NICE's U-turn lets Alzheimer's drugs be used by NHS?

Lecter

As the thread title to suggest, what are your opinions on this issue and what are the fundamentals issues regarding this U-turn; DoH/NICE trying to save money or something else?

(This is only a draft guideline on Alzheimer’s drugs being prescribed to new patients who reach a moderate stage of the condition.)

This is my opinion;

"….outcry last March when NICE suggested that all four drugs should not be funded by the NHS because they were not cost-effective."

So drugs companies, doctors and careers what this policy turned around. As a prospective doctor, our number 1 aim is to improve the quality of lives of people, in this case those people suffering this terrible disease Alzheimer’s. Finance should not come into play (those of us who feel the Hippocratic Oath or its modern equivalent still stands true.). However in the modern NHS, unfortunately with deficits (last year £620 million and the current PFI debacle with the government) the guys in the DoH and NICE have to make such decisions, I mean people with Alzheimer are going to die sooner rather than later, without such drugs as acetylcholine inhibitors the Alzheimer’s patients quickly advance to the later stages.

The DoH or NICE haven’t said that PCTs can’t provide residential care. Importantly, it’s the distress of relatives who are nearly always the first line carers with their Alzheimer’s effected relatives and with an ever increasing aging population there is doubling of prevalence rates for every five-year increase in age over 60, so the cost of care/drugs is going to increase anyway.

From a personal point of view, I volunteer in a home for elderly mentally infirm residents. It just feels that the residents are waiting to die and they seem helpless, they are provided with the best care by the ladies working there as they do there best to make them feel comfortable. It just feels they should be at home with there relatives caring for them in more familiar surrounding and maybe with the advent of modern drugs that have reduced toxicity and more effective, it can stop the next generation predisposed to Alzheimer’s from suffering alone.

"NICE says that making the drugs available to people in the moderate stages of Alzheimer's will still benefit about 40% of those with the condition."

So on one hand we can give these drugs in all stages (which are what Campaigners what in the end) OR these drugs given in the moderate stages as scientific trials have proven with recommendations from pharmaceutical companies. The latter referring to what NICE say is cost effective and clinically most effective in the suffers but from further reading, the new GP contract is supposed to encourage doctors to diagnose dementia cases early on pushed for early Alzheimer detection and treatment so again another contradiction in government policy. Giving Alzheimer drugs freely would result in slower progression of the disease so these people may spend longer with their family but in the end, the symptoms progress so they end up in residential homes. So simply these drugs are keeping them alive longer so rather than the cost of residential care, the government have to pay the cost of this care plus drugs to slow this progression!

((I hope I make sense, and I apologise in advance if I am completely incorrect but this is what I have understood, and please correct me if I am wrong.))

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Another question, when does the health white-paper come out? Thanks.

Reply 1

Fluffy

From what I understand it's not just an issue of cost effectiveness.

These drugs are most effective in the more distressing later stages of the disease, and tolerence develops to them [hearsay to me, but from a reputable source!], so if you use them too soon, then you have nothing effective left in your arsenal when the disease becomes more nasty.

However, you then have the totally valid and normal patient and family view of I would rather have 'more' when I can potentially enjoy it and get the most out of it...

I think deciding suitability of a patient for a drug should be the role of the doctor, not of a civil servant... and putting a cap of £2.50 a day on each patient IS cruel... A patient is a patient, not a RRP!

I think part of this is a response to the 'Herceptin Culture', where do you draw the line between a persons Human Right to treatment and keeping a failing NHS afloat?

There's a 'similar' issue in Parkinson's Disease with L-Dopa preparations. If you use them too early then the patient develops tolerance and the symptoms return, often more severe than they were and with horrifically debilitating effects as the drugs abilty to act wears off ['on-off' syndrome etc.]. However, L-Dopa is relatively cheap as chips, so NICE do not get involved...

Reply 2

Lecter

Fluffy

From what I understand it's not just an issue of cost effectiveness.

These drugs are most effective in the more distressing later stages of the disease, and tolerance develops to them [hearsay to me, but from a reputable source!], so if you use them too soon, then you have nothing effective left in your arsenal when the disease becomes nastier.

Yes I have read this also (somewhere in my pile of interview stuff to read), a while ago during my early interview preparation as I did mention in my personal statement I am doing my voluntary work in a residential home where the patients mostly suffer from degenerative brain disorders such as dementia or specifically Alzheimer’s (from what I understand, dementia includes a group of diseases/disorders that effect the brain and have similar outward behaviour symptoms, anger or confusion or incontinence).

A quick google…..link to a study of tolerance to anticholinesterase/ cholinesterase inhibitor drugs in AD.

However, you then have the totally valid and normal patient and family view of I would rather have 'more' when I can potentially enjoy it and get the most out of it...

Then again this is selfish of relatives’ in-light of what you say in your post about increased drug tolerance. Understandably relatives’ and the patient will have 'more' time when they can potentially enjoy it and get the most out of it but when the patient further deteriorates and the disease, by this time the AD patient is shipped off to the residential home so the relatives’ don’t have to worry about it, just the carers who may have an awful experience as well as the patient. (There is this lady in the residential home I volunteer in and some days she is fine, she’s very intelligent and we try to have a conversation in French as she is quite fluent, conversely some days she can give hell, and I was there one day when she would try and break out the place via the fire doors as they cant be locked properly and she nearly hit me with a brick and nearly slapped me!)

I think deciding suitability of a patient for a drug should be the role of the doctor, not of a civil servant... and putting a cap of £2.50 a day on each patient IS cruel... A patient is a patient, not a RRP!

I was reading some stuff that the “NICE dementia guideline development group (GDG)” wrote in response to NICEs initial blanket ban of these drugs, that when the doctors prescribes these drugs, they are tailored for the individual so if the patient is not suitable, they are readily withdrawn. £2.50 is nothing compared to what other government departments waste e.g. it costs $600000 for a cruise missile!

I think part of this is a response to the 'Herceptin Culture', where do you draw the line between a persons Human Right to treatment and keeping a failing NHS afloat?

There's a 'similar' issue in Parkinson's Disease with L-Dopa preparations. If you use them too early then the patient develops tolerance and the symptoms return, often more severe than they were and with horrifically debilitating effects as the drugs ability to act wears off ['on-off' syndrome etc.]. However, L-Dopa is relatively cheap as chips, so NICE do not get involved...

But as a doctor we don’t and shouldn’t make that call s we aren’t politicians or hospital managers etc. They need to get their thumbs out of there asses and do something as all these half-soaked laws etc are just about gaining votes in the next general election. So its nothing to do with the drug doesn’t work, then why don’t NICE say that tolerance may develop? I suppose the media always try and put a spin on things e.g. Herceptin. Also, the pharmaceutical companies are to blame her as they want a push to drop the blanket ban, why don’t they tell the public or whoever about the tolerenace, on the other hand, its not profitable is it!

Again sorry if i am rambling on or speaking rubbish.

NICE's U-turn lets Alzheimer's drugs be used by NHS?

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