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Alzheimers...this is how the press association is reporting the story. What's YOUR experience?

Eddie Mair | 17:21 UK time, Friday, 10 August 2007

Campaigners battling for Alzheimer's sufferers to have access to anti-dementia
drugs on the NHS in the early stages of the disease suffered a High Court blow
today.
Although a judge ordered the Government's medicines watchdog to amend
"discriminatory" guidance on drug treatment for Alzheimer's, the ruling did
not pave the way for funding for all patients with "mild" symptoms.
Drugs companies, supported by the Alzheimer's Society, won a partial victory in
the first ever challenge of its kind to a decision by the National Institute for
Health and Clinical Excellence (Nice), which is responsible for providing
national guidance on treatments available on the NHS.
Mrs Justice Dobbs, sitting in London, ruled that Nice should rewrite its
guidance on how the severity of the disease is assessed.
Eisai, the Japanese company which makes Aricept, one of the drugs at the centre
of the case, and Pfizer, which distributes it in Britain, had accused Nice of
acting "irrationally and unlawfully" and argued that its decision was
"procedurally flawed".
But the judge allowed their challenge on only one out of six grounds - that the
test to assess Alzheimer's is discriminatory to people with learning
difficulties or those who speak English as a second language.
Campaigners say that amended guidance will greatly improve the position of
"thousands of patients who would otherwise have been denied equal and fair
access to treatment because they could not pass a single, rigid test of how far
their disease had progressed".
Mrs Justice Dobbs announced: "In the light of the court's finding that the
guidance is discriminatory, the court directs Nice to amend the guidance so as
to ensure its compliance with Nice's duties and obligations under
anti-discrimination legislation."
Alzheimer's Society chief executive Neil Hunt said patients would now have
"much fairer access to Alzheimer's drug treatments".
However, he added: "But the ruling still falls short of ensuring that everyone
with Alzheimer's disease can have access to the drugs.
"There will still be some mild stage patients who are refused because Nice
considers that these drugs are too expensive."
Last year Nice, backed by an appeal panel, decided that three acetyl
cholinesterase inhibitors (AChEIs) - Aricept, Reminyl and Exelon - should no
longer be made available on the NHS in the early stages of Alzheimer's. It
recommended use of the drugs for "moderate" Alzheimer's, but not for mild
cases.
It decided that the drugs, which cost about #2.50 per person a day, were not
cost effective in relation to the benefits they offered to such sufferers and
their carers.
The watchdog, which described the drugs as having "only a small clinical
effect", said its decision-making processes were "open, transparent and
fair".
After today's judgment Nice chief executive Andrew Dillon said: "This ruling
strengthens Nice by endorsing our approach to evaluating drugs.
"Our guidance stands and the drugs continue to be recommended only for people
with moderate Alzheimer's disease, but the court has asked us to clarify our
guidance when it is used for certain groups.
"It was always our intention that people with learning disabilities or people
whose first language is not English should have equal access to the drugs in the
moderate stage of Alzheimer's disease.
"We will reissue our guidance to the NHS to make this crystal clear."
He said: "Alzheimer's disease is a devastating illness, but the evidence
indicates that these drugs are simply not effective for some patients.
"That is why we also issued advice last year on the broader support that
should be provided for people with Alzheimer's disease and those who care for
them, creating core standards for the NHS and care homes that will make a real
difference for patients and their families."
Professor Sir Michael Rawlins, chairman of Nice, said: "I do not regard this
as win or lose, but in five out of six points the judge has concluded that our
procedures are fair and rational and that is important for us, having been
tested in court."

Comments

  1. At 05:40 PM on 10 Aug 2007, Hazel Leventhal wrote:

    My sister has had Alzheimer's for 12 years which started when she was in her early 50s. I was her main carer for the first 8 years and battled to get her on Aricept which she started about 4 years after diagnosis - exactly the time NICE recommend. However her consultant knew that putting her on medication much earlier would have been far more beneficial as once someone has deteriorated they have already lost the ability to do many things. If given at an earlier stage the effects may not appear to be so dramatic but keep people at a higher level of functioning for longer - which may be the real reason for NICE not allowing it in the early stages because people would then have to be on it for a longer time. Their idea of cost effectiveness is so unrealistic because people will have to receive expensive care much sooner. Where can you get a care home costing £2.50 a day? The NICE decision was flawed and inhumane and must be overturned at some point. If this disease affected much younger people I'm sure the drugs would be approved on diagnosis. The NHS wastes billions of pounds on anti-depressants, which are often ill-tolerated and not always effective, and other drugs which are prescribed but not taken. I used to work as a GPs receptionist and know the huge wastage. Restricting dementia drugs is costing this country vast amounts in human misery and in care costs. Other countries & Scotland let their sufferers have these drugs - are they all wrong about them being effective in the early stages and only NICE right? I think not.

  2. At 05:45 PM on 10 Aug 2007, Frances O wrote:

    Eric, how did you find time to post such a mega-frog in the middle of the programme?

  3. At 05:50 PM on 10 Aug 2007, Eddie Mair wrote:

    Copy and paste Frances (2) - copy and paste!

  4. At 05:54 PM on 10 Aug 2007, Frances O wrote:

    Oh, you clever man.

    Are you, in fact, copied and pasted before the programme, thus allowing you time to copy and paste during it?

  5. At 06:00 PM on 10 Aug 2007, Dr David Lee wrote:

    AChEIs such as Aricept have been shown to reduce the rate of progression of Alzheimer's disease. Community caregivers have been shown to reduce the cost of care for dementia patients to the NHS to the tune of some £5.4 Bn (National Audit Office, 2007; Knapp et al., 2007). Advanced dementia and its associated behavioural impacts on caregivers (such as sleep disturbances, incontinence, wandering etc..) causes the breakdown of community-based care and precipitates institutionalisation (thus costing the NHS and so the taxpayer).
    Research is lacking on the cost effectiveness of AChEIs in early stage Alzheimer's and is arguably essential, but so is examining support for community caregivers. It may well be the case that providing these drugs in the early stages will prolong community caregiving, keeping families together for longer and reducing the (huge) state borne cost of care. This is particularly prescient with our ageing population; as age is THE main risk factor for developing dementia, which currently costs the NHS an estimated minimum of £3.3 Bn per annum, and this figure is possibly as much as £14.3 Bn pa (National Audit Office, 2007)

  6. At 09:43 PM on 10 Aug 2007, RJD wrote:

    Eddie - We need another more interesting thread as the lead. This one is attracting no posts at all!

  7. At 10:59 PM on 10 Aug 2007, Chris wrote:

    I for one am very pleased that the High Court upheld the NICE decision because

    1. If the drug company had won NICE would spend most of its time and resources in legal fees rather than assessing drugs as every decision that went against a drugs company or special interest group would be challenged.

    2. As far as I understand it the case was funded by the drug company who I suspect was more concerned about the loss of potential profits resulting from not getting their drug approved for early stage use than anything else. After all in practical terms this decision by NICE virtually prevents them making profits in the UK from early stage sufferers. The drug companies are big PLC's who primary purpose is to make profits for the shareholders and investors.

    I have every sympathy for suffers of this dreadful disease but I am more inciined to believe the independent view of NICE than the drugs company manufacturing the drug.

  8. At 01:18 AM on 11 Aug 2007, jonnie wrote:

    Re; RJD

    I think it is possibly because of the way that Eddie has posted the long (copied and pasted) PA text! - most people will have scrolled down - and clicked away!

    It doesn't make easy reading

    +++++++++++++++++++++++++++

    Please Please -

    if you want to hear a brilliant example of WHY this is such an important story then spend a few seconds on the link I've spent time on providing

    It's from Fridays Jeremy Vine show on Radio two.

    Jeremy speaks to a guest who has Alzheimers and has been on Reminyl -

    It's 35 minutes in from this link! I am not allowed to download it - but just click ahead to 30 minutes and listen to it.

    http://tinyurl.com/2ntj5o

    I'm in no way criticising Eddie and the team's coverage on the topic - however like RJD I'm surprised there has not been more response on such a worthy thread - and encourage you to listen to this brave man on Radio two.

    Then listen to the professor's response -and her responses and leave a comment!

    Although there is no Alzheimers in my family I have seen many guests at the Hotel and how it's starting to become a growing problem in society.

  9. At 01:58 AM on 11 Aug 2007, jonnie wrote:

    Hazel Leventhal #1

    Watch this thread - I hope Eddie leaves it here for a while as the main one, it deserves it!

    I'm sure you will get many people in support of your viewpoint!

    I for one am!

    Only around £2-50 a day for the drug! -- simply an outrage!

  10. At 09:47 AM on 11 Aug 2007, Anne P. wrote:

    Chris (7) I think at least part of this argument hinges on the way in which NICE evaluates the economic benefits of a drug. Do you only take into account whether it keeps the person economically productive i.e. in work, or do you take into account the costs to family and community of a more rapid deterioration in the person's heath - see Dr David Lee at (5).

    Similar issues have arisen in relation to a new drug for macular degeneration where it appears that local health authorities have taken decisions not to allow the drug even though in some cases a person who is going blind is the sole carer for a partner - the net result will be two people in care at a cost to the state as a whole much sooner than would otherwise have been necessary.

    One reason for this kind of situation is the lack of a joined up approach which means one part of the system funds the drug (or not) and another pays for the care.

    Which brings me back to how NICE does its evaluation. I think if the true costs were taken into account then even a year's delay in what at present is an inevitable decline makes economic and above all humanitarian sense.

  11. At 12:28 PM on 11 Aug 2007, mac wrote:

    my best friend (now so sadly a victim too) was tending his mother at a very late stage.

    She suddenly said

    'Has Keynes been refuted or has he just gone out of fashion?'

    It was '87, mid - Thatcher.


    Startled, he said how much that was on the then (and now!!!) button.

    'Oh', said the old lady ' you know, in here, we've just got dementia, we're not stupid you know, nor suddenly become so!'

  12. At 01:24 PM on 13 Aug 2007, Roberto Carlos Alvarez-Galloso,CPUR wrote:

    This is attracting me since my great uncle suffered from Alzheimer and Vascular Dementia. He was a restaurant owner in New York until he retired in the 1970's. Everything went downhill for him. My Great Aunt [his wife] suffered from Alzheimers Dementia as well and both died in appalling circumstances in 1991 at the age of 90. The appalling circumstances was a Nursing Home in Connecticut in America. I have not recovered from the way they died.

  13. At 01:49 PM on 13 Aug 2007, Fifi wrote:

    Speaking as one who had a Grandfather with Alzheimers, and more recently a Grandmother with dementia, I can say that it is the carers and immediate family who bear the consequences of holding off any possible treatment.

    The earlier, the better. Unless of course you think that letting people die sooner is an acceptable use of resources in the longer term.

    Bitter? me?

    Fifi

  14. At 01:54 PM on 13 Aug 2007, Fifi wrote:

    Appeal for your help, froggers!

    I am working on an anniversary project (among other things I'm a publisher) for the PM Blog.

    Please, those of you who love the Frog, and who know Fifi enough to trust me, can you please send an email via the weblink attached to my name above, and I'll tell you more!

    No obligation, and your privacy (as always) is guaranteed.

    Look forward to hearing from you ... including lots who have dropped off the radar.

    ;o) Fifi

  15. At 02:13 PM on 13 Aug 2007, FMcD wrote:

    My mother, who died earlier this year, suffered from Alzheimer's for the last 6 or 7 years of her life.

    The biggest difficulty we faced was in getting her diagnosed in the first place. By the time the disease was formally diagnosed, she was already too far gone to have received much benefit from this form of treatment.

    Perhaps if she had been diagnosed and treated earlier, she could have been saved the horror of those years of constant anxiety during which she knew something was wrong with her, but wasn't sure what. We could have been saved from the pain of watching our mother disappearing in front of our eyes, leaving a fragile shell of a woman behind. The NHS might have saved the cost of 3 prolonged hospital stays during the last year of my mother's life, and Social Services might have saved the cost of the 'care' home that showed an almost complete lack of care for her in her last few weeks of life.

  16. At 04:52 PM on 13 Aug 2007, Piper wrote:

    Below is the first 2 paragraphs of an article released by the U.S. University of Rochester, Medical School

    If this approach works in humans, we may see a marketable treatment available in a couple of years.

    Fingers crossed for the treatment AND, the funding...

    www.urmc.rochester.edu/pr/news/story.cfm?id=1618

    "Monday, August 13, 2007
    Draining Away Brain’s Toxic Protein to Stop Alzheimer’s

    Scientists are trying a plumber’s approach to rid the brain of the amyloid buildup that plagues Alzheimer’s patients: Simply drain the toxic protein away.

    That’s the method outlined in a paper published online August 12 by Nature Medicine. Scientists from the University of Rochester Medical Center show how the body’s natural way of ridding the body of the substance is flawed in people with the disease. Then the team demonstrated an experimental method in mice to fix the process, dramatically reducing the levels of the toxic protein in the brain and halting symptoms. The team is now working on developing a version of the protein that could be tested in people with the disease.

    The approach doesn’t take direct aim at the pathology that is ubiquitous in the Alzheimer’s patients’ brains, where amyloid-beta forms a toxic plaque. Instead, researchers take an indirect approach, focusing not on the brain but rather on a protein that sops up amyloid-beta in the body, where it’s regarded as harmless. The scientists found that if they increase the body’s ability to soak up amyloid, the brain responds, causing levels of the substance in the brain – the real target – to plummet..."

  17. At 06:24 PM on 13 Aug 2007, Fifi wrote:

    Isn't that intersting, Piper!

    Thanks for sharing.

    Fifi xx

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