Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

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:
Jkkk · 18/10/2024 21:53

Absolutely disgusting but not surprising as it’s a drug to benefit an illness that affects in the main, women.

HerefordHeifer · 18/10/2024 21:59

It’s not a life-saving drug, though; according to the news article it can extend life for up to 6 months.

In an ideal world then yes of course everyone should get every treatment possible. But in the real world there are budgetary constraints. If someone gets this treatment, then someone else can’t get their treatment.

It’s a difficult decision, but someone does have to make this kind of decision.

DelicateSoundOfEchos · 18/10/2024 22:06

I don't know, because this drug doesn't save lives it extends them by 6 months. When people are battling to get treatments for other conditions that means they can live a full and healthy life, or actually save their life, then I agree that money shouldn't be spent on this.

Frustratedandunsure · 18/10/2024 22:06

HerefordHeifer · 18/10/2024 21:59

It’s not a life-saving drug, though; according to the news article it can extend life for up to 6 months.

In an ideal world then yes of course everyone should get every treatment possible. But in the real world there are budgetary constraints. If someone gets this treatment, then someone else can’t get their treatment.

It’s a difficult decision, but someone does have to make this kind of decision.

Fair enough it’s not a cure but it’s a life extension right ? It says in on average patients get an extra 6 months but some have lived over 3 years - either this gives you more time to do end of life stuff or have the hope that a break through is around the corner.

Medical breakthroughs do happen every day - look at diabetes, AIDs. Things that were death sentences are now manageable. Obviously we are not 3 years away from a cure but one day that will be the case. Wouldn’t you hope your government and health care valued you enough to spend the cash.

agree though every pound can only be spent once, where and on what is a tough choice.

OP posts:
Fifthtimelucky · 18/10/2024 22:08

HerefordHeifer · 18/10/2024 21:59

It’s not a life-saving drug, though; according to the news article it can extend life for up to 6 months.

In an ideal world then yes of course everyone should get every treatment possible. But in the real world there are budgetary constraints. If someone gets this treatment, then someone else can’t get their treatment.

It’s a difficult decision, but someone does have to make this kind of decision.

I agree. I wouldn't want to be the person who made these decisions but it is right that we have a process.

Would it be a good use of public resources to spend £100k on a drug that prolongs life by 6 months on average? £200k? £500k? £1m?

I don't know the answer. I'm sure if it were my life or the life of one of my children I would think it was worth it, but emotion has to be taken out of this sort of decision.

We cannot save everyone, even if we could afford to.

Cynic17 · 18/10/2024 22:09

Don't believe articles designed to emotionally manipulate you. This drug is probably not worth the high expenditure if all it does is prolong the process for a few months. It's just not possible to provide every drug available, to every patient.

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!

QueenOfHiraeth · 18/10/2024 22:11

Everyone says they would be happy to contribute more but that never plays out in practice. Look at the wails about losing the Winter Fuel Allowance, often from those who really can afford to lose it!
These are really tough decisions and, in the absence of lots of spare money, I guess priorities are elsewhere. It's heartbreaking for those affected but, ultimately, a large amount of money to extend (not save) a few lives for only a short time is unlikely to trump many other options also needing funds

Kendodd · 18/10/2024 22:11

Just skimmed the article so may have missed bits.
From what I read it doesn't 'save' lives, it extends them by up to three years at a cost of about 3.5k a week. I have no comments either way on if this should or shouldn't be spent because I don't know enough about it.
I think as much as we like to pretend not, life does have a price. Let's say a pill costs 100k each and each pill extends life by one single day, is that value? Well there's a starting point for discussion. What if for three million pounds, you can cure a disease, do you spend the money? Everyone should get the treatment ? Even 95 year olds? Like it or not, money is in the mix in decision making, because it has to be.
I wonder if this is just a negotiation tactic with the NHS though? Apparently drug companies hate the NHS because of its size and negotiating power it gets these massively expensive drugs cheaper than anyone else.

MojoMoon · 18/10/2024 22:11

The quality of the the lifespan extension also has to be taken into account
A high cost to get an extra six months of painful, stressful, unwell life doesn't seem like a good idea for an NHS to fund.
Bear in mind pharma companies often fund patient support groups who campaign for access to the drugs - they want to sell them after all.

TheYearOfSmallThings · 18/10/2024 22:12

If health services were willing to pay any asking price, pharmaceutical companies would set prices higher. And higher. And when someone says they would gladly pay any amount of tax to ensure patients could receive all available medical treatments for any benefit, however marginal, I just think they haven't thought it through.

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.

2024onwardsandup · 18/10/2024 22:15

But the NHS makes these kinds of decision all the time - ie cost benefit analysis of money to spend on a patient.

Floralnomad · 18/10/2024 22:15

Unfortunately the NHS is not a bottomless pit ,

saltinesandcoffeecups · 18/10/2024 22:17

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 there’s a whole wide world out there outside of the NHS 🤷‍♀️

And often the drug companies don’t set out to develop a ‘life extending’ drug. The set out to develop a cure and one of the ‘failures’ only delays not cures. Should they just bin the formula and say ‘whelp… that didn’t work… on to the next drug’

QueenOfHiraeth · 18/10/2024 22:18

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!

Sometimes regulators in different countries make different decisions so England may not fund it but some parts of Europe might or the private insurers in the USA. Recouping some of the costs of developing that drug could possibly help fund the next compound coming along which may be more successful and more widely used.

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.

OP posts:
Theonlywayisuptoyou · 18/10/2024 22:19

But it’s not just this one drug is it, every now and then a new wonder drug comes along and this decision has to be made over and over again. Some of these new drugs will save lives but most just prolong life or delay symptoms. What should the NHS prioritise 1 person living 6 months longer or one/two or more people getting back surgery or knee replacements that could mean they live out their normal lifespan pain free. Obviously if you or a loved one would benefit from the new drug you think the funding should go to that but if you cannot walk due to pain ( so cannot work or you struggle to be an active parent to your children) and you are on a 3 yr waitlist for a knee replacement you you think the funding should go to that instead. Hard decisions have to be made there is not a bottomless pit of money.

SisBucket · 18/10/2024 22:19

My sister is caught up in this. It's a total nightmare and completely manipulative. She's frantically grasping understandably to all the straws and it will bankrupt her family and her kids for what.
We've been ticking off bucket lists, planning funerals, we're all in complete thrall to it. Six extra months of terrible quality forget it. We'd rather pump resources into screening women so they don't get this far down the road but that's not as emotive and therefore lucrative.

Ghouella · 18/10/2024 22:20

People feel happy to spend unlimited amounts of public money.

Ask an individual though - if you had to sell the family home and spend all of the kids savings to extend your life by 6 months, would you? Would that be worth it to you?

At some point, just like there is a personal limit, there has to be a public limit. Not necessarily the same, but there has to be one. Many more lives would be saved if the same amount of money was spent on prevention, but it's not as sensational.

Frustratedandunsure · 18/10/2024 22:22

saltinesandcoffeecups · 18/10/2024 22:17

Because there’s a whole wide world out there outside of the NHS 🤷‍♀️

And often the drug companies don’t set out to develop a ‘life extending’ drug. The set out to develop a cure and one of the ‘failures’ only delays not cures. Should they just bin the formula and say ‘whelp… that didn’t work… on to the next drug’

I do think that’s interesting. I heard an anecdote from a US doctor on a random podcast (so how credible is that I guess ?) but he was giving a guy with suspected testicular cancer a 2nd opinion after his GP tested him but didnt think it was worth referring for the next stage. His view was that the ongoing cancer treatment was more profitable than the one time surgery to remove the testicle which is what he advised the patient.

OP posts:
evtheria · 18/10/2024 22:24

I think I was listening to this exact thing being discussed on R4 today. They had several people on to discuss it.

If you're interested:
www.bbc.co.uk/sounds/play/m0023yfm

indecentshoes · 18/10/2024 22:24

Hereford, as far as I understand it the reason for rejection were not financial constraints as such. The price limits NICE were willing to pay for the drug were set lower due to NICE changing the way they view metastatic breast cancer. It is no longer classified as severe disease, it's now viewed as moderately severe disease. Had old methodology been used as it was in Scotland the drug would have been approved, as it was in Scotland. I am 45, have Stage II breast cancer and may need this drug one day. I think it's terrible to put out that there is anything moderate about metastatic breast cancer. Also, 6 months is a median extension, it can extend life for a much longer for some patients.

INeedAnotherName · 18/10/2024 22:24

Interesting that this drug is available in other countries like Canada who also have a nationalised health approach,
How much is the pharmaceutical company charging Canada (or any other country) versus how much they are charging the NHS? Perhaps I missed that nugget.

If a drug only extends a life by six months, most of which won't be decent quality, then I can understand why the NHS is refusing to buy it.

LaMontser · 18/10/2024 22:26

NICE are very transparent about how they make these decisions. When I did this work the threshold was £30k for every quality added year of life and to be honest there has to be a cold formula otherwise decisions would never be equitable. There’s a different formula for treatments for rare and ultra rare diseases. They also cost new and existing surgical procedures when publishing guidelines (eg debunking the myth that elective c-sections were considerably more expensive than vaginal births a number of years ago).

There is an issue that manufacturers don’t prove the drug the same in all countries. In the UK, the “book” prices can be much higher and NICE try to negotiate a discount based on the wide scale of prescribing on the NHS.

I do think there has to be a serious consideration of how we fund our healthcare system because as medical technology advances we should be able to expect to have access to it. But there sometimes simply isn’t the cost/benefit balance to justify it on a whole-system scale.

I don’t know how Scotland balance their books by approving so many of these - it might be a scale issue.