Alzheimer’s patient, Ann Johnson takes Reminyl. She told the Alzheimer’s Society that the drug has made a huge difference to her life and she is delighted it will now help lots of other people.
“Without these drugs I would be a shadow of the person I am today,” said Johnson, who said before she started taking the drugs she knew what she wanted to say but couldn’t find the right words. She said it was terrifying, she lost her self-esteem and would “dread getting lost”.
“Now I’m able to live life to the full. You can’t put a price on that, it’s immeasurable,” said Johnson.
Chris Hill, a retired geography teacher who lives near Cambridge told the Guardian that his 60-year-old wife Angela, who used to be a teacher, experienced significant improvement for months after taking Aricept. She is now in a care home because the symptoms are so severe.
Hill said the drug doesn’t prolong life but “it masks the symptoms”, and more of the personality is retained.
“They are more of the person that they were for longer, and for a relative or a carer — a wife, husband, son or daughter — that’s massive, because Alzheimer’s pulls on your heartstrings, because you witness the decline of your loved one”, he said.
Professor Clive Ballard, a leading specialist in old age psychiatry and Director of Research at the Alzheimer’s Society’s said in a statement that if the NICE draft decision is upheld, “doctors will no longer have to watch people deteriorate without being able to treat them.”
He also made the point that being able to prescribe Alzheimer’s drugs that are in the best interest of the patient will motivate practitioners to diagnose the disease earlier.
“Early diagnosis and intervention means better choice and control in the support and care available,” he added.
This latest decision was based on a different model for assessing cost-effectiveness than the one NICE used three years ago.
The authority’s chief executive, Sir Andrew Dillon told the press that the authority felt able to change its position because it had more “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”, reported the Guardian newspaper.
It is also thought that new evidence about the drugs’ ability to delay the time at which patients may have to go into care homes also contributed to the new decision.
However, the NICE decision is not yet final, it is a draft decision. The next stage is a public consultation, for which the authority has invited comments by the 28 October, and then there is a second meeting of the Appraisal Committee on 25 November.
Sutherland said the Alzheimer’s Society will now turn its attention to campaigning for more people to have access to the treatments from today.
Sources: Alzheimer’s Society, Guardian.
Written by: Catharine Paddock, PhD