Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

How much money to save a life

149 replies

Frustratedandunsure · 18/10/2024 21:47

So I was reading this https://www.bbc.co.uk/news/articles/c7v6g9q6rjqo BBC article about a life saving drug being denied on the NHS due to price negotiations with the manufacturer.

Interesting that this drug is available in other countries like Canada who also have a nationalised health approach, so it looks like we are arguing over what a life is worth. Personally I would not mind paying higher taxes to ensure all drugs are available for everyone as I would like the assurance it was there if I ever needed it. Having to be told a drug is available but you don’t qualify or we won’t pay when you are facing end of life decisions is beyond heartbreaking.

but I would be interested in others view ? Can we not save everyone and should we prioritise our NHS budget on treatment that has a better business case ?

A photo of Jeannie Ambrose. She is wearing a black top and is stood in front of a tree in a garden with a tree. She is slightly smiling.

Enhertu: Breast cancer patients denied life-extending drug in NHS row

Jeannie Ambrose, one of about 1,000 affected patients, says the drug should be made available on the NHS

https://www.bbc.co.uk/news/articles/c7v6g9q6rjqo

OP posts:
Ghouella · 18/10/2024 22:27

The NHS is willing to spend £1.8 million per dose (it's a single dose treatment) on zolgensma, a progression delaying / potentially life saving treatment for babies born with SMA. I think part of that is probably recognising the potential for that type of treatment to be utterly transformative to the course of the disease, particularly as it continues to develop. So the NHS will spend big, really big but it has to spend responsibility. I think very unfortunately for sufferers this treatment simply does not have the efficacy or potential to justify the cost.

PippyPip · 18/10/2024 22:28

Frustratedandunsure · 18/10/2024 22:18

I agree there’s a cost analysis to all treatments- we need to draw the line somewhere. Of course we can’t offer elective surgeries line noise jobs on the NHS etc but isn’t it interesting that places like Canada have offered the drug. America is an outlier because of course it’s been accepted there, insurance companies are the ones who need to be convinced to pay. So is it fair that depending what country you are in, depends on what access to drugs you have, especially when the NHS is seen as a high quality offer.

I am on the fence with this one. But OP I did just want to point out that the drug is available on NHS Scotland, but not NHS rUK. Which possibly adds another layer.

Labraradabrador · 18/10/2024 22:29

LikeWhoUsesTypewritersAnyway · 18/10/2024 22:13

I can't get worked up about this @Frustratedandunsure

Because this expensive drug ONLY extends someone's life for SIX MONTHS.

So YABU.

6 months on average - for some it will be significant more, for some it will make no difference. The real question is how do we better identify which patients are likely to benefit vs, not.

Frustratedandunsure · 18/10/2024 22:30

PippyPip · 18/10/2024 22:28

I am on the fence with this one. But OP I did just want to point out that the drug is available on NHS Scotland, but not NHS rUK. Which possibly adds another layer.

The Scottish availability is incredibly interesting - makes me thinks about moving. Also be I couldn’t find an answer in Google but do we think this drug is available via private health insurance ?

OP posts:
Ghouella · 18/10/2024 22:30

Labraradabrador · 18/10/2024 22:29

6 months on average - for some it will be significant more, for some it will make no difference. The real question is how do we better identify which patients are likely to benefit vs, not.

That's such a good point. If it becomes possible to identify those patients who will benefit more, eg by a period of years, suddenly the cost of the treatment in those patients is easily justified.

ClytemnestraWasMisunderstood · 18/10/2024 22:33

JohnTheRevelator · 18/10/2024 22:10

I do sometimes wonder why these drug companies bother developing these life saving/life extending drugs because as is the case here,the NHS won't pay for them!

Because they don't just sell to the NHS....
People are willing to spend £££/€€€€/$$$/bitcoin, etc if they think there is a 'miracle cure',

Jammedchakra · 18/10/2024 22:34

Frustratedandunsure · 18/10/2024 22:18

I agree there’s a cost analysis to all treatments- we need to draw the line somewhere. Of course we can’t offer elective surgeries line noise jobs on the NHS etc but isn’t it interesting that places like Canada have offered the drug. America is an outlier because of course it’s been accepted there, insurance companies are the ones who need to be convinced to pay. So is it fair that depending what country you are in, depends on what access to drugs you have, especially when the NHS is seen as a high quality offer.

Life isn’t fair. Ask people living by the roadside in India.

Kendodd · 18/10/2024 22:34

Frustratedandunsure · 18/10/2024 22:30

The Scottish availability is incredibly interesting - makes me thinks about moving. Also be I couldn’t find an answer in Google but do we think this drug is available via private health insurance ?

Are you dealing with the disease op?

DangerMouseAndPenfoldx · 18/10/2024 22:34

You surely must have noticed this happens often.

New drugs are developed (and developing them genuinely costs a bloody fortune). Pharma market them to recoup those costs and make money.

They are most expensive early in their sales cycle. NHS won’t pay.

Pharma funds patient groups to campaign for them. Sob stories hit the news. NHS still won’t pay.

Cycle continues.

Eventually both sides move to the middle in the negotiation and a deal is struck.

indecentshoes · 18/10/2024 22:34

I don't follow the logic here. The spend on patients who benefit less would inherently be significantly lower as they would die sooner. The group of patients who are likely to benefit has been identified already.

NeverDropYourMooncup · 18/10/2024 22:37

They're trying to see who blinks first - the NHS/MPs after some good press, or the pharmaceutical giant who has to work out just how much they want to miss out on a huge potential customer by refusing to reduce the unit price.

Ineffable23 · 18/10/2024 22:39

This is really hard, and a really emotive subject.

You're talking about £3.5k a week ish I think from what they said on the radio earlier today.

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=kclpure.kcl.ac.uk/portal/files/198637092/NICE_s_modifiers_final_accepted.pdf&ved=2ahUKEwj887m58ZiJAxXiX0EAHeLCFa8QFnoECCQQAQ&usg=AOvVaw39Otk6pZ49cB5q5qcF_UZo

This is an interesting document, I have only read a chunk of it so far but it's talking about the disease severity modifiers. Basically before only cancer was prioritised over basically all other illnesses but they have changed it so now a broader range of illnesses are considered but in comparison to the old system it looks like some cancers have been deprioritised.

https://www.google.com/url?opi=89978449&rct=j&sa=t&source=web&url=https%3A%2F%2Fkclpure.kcl.ac.uk%2Fportal%2Ffiles%2F198637092%2FNICE_s_modifiers_final_accepted.pdf&usg=AOvVaw39Otk6pZ49cB5q5qcF_UZo&ved=2ahUKEwj887m58ZiJAxXiX0EAHeLCFa8QFnoECCQQAQ

iamtheblcksheep · 18/10/2024 22:40

The cost of this drug is £7500 for every 3 weeks according to google. In an ideal world we would give everybody everything they need. This is not the reality.

Drugs are overpriced but what do you do to resolve the problem? Profits are ploughed into research which will be eventually provide a cure

indecentshoes · 18/10/2024 22:40

Also this is not a new drug. NHS already pays for it when it comes to treating different types of breast cancer. But presumably not worth spending the money on women who are going to die anyway.

Anothercoffeeafter3 · 18/10/2024 22:41

6 months in end stage disease mightn't even be good quality life tho metastatic disease isn't pleasant.

I would rather we invested that money in curative research. The other option is to have an insurance scheme that covers drugs like this or pay more for the basics that the companies manufacture maybe with extended patents on the middle ground drugs which we can self fund.

Frustratedandunsure · 18/10/2024 22:42

Kendodd · 18/10/2024 22:34

Are you dealing with the disease op?

Haha no I was joking. More that they have more to offer should I need it

OP posts:
NannyGythaOgg · 18/10/2024 22:43

It can be a two way thing.
Many people with hypothyroidism benefit from T3 (as well as the T4 that is regularly prescribed). T3 is costed to the NHS at over £100 per month. I buy it OTC for less than £5 a year. (My GP knows and "approves")

There are also drugs which are definitely unproven that the NHS haven't agreed for prescription

There are also times when the NHS fucks up and won't presvribe.

If I knew which this was, I would definitity have a view

Bigcat25 · 18/10/2024 22:44

I was talking with a dr relative about this. They mentioned an organ transplant can be up to two million Canadian, and that more lives could probably be saved if the funds were allocated elsewhere. Especially in the case of liver transplants, if the recipient had a drinking problem and would continue to drink.

MargaretThursday · 18/10/2024 22:48

If you start saying cost to save a life you need to consider it as this:

The NHS has a limit on the amount of money.

If this drug is approved, what is going to go? A special care baby nurse maybe? Or maybe a drug that slows down Parkinson's? Or that rare, not very well known illness that your friend has, which the drugs give her a reasonable quality of life for an extra 10 years?

It's not a cost on saving a life, It's making a decision on best spend for a multitude of people.

Kendodd · 18/10/2024 22:54

I remember a GP friend of mine once told me that you use (can't remember exact numbers) something like 60% of the healthcare you will ever receive in your life in your last two years. I suppose really we should count our blessings that we're lucky enough to live in a time, across the whole sweep of human history, with good modern medicine.

Kendodd · 18/10/2024 22:59

Bigcat25 · 18/10/2024 22:44

I was talking with a dr relative about this. They mentioned an organ transplant can be up to two million Canadian, and that more lives could probably be saved if the funds were allocated elsewhere. Especially in the case of liver transplants, if the recipient had a drinking problem and would continue to drink.

And I suppose if you want to get even better life saving per dollar, don't do the transplant, spend the money on clean water in the developing world.

Kendodd · 18/10/2024 23:02

Or better still just, as a world, decide to stop having wars and spending most of the world's money on that.

Bigcat25 · 18/10/2024 23:04

Kendodd · 18/10/2024 22:59

And I suppose if you want to get even better life saving per dollar, don't do the transplant, spend the money on clean water in the developing world.

Absolutely.

SummerInSun · 18/10/2024 23:06

The pricing of drugs is massively complicated, because the drug companies charge as high as they possibly can to try to recoup the massive research and testing costs (including of all the research that goes nowhere). If the NHS agreed to pay whatever the drug companies wanted to charge for every new drug, it would be even more bankrupt than it is. Instead, it holds the line and the drug companies then drop the price.

There are also a whole bunch of Competition and Markets Authority cases where drug companies have been fined for "excessive pricing".

SummerInSun · 18/10/2024 23:12

NannyGythaOgg · 18/10/2024 22:43

It can be a two way thing.
Many people with hypothyroidism benefit from T3 (as well as the T4 that is regularly prescribed). T3 is costed to the NHS at over £100 per month. I buy it OTC for less than £5 a year. (My GP knows and "approves")

There are also drugs which are definitely unproven that the NHS haven't agreed for prescription

There are also times when the NHS fucks up and won't presvribe.

If I knew which this was, I would definitity have a view

How do you get T3 so cheaply?

Swipe left for the next trending thread