N.I.C.E. report conclusion this morning

[Lynne]

"Ban lifted on dementia drugs" - but only for those who have already sunk far enough to have developed 'Moderate Symptoms' - can we expect a definitive definition?


Key drugs for people with moderate dementia will continue to be available on the NHS under revised plans unveiled by the treatment watchdog.

The National Institute for Health and Clinical Excellence (NICE) provoked uproar in March last year when it published draft guidance which stated that drug treatments for Alzheimer's were not cost-effective enough to be available on the NHS.

The announcement reveals its Appraisal Committee is now recommending three drugs should be "considered as options in the treatment of people with Alzheimer's disease of moderate severity only".

The news prompted a mixed reaction from drug companies and Alzheimer's support groups, the latter expressing relief at the withdrawal of the "blanket ban", but with concerns it could see treatments denied to people in the early and late stages of dementia.

Andrew Dillon, NICE Chief Executive and Executive Lead for the appraisal, said: "We are acutely aware of our responsibility to help people with Alzheimer's disease secure access to effective treatment. We needed to make the right decision, based on all the relevant evidence.

"By going the extra mile and asking the drug companies to delve deeper into their clinical trial data, we have been able to identify the right way to use these medicines.

"People with Alzheimer's will now receive these drugs when they can help them most.

"Patients and those who care for them will be able to feel more confident about gaining benefit from them and the NHS will know that it is using its funds to best effect."

Last year's draft guidance was widely condemned and NICE received an unprecedented response from doctors and campaigners calling for a rethink of its conclusions.

In the draft, NICE accepted that donepezil, rivastigmine, galantamine and memantine - known as cholinesterase inhibitors - were effective in alleviating the symptoms of Alzheimer's, but were not cost-effective for NHS use.

Source: AOL News Service

 

[zed]

It is absolutely crazy. NICE are saying that the drugs should be prescribed in the middle stages of the illness, and not at the early stages. This makes no sense at all as the drugs are more effective when taken at the early stages. What kind of people would say it is a good idea to prescribe a drug when the disease has already advanced. These drugs can often help people retain their independence and personality for longer, by slowing down the progression of the disease for a year or two.

 

[May]

I heard the news today with absolute dismay and horror, where do N.I.C.E (if ever there was an inappropriate title, that's it!) think we are going to get a definitive diagnosis from of 'moderate severity'. In my own experience getting a diagnosis in the first place is difficult enough and as we all know each case is SO different and even presents symptoms differently. So how do NICE think that they can decide which cases will benefit when all they have is data from clinical trials to go on? I'm going to have to go and read the report and let off steam on the NICE web site....but when I've calmed down and am coherent. The final thing today that made me growl was a 'Professor' (I won't use the name) on Radio 4 news during my journey home. He was so arrogant and obnoxious and appeared to be saying that the AS was in cahoots with the drug companies, and it was tough but there was no money for these drugs and that was that! Wow!...go for the solar plexus why don't you, needless to say I had a satisfying shout at the radio about his arrogance etc,etc..........

 

[Dearth]

May - check in the " Raising awareness and campaigning" section - loads of stuff re: this there!

Regards.



N.

 

[Lynne]

Still Furious.

Written Monday 23/1/06

Thanks for that Neil, I am collecting together facts from a variety of sources and will copy & paste your contribution into it. It is my intention then to cherry-pick from the collection (not quoting directly, as that might infringe copyrights) and put together a letter of my own - WHEN I HAVE COOLED DOWN.

RIGHT NOW, I just feel like jumping on someone's head, stamping my feet up & down, shouting, screaming, cursing, swearing, crying, and sheer bloody murder.

What rights or qualifications do the members of this bloody Quango have (& who the hell thought of calling it NICE!) to say that over 70,000 people per year (& their families) must wait & watch AD rot their faculties to the point where they can no longer function on their own or have a reasonable quality of life, and only THEN they can have the available medication to hold them at that level of existence & delay further deterioration for a few years. We don't say to cancer sufferers "well, once the condition has become inoperable you can have some painkillers to see you through the rest of it"!

For God's sake, It doesn't even make sense economically. Surely someone can see that it is cheaper to give 'holding' medications at an earlier stage, enabling them to stay in their own homes with a reasonable level of FREE support from their family members, rather than have them going into residential care sooner, (because they can't be left safely unsupervised) and then requiring it for longer.

Does my Mum have to attack the milkman because she thinks he's an intruder? Does she have to get on the wrong bus and end up lost, perhaps to be mugged in a strange place? Or perhaps after she's drunk bleach instead of lemonade, THEN she can have the medication to slow down her mental deterioration!

Sorry everybody, I'll stop now - I have to, I can't see the keyboard for tears of rage.

 

[barraf]

N.i.c.e

What has annoyed me most about this fiasco is the fact that yesterday I received through the post a 63 page account of their decision and why they had reached it. This was sent to me because I had expressed interest in their provisional report.

If everyone who wrote to them has received the same, the amount spent on preparing the letters plus paper and post must have cost enough to pay for tne medicaton of half the AD sufferers for a year.

Quite apart from all that I couldn't understand most of it anyway.

Talk about jobs for the boys.

Barraf

 

[Robert]

Hello, Lynne, Barraf and others who have posted on this thread,

I've just looked at NICE guidance No 19 on the web, dated Jan 2001, which recommends donepezal, galantamine and rivastigmine should be made available in the NHS as one part of the management of some people, with mild to moderate Alzheimer's.

Now 5 years later (within the same 63 pages that Barraf referred to in his post) NICE are recommendig the above medications, as options in the treatment of people with Alzheimer's moderate severity only. Until final guideance is issued (expected to be published in July 2006) guidence No. 19 continues to apply.

So having recommended those drugs in 2001, what has changed between then and now? 5 years on I doubt the £2.5 per day cost has changed much, why are they considering moving the goal posts? Could it be assumed NICE screwed up somewhere along the line? Of course, it may be suspected there is a political motive involved. After all, removing access to the drugs through the NHS, would hardly be seen as a vote winner. But then again, it has been well publicized that the NHS costs are spiraling out of control, so something has to be done.

Ah yes, that must be it - A COMPROMISE IS CALLED FOR - just recommend the drugs for sufferers half way into the disease, that should save a few billion quid and a gong for the bloke who thought of that

I should state I have no political affiliations and the above is just my personal view, of the gastly situation we carers and sufferers are facied with, while waiting for NICE to pronounce sentence.

Final thoughts - I wonder how much the NICE deliberations over the years have cost, we'll never know of course.

NICE - a misnomer if ever there was one.

Best wishes to all,

Robert

 

[connie]

Robert, just adding my own personel thoughts to this debate:

Had Lionel been diagnosed today, he would be denied the drugs. However it has taken him 4 years to decend to the level of the MMT to reach the score acceptable for the drugs to be prescribed.

Life is not good today, but 3 of the last 4 years have been a blessing. I just do not understand, and am a bit tired now of campaigning.. However if I, and others , do not proceed where will we all be in the future. Take care of yourselves, Connie

 

[zan]

Don't know if I've missed it but what definition have the ( not so) NICE people given for mild, moderate and severe AD. Does it go by the memory test score or just on a doctors own discretion? Zan

 

[Robert]

Hello Connie,

Just like to add my hope that the changes for you and Lionel work out for you both.

For some unfathomable reason NICE seem determined to limit the supply of Dementia drugs. Saying they are not cost effective, I think is pathetic. In March last year I wrote to NICE and my MP to complain about NICE's recommendations.

NICE say any further comments on the current recommendations must be received by 13 Feb 06. I feel we are battleing against a brick wall, but having come this far I shall write again - it will likely be the last opportunity.

I may be cynical, but I can't help thinking their political masters will also contemplate the pro's and con's of maybe losing a few million votes.

Take care,

Robert

 

[Robert]

Hello Zan,

While trying to make sence out of NICE's 63 pages of bumph, I did note that moderate severity only is defined as someone having an MMSE of between 10 and 20 points.

Best wishes,

Robert.

 

[anna76]

Madness!!


I agree totally with the above sentiments.
Would you say to a depressed patient, "yes we have a treatment for your illness, and it proven to be highly effective, but you'll have to come back when you're suicidal before I can prescribe it to you"??

Quality of life is everything. If we wait until the deterioration reaches the levels suggested, sorry..recommended by NICE (huh! I don't think!), the quality of life may not be worth preserving as much as it would have been in the few years previously.

Start being nice, NICE!! It could be you one day.......

 

[connie]

Anna, welcome to TP. Totally agree with your post. Hope this forum helps you, and I am sure you will make new friends as you go along. It is one of the positives to have come from our loved ones suffering, we have joined a large family, and very nice they are too. Connie

 

[Lynne]

Today is 15th February. Does anyone know when 'NICE' is to issue its edict on Aricept and other AD medications, having said they would consider our submissions received by 13th February?

To be thoroughly cynical (which is how I feel) I suppose we have to wait until some "Celebrity" goes public with a dementia story before any sort of humane treatment can be expected.