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 ?

The 'available in other countries' thing is massively misleading - it is available in the UK (as in licensed) but the NHS is considered to be amazing world wide by all the very many oncologists I have met by actually considering the cost/benefit of new drugs and technology before they are funded. The drug companies put a lot of effort into getting patient groups to advocate for new drugs even when there are really unrealistic expectations of what they can do

This is a drug that will be a line of treatment for me. I have secondary breast cancer and on my first line of treatment which I’ve been on for just under two years. (Which is good, some last 6 months others longer). The drug I’m on went through this process and thankfully was approved or I would not be here today. It has stopped my cancer growing and I am here to see my kids grow up for now. It will stop working one day and I will move on to the next line of treatment that I hope will last a few years and so on. Enhertu if the UK NICE approve it will do the same for me. 6 months is just an average it hasn’t been around for years yet to give better averages but it will improve over time.
It's important to see that 19 countries have approved this throughout the world including Scotland. England NICE downgraded secondary (metastatic) breast cancer from the severest category (which is madness as if you have it you will die from it eventually). This is why it wasn’t approved from the getgo. The drug company reduced the price of this med, cheaper than what scotland pays and NICE still said no.

1:2 people will get cancer wouldn’t you want as many drug options available for yourself?

Hello
I’m one of the 31 women that marched to parliament and exposed are scarred ( and painted) boobs to demand access to Enhertu. And that brave lady above in the bbc news is my friend ( one of us 31)
And yes I have a few years ( hopefully more) to live. Jeannie above has managed 5 years so far. And I live very very well on my meds. The drugs I’m on( Ribo) are amazing new drugs - that give women on average 2 years. My tumours have shrunk. Many of my friends are now NED ( no evidence of disease) after this treatment.But we know at some point the cancer ‘wakes up’ and we go onto a new line of treatment and pray for some more years. That’s how it is for us. ( 30% of primary bc patients go on to develop what we have).

I know friends who’ve gotten 6 years on their first line of treatment. I know people who’ve lived 10 years and more.

A few years ago, before these innovative drugs were available - mums like me just died. Now we are thriving on the meds and getting more valuable time seeing our kids grow up. I want to see my teen finish school and go into adulthood. I want to continue to pursue the career I love (as a screenwriter and gymnastics teacher). ‘6 months’ is minimum. Most women on the Enhertu fb page have been taking it for 2 years. It’s new so the stats they are using are already out of date and limited to a specific trial data - not a larger cohort.

I would do anything for an extra two years with my baby cakes and the love of my life - my hubby. So please understand - the stats and survival rates are skewered because there is ‘not an audit on women with advanced bc’. The nhs have been told to count us and had 10 years to do it but…the recent audit admitted they failed to harvest the data. So We are not even a statistic. How crazy is that. If you don’t count us - how can you improve you care towards us? This is just one of many injustices that we experience. We really are the dark side of pink.
And we have had enough. I want me - my friends and any of you who go on to develop this disease - to have drugs that will give you at least a few good years making memories with your kids. AND I want to see this condition become a chronic disease ( like hIV) Enhertu is the beginning of a range of drugs that will see women not just thriving BUT surviving. And we need other women to stand with us on this. Advanced breast cancer is the biggest killer of women between the ages of 32-64.

The downgrading of our disease to ‘moderately severe’ by NICE) will stop the new innovative future drugs coming to the UK.
It won’t be Scotland we have to move to ( as is the present case) It will be America, Australia, France, Spain, Romania, Bulgaria, Italy etc..

so we don’t want to fight - not now - but we have to.
Thank you. Xlee

If the data is wrong, then the decision is wrong. I'm sorry about the situation you are in. I share your hope that metastatic breast cancer becomes a disease to live with, not die from.

As someone who will need this drug but not be allowed it currently, no it will not save my life. My cancer is incurable. However I have 3 young children and 6 more months with them could be the difference between starting high school with a mum or not. I am disgusted that we are not considered valuable enough to be given a drug which is currently available in other countries, including Scotland. “A life” is easy to dismiss, however MY life means so much more to my children.

I’m sorry for your situation and hope for the best outcome for you. It probably goes without saying that you can’t have an unbiased view of this particular drug. To answer your question: of course everyone would want all drug options to be available to them, should they need them. The trouble is that there is not an unlimited pot of funds, so offering absolutely everything to everyone is simply not possible, and someone somewhere needs to set budgetary priorities and weigh up the cost/benefit of each drug. I say this as someone who has lost multiple family members to cancer.

^ Sorry not sure what’s happened but that was posted a while ago as a response to Ihavenoidreawhatname not the more recent posts

Cynic17, you're right, the quality of life may not be very good either. It's a tough one.x

Thank you @AdvancedBreastCancerThriver
Would the NHS or patient groups consider rationing on the basis of age.
My sister with breast cancer and a young family is in a very different place to my MIL's friend at 87.

I am truely squeezed at the moment between middle aged people seeking day to day quality of life or reaching for extra time and my parents generation who have extended life at often huge cost across multiple comorbidities but at very poor quality overall.

The anger that I feel for my sister whilst my MIL witters on about her friend pushing the NHS to provide more and more options at 87.

Unfortunately there will be no break through when you’re at the metastatic end stage of cancer.

I heard it on the way to work yesterday morning. The intonation in the interviewee's voice was heart-breaking. I had tears rolling as I drove along.

Of course we should be funding it. It is what the NHS is for and it is young women with or without young families and we should be giving them extra time, which normally turns out to be longer than the consultants suggest.

@SisBucket I agree with you. I am not really in favour of older people consuming more resources, whether that is public or private money.

But by the same vein we allow elderly, frail people to get treatment for various illnesses that would end their lives and extend them for weeks or months at a time knowing that they are unlikely to be alive by the end of the year.
I am a nurse in the community and I am
actually saddened by the lack of willingness of medics and families to allow their elderly and frail patients/family members to die with dignity. In the recent months I have had a patient in their 90s be admitted to hospital and have a chest drain put in, a week in hospital and then get home only to die within a month of another chest infection. Another patient who has dementia and is in a care home who was admitted after falling ill, in ICU for a few weeks and treated for x and y and got out of the home as a a full hoist with no mobility and barely even communicating with anyone, unable to swallow properly. Died within the week.
These people should be allowed to die rather than being treated and spending their last weeks and days in hospital at a huge cost to the NHS when everyone knows their lives are not going to be extended for any length of time and often at a far worse quality.
Before anyone thinks I am heartless, I love my patients and am saddened by every death. But often these wee ladies or gents are ready to die and have lived happy lives which they are now aware are not good quality and often their loved ones and friends are dead too and they feel a burden to their families.
The reality is we cannot treat everyone- but extending a life which is already going to be cut short and could mean a mother seeing a child graduating or celebrate their 40th would be better spent imo than extending an octogenarians life by weeks… yet that happens every single day in the NHS.

We need a national campaign to discuss with our loved ones the limits to the care we expect and want. We need people to have powers of attorney sorted out to speed up discharges out of hospital. Even if these are paid for by social and healthcare budgets for those who can’t afford it. We are a society with an ageing population and we need to address these issues.

Yes I get the limited pot of funds but for other countries to approve it is the over arching discussion why wouldn’t we.
As with all drugs they cost money however I was listening on radio yesterday regarding what money is given back to the nhs after several years of approving this drug. I’m not totally confident on this but I believe the nhs get their money back eventually.

Completely agree with this. I think death is such a taboo in this country that we don't want to even talk about it, let alone make policy decisions about when death is actually the best option for someone.

There comes a point when we will outlive our individual life expectancy. I don't mean just in terms contracting a terminal illness but just the age where our bodies and minds start to decline to a point where it is a huge effort to maintain any sort of quality of life. I have been alarmed and shocked by how many of my elderly relatives have declared that they would like to die. I think as a younger, fit and healthy person that it is almost incomprehensible to imagine getting to this point but it does seem to come to most people. Dignity and comfort should be emphasised more than simply keeping people going.

The NHS is not a bottomless well of money.

Difficult decisions have to made and these heart-tugging articles are unhelpful and as has already been discussed, don't really give the full facts.

And with limited resources we unfortunately have to do our best to keep emotion out of it. If it can't be done for all due to not just cost, but limitations of staffing and infrastructure, then how do you judge who would be most worthy?

I have had a little insight into this working in the NHS and in a sector with increasing demands and with almost everyone having a reason why they think they should be prioritised.

And it's virtually impossible to do that. So sometimes, it's better to say it isn't possible rather than attempt to triage or prioritise.

I agree. If it's a choice between a drug that can,say, extend a life indefinitely or for years, and one that could give someone 6 months - thats an obvious choice for me.

It can't be easy to make these decisions - to choose one life over another - but the NHS doesn't have an infinite pot of money.

No we can't 'save' everyone. There simply isn't enough money to go around. Life is finite & nobody can live forever.

We need to provide the basics to everyone. No one dying or suffering from poverty or preventable disease. Elderly care & end of life care of as high standard and as comfortable as possible. No one dying of suicide through lack of basic mental health or SEN support.

There's no money for expensive drugs to prolong the death from incurable cancer by 6 months. How much could £30k a year change the life of someone with a severe mental illness or SEN who will go on to live for many years.

Sorry not clear on what you mean by the NHS getting their money back eventually?

It's really hard but what struck me when I read the article was how much treatment for, say, mental health you could have for the same money. People on endless waiting lists for Camhs and adult services won't die medically from what they've got so are their needs bottom of the pile?

I complete agree with @fourelementary - there is just too much treatment in some stages. I've had a relative in a dementia home and seen the other people there. I also remember a programme a few years ago about some very old and sick people with multiple issues and dreadful quality of life whose families were offered treatment so took it and ended up prolonging a life - not helped really by the medical teams offering the option of treatment without more of a question about whether it would have any benefit to the patient.

This comes with the huge caveat that I am very grateful it's not me in the position and I understand people fighting but am just not sure it's currently the right place to spend the money with so many other
competing needs.

Who would pay extra? Genuine question.
If it is based on who pays for prescriptions, then that would only be about 5% of all treatments delivered would have an extra charge on top. It would introduce a whole layer of bureaucracy, stop people going to the doctor because they couldn't afford it, and mean the people contributing most to the funding of the NHS would be the only ones excluded from the 'free at point of use' service.

It's not just the NHS / UK they're selling them to

Otherwise I agree that an "extension" of just a few months - possibly in unpleasant circumstances - may not be regarded as a holy grail worth spending £££££ on

I am being treated for breast cancer. I would not take this drug to extend my life by only 6 months. From a purely selfish point of view, the drugs I am taking at the moment (which are to reduce the risk of the cancer returning) are so unpleasant that the thought of just another 6 months while having really nasty side effects (disclaimer - I don't know what side effects this new drug has) isn't an incentive to me at all.
I saw something on television last night explaining the cost/benefit calculations NICE does to work out whether they will pay for medications - it seemed to be about the seriousness of the condition rather than about the benefit to the patient, but to me 6 months of additional life isn't enough to make it worthwhile. The drugs I am on at the moment should give me several extra years of life - but should my cancer return I would not start another drug that would reduce my quality of life so much. It is only knowing that I only have to take this one for another 10 months and then, hopefully, I will be able to have a more or less normal life for a few more years that gives me enough incentive to carry on taking it. The lady pictured now has bone and liver metastases - everyone has their own reasons for wanting to continue treatment but only another 6 months with that level of disease would not cut it for me.

I have a wonderful husband and family, a very supportive job, enough money to live on, a nice house - everything to live for.... but life is very difficult with the level of side effects I have from my treatment. Extending it by a mere 6 months would not be worth it for me. I would rather make the most of what time I have left while I am still comfortable enough to do so, and then go as peacefully as possible.

And once the patents end, other drug companies can make replicas for much, much cheaper.

It's when patents are active that drug companies can charge whatever they like which isn't based on actual manufacturing costs.

Once the patents end, cheaper generics come on the market.

Completely agree, I think it's positively cruel they way we extend the life and suffering of the very elderly. Example- relative of a friend died in her 90s. Had dementia for the last six years as well as multiple other painful conditions. The last three years, because of the dementia, she spent screaming in terror because she didn't know anyone or what was happening to her and the physical pain she was in. This poor women was absolutely front of the queue for every vaccine going and only had to stiff for the doctor to be called out and antibiotics and other treatments given because there was a risk she could die. Terrible suffering was extended as long as possible and at huge financial cost.

This sort of treatment is absolutely not going to happen to me.
I think it would be a good idea for the government to offer everyone retiring a meeting with some sort of social worker to discuss retirement living. This could cover financial planning, being in suitable housing close to transport and services, keeping fit, when to stop driving, wills and end of life care/advance directives. Make plans years before they are needed to make the most out of this last stage of life. Of course I don't think any government could introduce these voluntary advice sessions because the screams of 'THEY WANT US DEAD' from the Daily Mail would be deafening.