Donanemab in Early Symptomatic Alzheimer Disease

[nitram]

Trial of Donanemab in Early Symptomatic Alzheimer Disease

This randomized clinical trial examines the efficacy and adverse effects of donanemab, a monoclonal antibody designed to clear brain amyloid plaque, among patients with early symptomatic Alzheimer disease.

jamanetwork.com

 

[Gosling]

This was just featured on the BBC six o'clock news as their main headline. Sounds very positive if used in early onset disease. It's all very encouraging and hopeful

 

[Jaded'n'faded]

I am completely cynical.

1) There is no/very little early diagnosis and very few PET scanners in this country so if you don't live near one, tough.

2) It's going to cost at least 20K per year per person and that's just the cost of the drug. Add on the cost of the hospital transfusion visits to administer it every few weeks and the necessary frequent scans to make sure it hasn't caused a bleed on the brain or brain swelling. So I doubt it will get approval though I'm sure some people will be able to get it privately.

3) I don't find the claim that it can slow the progress of cognitive decline - in the early stages only - by up to 30% all that encouraging.

4) It won't help people with vascular or other types of dementia.

5) I think (and this is only my personal opinion) there are major ethical questions over whether we should actually prolong the time a person has dementia. Because this drug only slows progression of Alzheimer's at first. Eventually... well, we all know what happens.

I could go on. I won't.

 

[Dunroamin]

Good post @Jaded'n'faded . As a PWD I for one do not wish to prolong my time

 

[SeaSwallow]

Good post @Jaded'n'faded . As a PWD I for one do not wish to prolong my time

It’s good to have input from someone with dementia.

 

[nitram]

Some previous discussion
https://forum.alzheimers.org.uk/threads/donanemab.138770/#post-1950881 .

 

[Louise7]

Here's a link to the BBC news article which includes comments from someone on the drugs trial and their family:

Drug donanemab seen as turning point in dementia fight

The antibody treatment donanemab slows clinical decline by around a third, a large trial confirms.

www.bbc.co.uk

 

[Gosling]

Here's a link to the BBC news article which includes comments from someone on the drugs trial and their family:

Drug donanemab seen as turning point in dementia fight

The antibody treatment donanemab slows clinical decline by around a third, a large trial confirms.

www.bbc.co.uk

The gentleman on the trial drug sounded very hopeful and even satisfied that the drug had slowed down his decline at least. But the article did cover the possible side effects which are certainly quite devastating too.

 

[Neveradullday!]

It seems to me, the real hope for the future would be to prevent Alzheimer's in the first place.
We're told it isn't a natural consequence of aging - let's hope that's true. Can it be prevented by good diet, sufficient deep sleep etc. - maybe.

 

[Lawson58]

The possible side effects of the drug sound nasty and there have been deaths from using it.

And I would like to know why some people responded well but the majority didn’t.

 

[Chizz]

Hi @Jaded'n'faded
I agree with you.
We (the country) needs more PET scanners. I believe they cost about £2.5m each. We all know the NHS has no money. So, little hope of more scanners any time soon.
We all know that there is a waiting list of about 1 yr (more or less depending on where in the country you are) for a diagnosis appointment, and so what are the chances of a diagnosis in early stages, or is a diagnosis in the first 2 years early enough?
From posts on this forum nearly all the carers say that when they've had a formal diagnosis confirmed for their PWD "ah, but it really started at least 2 years ago", so quite often a formal diagnosis is more than 2 years down the road. Is that early enough? If not, then there are even fewer people the new med might help.
If the new med works without serious side effects, then that's great for the family concerned; save that as Alz's before causing death lasts between 3 and 12 years, does it mean the PWD now may live with Alz's for 4 to 16 years - 30% longer? What's the costs of caring for the extra years when the med becomes ineffective in middle or later stages? Costs caring is, of course, not just money but emotional as well.
I can't see NICE agreeing to the costs as presently stated out of NHS budget. So it is likely, when available (some years away yet) it will only be for the private sector who could afford it.
Great news, but these are my reservations.

 

[Grannie G]

I believe Fiona Philips is making a documentary charting her experiences with the trial drug.

 

[Chizz]

My newspaper this morning says that the nationwide average waiting time for a dementia diagnosis is 2 years; and for those under 65yrs average waiting time for diagnosis is 4 yrs! As most people don't even seek a diagnosis until matters become reasonably evident, which may be about 1 to 2 yrs, it means earliest official confirmation may be between 4 yrs and 6yrs into dementia, which I assume is past early early stages where new drug might help! It also says nationwide there are 88 PET scanners available (but they are, of course, also being used for many other conditions.)

 

[Neveradullday!]

I heard an interview with an Alzheimer's Society representative this morning, where he said this new drug could delay things for a few months. Asked was there any point, he said it would ease pressure on care providers.

I think the general public may be under the impression this is the beginning of the end for Alzheimer's. Don't hold your breath, anyone!

 

[nitram]

It also says nationwide there are 88 PET scanners available

Reasonably accurate list

UK PET Facilities

The UK PET Research Network aims to stimulate and support the use of Positron Emission Tomography (PET) in cancer research in the UK.

www.ncri-pet.org.uk

 

[Canadian Joanne]

It seems to me, the real hope for the future would be to prevent Alzheimer's in the first place.
We're told it isn't a natural consequence of aging - let's hope that's true. Can it be prevented by good diet, sufficient deep sleep etc. - maybe.

20 years ago I was told there should be a vaccine in 20 years. I didn't believe it then. We still don't what causes it but @Neveradullday! aging is the best known risk factor. So AD may not be a natural consequence of aging but aging plays a significant part.

 

[Tricot]

I believe Fiona Philips is making a documentary charting her experiences with the trial drug.

This will be interesting. She's on the trial but doesn't know if she's receiving the new drug or if she's taking a placebo. It's good to see such a high profile person speaking up about dementia.

 

[nitram]

I believe Fiona Philips is making a documentary charting her experiences with the trial drug.

The trial she is on is not for Donanemab, she is on Miridesap
https://www.itv.com/news/2023-07-04/broadcaster-fiona-phillips-diagnosed-with-alzheimers-aged-61 .

Both her parents died from Alzheimer's.

​

 

[Grannie G]

Thank you for that @nitram. The report I read didn’t identify the drug.

 

[Neveradullday!]

20 years ago I was told there should be a vaccine in 20 years. I didn't believe it then. We still don't what causes it but @Neveradullday! aging is the best known risk factor. So AD may not be a natural consequence of aging but aging plays a significant part.

You're correct, @Canadian Joanne aging does play a significant part.
I have mentioned before, remembering the average ages of death in the 1970s, being 73 for men and 78 for women. That seems a good deal these days, many folk would miss this dreadful disease, but still have plenty of years to live a fulfilling life. Just a thought.