How much money to save a life

[Frustratedandunsure]

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 ?

Not just manufacturing costs though, research and clinical trials cost enormous amounts of money.

If they can’t recoup that money and make a profit those drugs aren’t going to get made in the first place.

We could have an entirely socialised drug R&D process but then exactly the same calculations are going to be made. Governments are not going to spend big money on drugs that affect relatively few people or the elderly.

Well yes, 1 in 3 get dementia, no real drugs that really change things.
Then of course the question is for folk like Rob Burrows who died with motor neurone disease, and myself with mid stage Parkinson’s, 62 being increasingly disabled by it and all the others , no remission and no real game changer drugs.
We have no less value as people than you do, to assume that is well awful 😡

We are young women - well I’m 56. Many of my friends are in their 30s & 4os who have this disease. We are, in general mums. So talk of ‘extending geriatric care’ is not appropriate to this debate. Many of us have our children later in life so - most of us have school aged children. These are the facts.
This disease is the Biggest killer of young women between the ages of 32- 64. So… it is about money spent on women in their prime of life with responsibilities to their families.

I have read some of your messages. And the main thing that comes across is there really is a need for better health education for women in our country. I am shocked that the pink fluffy breast cancer messages ( October month) are not giving women the full facts about how this disease impacts us all.

When a condition is the biggest killer of young women 32- 64 we all need to pay attention - see through the sound bites and get the facts. And understand the tactics of giants like NICE and the MPS and big Pharma.
Because like it or not - this will impact all of your lives in one way or another : you / your sister- your aunty - your mum.

Many of OUR drugs - are now being extended to primary BC patients to help stop them getting advanced. So these drugs do not just extend ‘Advanced bc lives’. They do prevent Advanced. Another established drug: Herceptin which is used prevalent by BC patients was once held back by NICE. But now it is saving so many primary BC lives and advanced.

One brave lady took NICE to court. She lost out but the NICE ruling was eventually overturned and now look at it. It saves so many thousands and thousands of primary BC lives.

Enhertu got a standing ovation. It's a significant jump forward. It’s available in 19 European countries. And may one day soon be given to all primary BC women. So these drugs have wider applications. You can get it in the UK if you live in Scotland or if you have private health care. This postcode lottery is not fair. NICE is the outlier in Europe & the wider world.

Cancer care for BC has improved so much. We have the support of our macmillian nurses and oncologists. We want it to go further and stop 31 women in their prime die from this disease everyday.

Yes nhs has a finite pot. We are more aware then most of just how remarkable the nhs is. But let’s not have the money men throw women under the bus first. We are vital women: to society and our families. Many of us still working and paying into the system.

I live so well - thank god we have the brilliant drugs we do have. Thank God for my health care team. Now I have a couple of major focusses - to see my son through to adulthood. AND to see if we can improve women’s BC cancer care. Oh and educate our young women about the health care challenges they will face.
thank you 🙏
#showusuoursupport #enhertunow

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As for the title of the OP 'what price a life' . Well if we really do want to act with mortality on that, saving as many lives as possible, none of these super expensive drugs or treatments would be funded. All the money instead would go to providing clean water and more basic treatments to people in less fortunate parts of the world so let's stop pretending mortality is the big driving factor. The real question is what do we want our money spent on and spent in ways that might or will benefit us or our families, friends or neighbours .
I'm not saying our (real) stance is wrong btw. There a well know thought experiment, you can spend money to save the lives of 100 people in your country or 101 in a country on the other side of the world. In every country its tried in, people vote to save fewer lives closer to them, its just human nature.

@AdvancedBreastCancerThriver Nailed it.

Sorry I was listening on the radio and can’t find what I heard but apparently once the drug is rolled out and used and the money is recouped. I don’t know how or what that’s why I said I’m not confident in what I heard.

@AdvAdvancedBreastCancerThriver
I would disagree with you that extending the lives of the extremely elderly isn't relevant to this debate because its all about where a limited amount of money goes. I have long thought that we should focus more of our health budget on the working age population (to the horror of many). We need to keep people well and working for the benefit of wider society. An obvious example of this would be ie. knee surgery. A knee surgeon needs a new knee and can't work without it. You have a two year long queue for knee surgery. It would be madness imo to make the knee surgeon wait their turn same as everyone else, making the wait longer for everyone in the name of fairness.

@Nsky62 It is true, Parkinson's and other neurological conditions, do not receive the same amount of publicity or coverage.

My partner has Parkinson's and I have metastic breast cancer. I just hope we can both continually live well, for as long as possible, by taking one drug or another!

Very true, GreatSnail, though it can be a bit of a wait while the pharma companies are charging to recoup their R&D costs, but at least it means more get to access the medications in the end

We are young women - well I’m 56. Many of my friends are in their 30s & 4os who have this disease. We are, in general mums. So talk of ‘extending geriatric care’ is not appropriate to this debate

I guess that depends on what's considered "geriatric", @AdvancedBreastCancerThriver, and as a rule of thumb the NHS consider it to be 65+

Obviously under the QALY system there's more chance of a younger person's treatment being funded, which largely takes care of the family responsibilities thing, and on the whole I'm comfortable with that - even as a 68 year old who hardly wants to write myself off

Mostly though I agree with those who say that none of us are getting out of here alive, and that remains the case no matter what money's spent

Thank you for including the debate on mumsnet 🔥 And helping to dispel the many myths around advanced breast cancer. This disease is targeting younger women. 90s ladies sadly wouldn’t tolerate these treatments. But us younger women do and we really thrive on them. We can have chemo/ targeted treatments and go and pick up the kids. And yes the progress has been phenomenal these last few years. We are beating the odds we were originally given. Many of us are ‘super Thrivers’ 5 plus years and going strong. Why shouldn’t we hope for this disease to become manageable? Let’s have a health service that has high expectations for us all.

A ‘primary breast cancer’ patient incurs a huge bill and cancer in general is on the rise. So society has to make decisions.

Please Listen to woman’s hour today and hear my friend Kate talk again at 4pm for more in formation about the campaign for Enhertu.

photos show Kate & Jeannie ( on bbc news) and many of the lovely women who sing in the ‘Check & Change’ choir - presently in the charts
Proud of these ladies. And learning from them to use my voice to speak up against injustice.

These are women in their prime of life with advanced cancer and this is what we look like 🔥🪩These are women in their prime of life with advanced cancer and this is what we look like 🔥🪩
thank you. X lee

@AdvancedBreastCancerThriver as a person with metastic BC, I hear you.

But men and women are having to work longer for various reasons.

Surely ALL members of society should have equal access to the drugs they need to continue living?

I think you’ve kind of missed PP point about extending geriatric care - they’re not suggesting that is what this drug is for, but it is relevant because of the finite resources available. They were actually saying that they don’t agree with spending the huge sums of money currently spent to extend very elderly infirm people’s lives, which may free up cash for this kind of thing.

I think lots of people would argue that children and younger people should be prioritised over, say, someone who is 80, or someone who already has such advanced disease that it’s a case of slightly extending a very poor quality of life.

You need to report properly if you're going to stir things like this up. It's not life saving, it gives maybe 6 month longer. No, I don't think unlimited money should be available for that.

I actually think more harsh decisions need to be made, to save the NHS, when people have low life expectancy and poor quality of life.

Obviously if it was me or my loved ones I'd find that hard to take, which is why these decisions can't be made by those involved.

@Newposter180 yes I understand that, particularly in the case of very advanced disease.

Urghh it's such a moral and medical debate; I'm not sure what I think.

I'm just happy my cancer drug is a. Keeping me alive and b. I am able to have some quality of life. That doesn't mean it's easy.

Anyway, I digress.

@JohnTheRevelator
It's because they might do exactly what you want them to on mice, for example, but when it comes to tests on humans, they have limited success or have unacceptable side effects. It's very unfortunate and very disappointing for the scientists, but you don't know until too late.
By this time, so much time and money has gone into the development that even if the drug's use is limited, it's still made, so that some patients can get some benefit (and the company can recover some costs). There is always the possibility that a tweak will achieve a breakthrough.

I would very much like to know this too as my GP won't prescribe me T3 when my bloods reveal I would benefit from it. Please PM me if you wouldn't mind, thank you.

If it was you or a loved one, you would definitely find it very hard to take.

Do you know how fucking scary MBC is?

Yes, I said that.

Yes, I have nursed the person I loved most in the world to their agonising death, but I'm not convinced another 6 months should have an infinite price tag.

The news items never explain properly about enhertu.
It is available on the NHS for those with Her2+ breast cancer where it is shown to be more cost effective than in those patients with low Her2+ breast cancer where it is not allowed yet. Perhaps when more results are available.....

No one one knows how anyone has got left @Redruns

6 months as a guide; but the reality could be much much longer.

My drug has an estimated working time of 18 months to 3 years. But many women are getting 5/10 + years from it, before moving to another drug.

Ok @Frustratedandunsure you say you're willing to pay more tax. How much? For all these drugs to be available? £5k more per year personally? £10k?

Edit: sorry was trying to quote this:

@Whyhaveibeencutoutofmamsnot

"The news items never explain properly about enhertu.
It is available on the NHS for those with Her2+ breast cancer where it is shown to be more cost effective than in those patients with low Her2+ breast cancer where it is not allowed yet. Perhaps when more results are available....."

This is helpful.

So I think essentially what we have here is that there are different types of breast cancer.

Some cancers have Human Epidermal Growth Factor Receptor 2 (HER2 positive). That means that the protein may be made in excessive quantities. That means the cells divide quicker than usual, and makes it more likely to spread.

HER2 status is established by means of s chemical assay (test) and essentially previously it was qualitative (i.e. yes - positive, or no - negative) but now that test is quantitative so, recognising that people can have different levels of HER2 proteins.

The drugs in question are monoclonal antibodies (i.e. a single antibody where every antibody in the drug is identical), attached to chemotherapy drugs. The monoclonal antibodies are like locks which only fit a HER2 shaped key.

So if a cancer is HER2+ there are lots and lots of keys, so lots of the antibodies will bind to the right cells, meaning the chemotherapy will target the cancer cells.

But the less HER2 there is, the less effectively it will be targeting those cells.

So that's why it's been approved for HER2+ cancer's, but not HER2 negative or HER2 low cancers. I can see why that's upsetting but it does make sense when you go through it.

I think overall the main advances we should see over the coming years is massively improved sequencing and hopefully a much wider range of monoclonal antibodies so they can bind to more and more cancer types. Because it would be much more effective to have a monoclonal antibody that is against an antigen (protein on the outside of a cell that an antibody can recognise) that a person's cancer has lots of than trying to use monoclonal antibodies against antigens a person has very few of.

We are, some have a better innings than others!
Cancer is largely treatable, and successful for lots, nuero stuff isn’t, mainly, no remission and gets less funding.
No of us are more valuable than the rest, tho cancer gets more advertising and funding