Alzheimer's Drug Treatment not available on the NHS

older01

This is not something that affects me personally ‘yet’, but I am very concerned that the NHS has not had the elderly at the forefront of their care for a long time. I do think it sad that they have said that they will not be funding the new drug treatment for Alzheimer’s patients due the cost involved.
Quoting - it is only of some benefit. Another quote being that there are other drugs in the pipeline that may be used in 5-10 years time. Unless people can afford the £40,000 per year to fund the treatment themselves (unlikely for most), they will not be given the drug. It made me think of the many patients that would find this drug beneficial now. Those patients do not have the luxury of time on their side.

chiarieds

Do you know someone affected by Alzheimer’s?

One of my lovely neighbours is now severely affected by Alzheimer's, & it's been awful to see the progression; even worse, if that's possible, is the effect it's having on her husband of many years, as it's now severely affecting his health. He's unable to even get any respite care for her locally (& one place further away isn't a possibility as it's not secure & she could easily wander off).

It seems the main problem with this drug Lecanemab, is cost, tho its NICE that is saying so:

https://www.nice.org.uk/news/articles/benefits-of-new-alzheimer-s-treatment-lecanemab-are-too-small-to-justify-the-cost-to-the-nhs

older01

@chiarieds Sadly the cost of any kind of drug is expensive. I think that the cost shouldn’t come into it as a reason for not approving it. I could think of many drugs for various ailments that cost far more. It’s the ethics that matters. If it has improved someone’s quality of life or prevented the progression of an illness, costing is not something that should be considered. It does seem like the older generation does get a poorer quality of care within the NHS. They need to wake up to the numbers that are affected by this debilitating disease, and as you say - the people that care for them.

Littlefatfriend

Do you agree with the NHS?

There are various such drugs in testing around now but these things take a vast amount of research and there are problematic side-effects which deserve working out.

Another issue is that they require catching it at an early stage.

I'm not convinced it's ready yet and the miracle cures advertised are just that at this stage, advertising.

Good luck all

chiarieds

Do you know someone affected by Alzheimer’s?

I agree somewhat with both of you @older01 & @Littlefatfriend - there are apparently potentially serious side effects to Lecanemab NICE say, & it so far only seems to be identified as slowing progression in the early stage of Alzheimer's. However, I think anyone having a partner or family member suffering from this would welcome just having the person they know for those precious few months longer.

I don't always agree with what NICE say - they got it wrong for quite some time as to their 'guidance' about ME/CFS & how GET (Graded Exercise Therapy) they thought would help, which it was later shown it didn't, for example.

However, the cost of treatment does have to be taken into account, as far as Lecanemab goes, as there aren't infinite funds, unfortunately. More research is needed, as is the case too with many disorders. There is however no price you could put on someone having an improved QOL even for a short time, & clinical trials have presumably shown that Lecanemab was effective in a significant number of those with Alzheimer's, so it's more than being just 'advertising,' & I don't think it has been intimated that this drug 'cures.' Hopefully more will be known in the future.

older01

I would ask anyone where do you start ? @chiareds and @Littlefatfriend I would hope that people do start at the earliest stages of any disease once it’s diagnosed because that’s where we introduce drug therapy for any illness. If it’s not effective it would not have been licensed at all, would be my argument with NICE. It may not be the perfect cure as such, but Alzheimer’s has been around in this country, and the numbers diagnosed are increasing, and there has been no drug that has been used to slow the onset to date. Without giving patients access, how can we possibly measure the benefits?
Sadly the rise in the number of people being diagnosed with Alzheimer’s is rising year on year, and the NHS must consider how they are going to fund patients care regardless. The NHS must better prepare themselves to care for the individuals affected by this cruel disease.

WhatThe

Do you know someone affected by Alzheimer’s?

Hi, I found this on Alzheimer's Research UK - Lecanemab is only suitable for people in the earliest stages of Alzheimer’s who have a formal diagnosis.

Will lecanemab ever be available on the NHS?

Today’s decision from NICE is provisional, and only covers England and Wales. In the coming months, further negotiations between NICE, the NHS and lecanemab’s manufacturer, will take place – something which Evans-Newton said, “may offer a way forward.”

“But the heartbreaking reality is that those who could benefit from drugs like lecanemab don’t have time to wait,” she warned.

A separate decision for Scotland will be made by the Scottish Medicines Consortium (SMC). An outcome is not expected until 2025.

In a letter to the new Health Secretary, Alzheimer’s Research UK called for him to find a solution so that people with dementia in the UK don’t continue to miss out on innovative treatments.

As well as considering how to make drugs like lecanemab available, experts called for a focus on improving the way dementia is diagnosed within the NHS. Concerns have previously been raised about the NHS’s ability to deliver lecanemab, in particular because of the way people are diagnosed. This was highlighted in the BBC’s Panorama earlier this year – Alzheimer’s: A Turning Point?

Lecanemab is only suitable for people in the earliest stages of Alzheimer’s who have a formal diagnosis. Just weeks ago the NHS revealed that dementia diagnosis rates in England were at a record high, although still below the national target of 66.7%. However, one in three people living with dementia in England never get a diagnosis, and those who do can wait up to a year.

What’s next for dementia research?

Looking further ahead, experts pointed to the need to focus research efforts on developing treatments that tackle multiple different aspects of Alzheimer’s disease.

“There are now more than 160 trials underway testing over 125 experimental treatments for Alzheimer’s across the globe, including 30 in late-stage trials. Despite today’s frustrating news, it really is a matter of when, not if, new treatments become available,” said Evans-Newton.

• Read our lecanemab explainer
• If you have questions about lecanemab, want to know more about dementia research or about how you and your loved ones can get involved in studies, our Dementia Research Infoline can help. You can call us on 0300 111 5 111 (9.00-5.00pm Monday to Friday – excluding bank holidays) or email infoline@alzheimersresearchuk.org.

older01

@WhatThe Firstly can I thank you for your research. It highlights exactly my point that the NHS has not considered those awaiting diagnosis or are in the early stages of Alzheimer’s. I am greatly saddened that NHS England in particular is failing the older generation in such dramatic fashion.

The drug has been shown to be of benefit to people with early onset of dementia, which is where they should be focusing their efforts. It is the same as any other disease. We should remember that Alzheimer’s not only robs people of their ability to think clearly or remember certain things - it is the beginning of the end. The cost of caring for individuals with Alzheimer’s and dementia long term is far greater than the cost of treatment.

WhatThe

Do you know someone affected by Alzheimer’s?

Hello again, I treated myself to the weekend i newspaper - page 25 includes an interview with a patient who enrolled 8 years ago in the trials for Lecanemab, who continues to receive infusions. Sorry I can't reproduce the page for you but perhaps someone else can.

This breakthrough drug will be developed under license in further trials and perhaps slow down progression of the disease and benefit those volunteers at least.

older01

@Littlefatfriend The only reason behind the NHS not being prepared to fund the drug is the cost. It has passed clinical trials and is out in the community for those who have the luxury of self funding. It does not last forever, however it is of enormous benefit to those who are newly diagnosed with Alzheimer’s. It is effective in actually killing one or the enzymes that quicken the onset of the disease. Now, NICE - the funding side of the NHS say that the drug is too expensive. Perhaps there is hope for anyone unfortunate enough to be diagnosed in several years from now, but the patients who are newly diagnosed today with this terminal disease of the brain have no hope, and neither do their relatives unless they are in the privileged position to be able to self fund the drug which is not a cure, but it does slow down the progression of the disease.
The term side effects has not been used to my knowledge in relation to this particular drug.

older01

@WhatThe Hello again! I saw a lady patient on the news who was receiving the treatment several years on from the start of the drug treatment. I think that it was quite remarkable that although she does have problems with her short term memory now, she maintains her cheerful spirit and has full long term memory retention.

Surely others must have seen this and thought to themselves that this really is by far the most highly advanced drug treatment that has been proven to be beneficial to anyone who is in the early onset stages of Alzheimer’s? Typical that NICE only see £ signs rather than actual patients 🤔❤️

Littlefatfriend

Do you agree with the NHS?

Thank you Older One, you detail the greatest issue.
Accurate diagnosis.
That requires all sorts of very experienced and expensive staff.
That's precisely where the solution should start.
If I ever read anything in the I Newspaper I would check its factuality.
Please give me details of that report and I'll happily tear it to pieces.
"Other side effects:
These include dizziness, headache, visual changes, worsening confusion, swelling or bleeding in the brain, and brain shrinkage. In rare cases, lecanemab can cause death."
I emphasise please "can cause death".
Like thalidomide it's messing about with things that we have insufficient research to predict.

Littlefatfriend

Do you agree with the NHS?

You misquote both the NHS and NICE.

That's nothing they've said.

older01

@Littlefatfriend For whatever reason your @Littlefatfriend didn’t highlight that you were tagged, so my apologies for my first attempt!

I agree entirely with your point that the NHS is woefully ill prepared for today’s and future diagnostic tests. They seriously do need to wake up to today’s society, and the huge numbers that are already diagnosed, so the ones that haven’t yet been, but could well be diagnosed before any form of treatment is available in the NHS. This is going to cost immeasurable amounts of money to care for, and probably house most individuals in the care sector. This is incredulous that the NHS are always warning us about today’s ageing population, yet they are not prepared for this themselves wouldn’t you agree? I do worry for myself in future years. I have no knowledge of my family history. I live alone, so I could end up a statistic, along with anyone of us. Who knows what the future holds?

Littlefatfriend

Do you agree with the NHS?

No expense is immeasurable, what works best is investment in constructive things.
In my opinion the greatest difference which could be made is investment in the social care which could help empty hospital wards.
I don't agree.
I also live alone (with two cats). Why is that relevant please?
None of us knows what the future holds.
Thanks

older01

@Littlefatfriend I don’t know how you could be so insensitive to the suffering of others when you must have a disability of your own that you are most likely being treated for in some form, and even been on medication for something. The idea behind the NHS is preventative rather than responsive healthcare. Many common terminal illnesses from yesteryear, we now have vaccinations for these days thanks to forward thinking. Every day medicines are advancing. Today children can be vaccinated against such a wide range of diseases that would have been potentially fatal to them once upon a time.

Social care is the Cinderella of the services, and it is still largely unregulated. There is very little training required, and much money to be gained by certain individuals that can legally open and operate a care home for the elderly. People are required to pay a portion of their social care. The Cap on what individuals pay towards their care has now been lifted. This is a scary prospect for the vulnerable and elderly today. Of course, nobody would want to be on a hospital ward unnecessarily. My point about living alone is simply that you or I, or indeed anyone who lives alone and becomes dependent on the social system will get the treatment depending on finances alone rather than what is necessarily in our best interest. We may get Alzheimer’s for example and not be aware of the dangers that we could potentially face when putting the cooker on and forgetting about it being on. Many people die every year without anyone even noticing for months until someone reports a bad smell coming from the house simply through neglect.
I don’t know about you, but I don’t want this to be me in the future. Since the outbreak of Covid, much has been learned about the plight of people living in social care homes. I do not want to see our society forgetting why the NHS was founded less than a century ago. It was founded so that we could all access free healthcare when we need it. I will emphasise the word ALL not worrying about being a burden on society. The NHS has changed in recent times post Covid. This is not the health service that we were born into. Sadly, as we age we will find ourselves more reliant on the NHS and healthcare providers of tomorrow.
This is not something that should be a two tier system where people are categorised dependent on finances alone.

chiarieds

Do you know someone affected by Alzheimer’s?

It's a very difficult situation @older01 - Lecanemab is the first drug that has been shown to slow down the progression of Alzheimer's (tho only as yet understood to do so for a relatively short period of time); some Alzheimer's patients wouldn't be able to receive this drug due to having a gene which could predispose them to adverse effects from taking this, others would be excluded due to having some pre-existing conditions.

NICE also say that, as the trial of this was only for 18 months, then the long-term effects of taking Levanemab are unknown. That's a valid point, but, as I've mentioned above, the Quality of life (QOL) that a person might have for that little bit longer would be so important. However, as progression of Alzheimer's varies from person to person, & a decrease in the severity of Alzheimer's affects a sufferer's longevity in a positive way, that does have to be taken into account for safety's sake.

The drug company also made some assumptions, which clinical experts disagreed with, & were asked for more clarity. Then there are the almost 'unseen costs,' as any potential patients would need to have a lumbar puncture or PET scan to determine whether they had an increase in amyloid plaques (which this drug targets), however it was agreed that 28.8% wouldn't have these, so would be ineligible to try Lecanemab.

Please don't get me wrong; this is the first drug that offers hope by targeting the cause, rather than just the symptoms in some of those with Alzheimer's, yet more needs to be known.

I do think we have to be wary as to where we get our info from, &, perhaps read what it says. WhatThe wasn't quite correct, as the patient mentioned was actually diagnosed 8 years ago but has been receiving treatment for 4 years. I checked this, as the medical paper published about Lecanemab was only in late 2022:

https://www.nejm.org/doi/full/10.1056/NEJMoa2212948

Littlefatfriend

Do you agree with the NHS?

You seem to both object and agree with my perspective Older1:

Again "Other side effects:
These include dizziness, headache, visual changes, worsening confusion, swelling or bleeding in the brain, and brain shrinkage. In rare cases, lecanemab can cause death."
Each of which will make the experience of Parkinson's considerably worse for the individual.

lt's not ready yet, it's got potential but at this stage there are all sorts of established side-effects (including death) which would be an easy target for litigation.
The NHS would have to risk spending huge amounts on treatment and then far more on compensation.

Medicines evolve through research and that's precisely what they're doing.
Thalidomide was once considered beneficial.

Effective medical care from the ground up is the best investment societies may make.
Prevention is the aim of the NHS but decades of underinvestment have made that impossible.

Social care was a key part of what separated us from the apes.
Unfortunately economics and the fact we haven't been replacing ourselves in this country for decades necessitates our hiring carers from elsewhere.
I'm always pleased to meet my carers of African origin.

I argue both that the skills required of carers are far more detailed than you suggest and that it's also a hugely demanding job at an emotional level.
I pay more than half of my care costs.
That's why I'm paid PIP.

Neither the NHS nor NICE have said these drugs won't be paid for because they're too expensive.

They aren't yet safe.
That's their point.

There are various such drugs in testing around now but these things take a vast amount of research and there are problematic side-effects which deserve working out.

The greatest issue is that these conditions require catching at an early stage.

Good luck

older01

All that I can say about the comments that people have left is that hopefully I have made people reflect on the present situation that some less fortunate people in society are facing.
I hope that no one in this group ever faces an illness or disease that comes down to either cost effectiveness or the obvious lack of awareness or investment into their health. I wish everyone well, and I do not wish to get personal with anyone or make anyone feel attacked as some comments seem to have attacked me personally for posing the question.

I still feel strongly that anyone who has a place in the group should not feel above others. Thank you for your support and point of view to all.

WhatThe

Do you know someone affected by Alzheimer’s?

🤗 it's a great post and I'm sorry I can't post the article about one brave soul who volunteered for this drug trial 4 years ago - he LIVED to tell the tale and the NHS continues to fund his treatment. There will be plenty of other willing volunteers for trials who will benefit.

Did you hear how Liz Truss thought withdrawing NHS funding for cancer treatment was a good idea?

Thanks for posting.

chiarieds

Do you know someone affected by Alzheimer’s?

Thank you for raising awareness about Lecanemab @older01 - your post got me to look at this further, & I'm still reading & learning more! Yes, as WhatThe says, those enrolled on the trials will continue to have their treatment funded until they/their healthcare professionals think it appropriate to stop here in the UK. This was a global study (with 8 UK sites involved), with some 729 patients completing the 18 month study in the Lecanemab group.

Deaths occurred in both those receiving Lecanemab & the placebo group, 0.7% & 0.8% respectively; no deaths were considered attributable to Lecanemab. The main problems in the Lecanemab group were mainly mild-moderate infusion-related reactions (which improved after the 1st infusion in 75%), & just less than 7% withdrew from the study due to this or another symptomatic adverse event.

For reference please see the link I gave above:

https://www.nejm.org/doi/full/10.1056/NEJMoa2212948

About deaths during the clinical trials, NICE also say these were not attributable to Lecanemab. It seems unfortunately that Alzheimer's Research UK wrongly reported on this, & I don't know if this happened elsewhere. Please see p100 in the following link for confirmation:

https://www.nice.org.uk/guidance/GID-TA11220/documents/committee-papers

Imaging abnormalities were higher in those that were carriers of the ApoE ε4 gene, & it seems the NHS would want genetic screening to be done to exclude some of those who are carriers of this gene from eligibility, as some of these had experienced micro & macro cerebral haemorrhages, for example, in the clinical trials.

NICE also say, 'Although there are uncertainties with the cost effective estimates, all of the cost -effectiveness estimates seen by the commitee are considerably above what NICE considers an acceptable use of NHS resources. So, lecanemab cannot be recommended for routine use.'

Please see:

https://www.nice.org.uk/consultations/2701/3/recommendations

So cost is definitely an issue as things stand; safety is being looked into further, but it looks like at least a third of Alzheimer's sufferers wouldn't be eligible to try this if it becomes available for use in the NHS due to not having amyloid pathology (the External Assessment Group thought that this may be as high as 40+% of patients), some comorbidities & some being ApoE ε4 carriers.