Alzheimer's Drug Treatment not available on the NHS
Comments
-
Do you know someone affected by Alzheimer’s?
Dementia was the leading cause of death in 2022 and has been the leading cause of death for women since 2011. In England and Wales, dementia accounted for 11.4% of all deaths in 2022.
(from the committee papers)
0 -
I think we need to remember that often they will put "can cause death" as a way of covering their backs. Currently there's no firm evidence that it does cause death, but I do agree, it needs more testing, or for them to lower the price point for it so the NHS could actually afford it.
1 -
@Albus_Scope you have made a very good point. Every single item that we consume or swallow may have an adverse reaction. Just today a 13 year old girl was on the news after having a fatal reaction to soya milk that had what was labelled as soya milk, but she was not given dairy free. There is risk to some people in everything.
0 -
Do you know someone affected by Alzheimer’s?
Pleased to see you posting again @older01 - I do think that to leave in the phrase that @Littlefatfriend has used is both inaccurate & misleading, both things which are mentioned in the community's House rules as content that is not allowed.
Both the medical paper about the Lecanemab drug trial:
https://www.nejm.org/doi/full/10.1056/NEJMoa2212948 & NICE's comments about this included in a 201p appraisal (the relevant part being from p100):
totally refute that suggestion.
If Scope doesn't allow inaccurate content, then surely this should be edited out, please, especially considering any other member who later reads this post. Nobody other than Littlefatfriend & the charity who were trying to explain this drug trial in laymen's terms (& reported on this aspect incorrectly):
has mentioned this. However, by 'they' (I presume you mean medical professionals & NICE), said there was no evidence, surely that should suffice @Albus_Scope
0 -
I've found this article from Aug 16 2024, which says there have been two known deaths which they attribute to reactions to the medication in question causing ARIA-E, but those are such low numbers.
I'm sad that they've said it wont be available to people on the NHS due to the price tag, but I'm reall hoping in future years, the NHS may be able to afford it, it could be life changing to so many people.
1 -
Do you know someone affected by Alzheimer’s?
I'd be interested to see a link to that @Albus_Scope - Lecanemab was only approved by the MHRA on 22 Aug 2024. Interestingly a comment that I just made on the page I linked to above with Alzheimer's Research UK's website, appeared quickly after moderation, but has since disappeared!
0 -
One second @chiarieds I'd just closed the tab after an hour of having it up. 😆
0 -
Do you know someone affected by Alzheimer’s?
Yes, it's very unpleasant to read and Thalidomide has nothing whatsoever to do with this trial. There's a risk of death crossing the road. There's a risk of adverse reaction to any drug. But on the whole, this is brilliant news for anyone at known risk of developing dementia because it's not only elderly people who do!
1 -
Ah hah, here it is!
https://www.alzforum.org/news/conference-coverage/two-new-deaths-leqembi-highlight-need-better-manage-aria#:~:text=In%20clinical%20trials%2C%20lecanemab%20triggered,news%3B%20Jan%202024%20news).0 -
Do you agree with the NHS?
One of the most complicating factors of testing drugs like this is the risk of ill-health amongst members of both test and control groups, and drawing absolute connections between cause and effect therein. Health risks invariably need to be established to be happening consistently before vast amounts of money and research can be justified in order to establish the biological cause and effect involved.
What Lecanemab does in some people is worsen pre-existing issues. It may make things considerably worse.
Whilst it remains at this very early stage of testing and understanding all they can do is "link" deaths to the trials.
That's my point entirely. It's just too early and it's likely that further testing will enable scientists to improve it.
There are many reliable sources available to check what I've written about deaths in these trials:
1:
2
3
On side effects and risks:
1
2
3
There are too many reliable reviews of this research to include them all here. It's got great potential but it isn't ready yet.
I apologise if I caused any offence or upset mentioning thalidomide, I only did so because that is an example of a drug where research wasn't given enough time. That's the link.
Good luck all
Luke
1 -
Do you agree with the NHS?
https://www.drugs.com/sfx/lecanemab-side-effects.html
0 -
Do you know someone affected by Alzheimer’s?
Appreciated, thanks.
Trials under this new licence to slow a degenerative condition which carries the certainty of death with or without treatment may not feel like a huge gamble for sufferers and their families.
Isolating any cure for even a few sufferers at this stage is tremendous progress. Thanks to everyone for this discussion and the links.
1 -
Do you know someone affected by Alzheimer’s?
Thank you @Albus_Scope - I presumed this didn't relate to the clinical trial & it's evaluation by NICE due to the date you gave. Lecanemab was approved by the USA's FDA in early 2023, to which this article relates, which records the unfortunate deaths of 2 people who were (homozygous) carriers of the ApoEε4 gene & relates to the open label phase (OLE). i.e. following being a participant in the randomized trial.
I hope we can be reassured by the MHRA saying testing for this gene should be carried out as, if a patient has 2 copies of this gene (i.e. is homozygous), the benefit of Lecanemab is uncertain, & Lecanemab isn't licensed in such instances :
I did mention this indirectly saying the NHS wanted genetic screening to exclude some of those who are carriers of this gene (those who are homozygous). I think all is being done to rightly put safety paramount. Unfortunately, as mentioned, this may down the line exclude many of those with Alzheimer's from being eligible to try Lecanemab.
@Littlefatfriend - I did find the medical paper to your 1st link, which relates to the link Albus posted (from the USA).
Your 2nd link reiterates MHRA's decision to exclude those who carry 2 copies of the ApoEε4 gene, i.e. those who are homozygous for this gene.
Your 3rd link I believe also relates to that Albus posted as this patient was also an ApoEε4 homozygote (again in the USA).
Don't get me wrong, with my genetic problems I've learnt more from some USA neurosurgeons & geneticists, etc. than any Drs here in the UK, but I thought we were discussing the use of Lecanemab here in the UK, & the rest of your links, including a duplication, are all from the USA on a similar theme.
You say, 'One of the most complicating factors of testing drugs like this is the risk of ill-health amongst members of both test and control groups…..' Well, the only ill health in any control group, i.e. those receiving a placebo, is that they may have benefitted from the drug being trialled surely?
The info from the USA is cautionary; Aria-E can mimic a stroke, & if normally used clot busting drugs are used, the result can be catastrophic to a patient who has been on anti-amyloid therapy, tho cerebral amyloid angiopathy (CAA), which occurs in many Alzheimer's sufferers, perhaps should also be considered, as this can cause cerebral haemorrhages with such stroke treatment even in the absence of anti-amyloid therapy. So, perhaps the jury is out on that one.
Overall it seems the MHRA have been more cautious in their licence than the FDA, & NICE are also asking the drug company & NHS England to address their uncertainties.
0 -
Do you agree with the NHS?
Hi Chiarieds
Members of a control group will be selected from people similar (in terms of age, health, gender etc) to the test group who are in need of treatment for dementia.
Therefore they will be at relatively high risk of illness compared to the general population.
How could a member of a control group benefit from not being given a drug which was being tested on other people?
0 -
Do you know someone affected by Alzheimer’s?
@Littlefatfriend - I believe that's what I said,
'Well, the only ill health in any control group, i.e. those receiving a placebo, is that they may have benefitted from the drug being trialled surely?'
Tho you're questioning the possible use of this specific drug here on the NHS despite the MHRA's stringent criteria, which I wholly endorse.
0 -
Do you agree with the NHS?
Sorry Chiarieds
Ill health in members of a control group would only suggest they had acquired/developed an illness as a result of a variable external to the experiment, as they weren't given any treatment.
The aim of the experiment is only to explore the benefits of taking the drug.
The control group couldn't have benefitted from that drug, as they weren't given any of it.
Additional ill-health as a result of recognised side-effects of Lecanemab can only make things worse for those who suffer it.
Here's to further study
0 -
Do you know someone affected by Alzheimer’s?
Just an update - my comment remains 'disappeared' on Alzheimer's Research UK's website, where I'd said,
‘No deaths were considered attributable to Lecanemab in the clinical trial, & a view that NICE didn’t seem to disagree with, so where does this info about 3 deaths attributable to Lecanemab come from, or has this comment been in error?'
However I was pleasantly surprised to get an email reply wherein I was told I was correct, but that there had been 4 deaths possibly attributed to Lecanemab in an extension of the original clinical trial [OLE]. However they kindly apologised for the confusion, & said they've subsequently updated the info on their website.
I am still concerned about their wording, as they don't make it clear that these deaths occurred in the extension trial, & it doesn't quite follow that this is likely why the MHRA therefore excluded those that carry a potential risk due to their genetic predisposition, being on medications, etc., as I've previously mentioned……info should surely clearly relate to the possible use of Lecanemab in this country, & hopefully not put someone in the early stages of Alzheimer's off from benefitting some day?
Here's a link which they gave to the OLE:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11084061/
I do try to look at both sides of things; there's obviously a conflict of interest where a drug company (Esai) is promoting their own drug; also a conflict of interest can be seen in the medical paper above by USA clinicians where some receive funding/are employees of Esai.
All this has to be borne in mind whilst also acknowledging that so far the benefits are only known to be moderate, & may not last for long.
Anyway, I will get back to Alzheimer's Research UK, as they did kindly said I might.
0
Categories
- All Categories
- 14.2K Start here and say hello!
- 6.8K Coffee lounge
- 69 Games den
- 1.6K People power
- 101 Community noticeboard
- 22K Talk about life
- 5K Everyday life
- 58 Current affairs
- 2.2K Families and carers
- 824 Education and skills
- 1.8K Work
- 438 Money and bills
- 3.4K Housing and independent living
- 895 Transport and travel
- 659 Relationships
- 64 Sex and intimacy
- 1.4K Mental health and wellbeing
- 2.3K Talk about your impairment
- 845 Rare, invisible, and undiagnosed conditions
- 893 Neurological impairments and pain
- 1.9K Cerebral Palsy Network
- 1.2K Autism and neurodiversity
- 35.8K Talk about your benefits
- 5.6K Employment and Support Allowance (ESA)
- 18.5K PIP, DLA, and AA
- 6.6K Universal Credit (UC)
- 5.1K Benefits and income