• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Drugs

JohnA

Registered User
Jun 8, 2006
2
Hello Everyone

I'm doing some research on the accessibility of drugs for people with AD and dementia and I would be grateful for any help. In view of NICE's recommendation for restricting drugs such as Ebixa and the current campaigns to get these drugs on the NHS, which may take a long time, would the families and friends be willing to pay the cost of treatments for their loved ones at the cost of say £912 per year or £2.50 per day? Also has anyone any experience of where charitable organisations have donated to pay for drugs for patients with AD?

Many thanks for your help!

John
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Yes, I would willingly pay for any effective drugs, but would expect our doctor still to monitor their effect, and change to a different one if necessary.

Fortunately, Mum was formally diagnosed with Alzheimer's Disease last Wednesday, and the consultant doctor gave her a prescription for Aricept right away.

However, one never knows what N.I.C.E. will decree next, so my answer is Yes, I would pay if the NHS failed in their duty of care.
 
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Michael E

Registered User
Apr 14, 2005
619
Ronda Spain
It's a little off tread but here in France you only get 60% of the cost of drugs paid for by the social security EXEPT with illnesses of long duration like AD they pay 100%.
Michael
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I thought it was £2 50p per tablet? 2 tablets have to be taken a day so that make it £ 5 a day?

I was told yesterday by the area manger of our AZ group that when the memory score go below 10 with AZ that Ebixa is only given as part of a clinical trial.



My mother when in respite when doctor tested her memories told me she scored a 5, my mother is not incontinent & still go to AZ day centre no who I am , & can interact with us , my mother has been on Ebixa for 3 years & my mother is not on a trial , can you imagine if they stop my mother medication her death is sealed they are condemning her to her death . What? Why? Just because she old & had her life. When they have a medication that can give her more time .

In Chelsea / Kensington more patents was given Exbixa compared to fulham/ Hammersmith which only 90 people on Exbixa In hammersmoth/ fulham

AD has a negative view when it goes past the moderate stages on the population , so NICE our playing on that, they don’t want to promote Exbixa as its not cost effect to the shareholder pockets.

What I would like to know how do they decide who going on the trail, ? those that have more money I bet like in Chelsea / Kensington .......how long does a trail last before they allow it on the NHS?

Is NICE an English company? , because Exbixa is a USA made drug for AD & you can get it on the NHS in Gibraltar & Spain. is NICE an English 3 world company? When it come to medication for people who have AD?

What was your mother score Lynn ?

JohnA Yes if I was force to …… but why should we My mother/ father have paid Tax NI, for 55 years in England ,So I would campaign on her behalf & future generation of British people .
 
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Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Margarita said:
Is NICE an English company? , because Exbixa is a USA made drug for AD & you can get it on the NHS in Gibraltar & Spain. is NICE an English 3 world company? When it come to medication for people who have AD?
NICE isn't a company at all. The National Institute for Clinical Excellence is supposed to be an 'advisory body' to the Ministry of Health. I suspect many of them are accountants rather than medical professionals, as they seem less concerned with improving healthcare than they are with saving money - OUR money, as you said Margarita - which we have all paid into over many years.


Margarita said:
What was your mother score Lynne ?
20

Thanks for your interest & caring (very well used word here, that 'caring'!)
 
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Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,246
66
Toronto, Canada
In Canada Ebixa is still only conditionally approved. The Ontario provincial drug plan for seniors does not cover it at all nor does it cover other AD drugs once the MMSE score falls below 10. My mother now pays roughly £165 per month for 2 drugs. Fortunately, she has a private drug plan which reimburses 80%, but yes, we would pay it if we had to. The Ebixa has certainly made a difference for her. She's now declining again but that's AD.
 

JohnA

Registered User
Jun 8, 2006
2
Hi Nada

Im trying to find out the opinions of carers and families of those with AD on whether they would be happy to cover the cost of drugs that are not available on the NHS. The research is for my own personal use. I posted in the section which applied to carers and issues etc, which I thought was best place. I really wanted to know the opinions of the carers/families rather than academics/scientists.

Thanks

John
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hi Johna
my wife was diagnosed with AD before Aricept was available on the NHS.
We paid somewhere in the region of £140 per month until they became available on the NHS.
That was from a pharmacist friend,some pharmacies were more expensive.
You ask would carers and families of AD sufferers be happy to pay.
I think happy is a bad choice of word but when the health of a loved one is at stake what choice is there?
I am glad that I am not a member of NICE,how do they sleep at night? Or is the financial reward that good enough to compensate?
Norman:mad:
 

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