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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to think 90000 is a small price to pay to increase people with cancer lifes

187 replies

suziepra · 08/08/2014 06:44

I can't believe the NHS know a drug is effective but refuse to pay it! I don't care how much it costs, print the money and let people live for as long as possible!

OP posts:
PlentyOfPubeGardens · 08/08/2014 12:08

In this case they already know who the 1 in 5 are, RedToothBrush:

Kadcyla is used to treat people with HER2-positive breast cancer that has spread to other parts of the body and cannot be surgically removed.

About a fifth of breast cancer cases are HER2-positive, and it is thought this drug could benefit 1,500 women a year. (from here)

However, £90,000 for 6 months comes out as £180,000 / QALY.

Generally if a treatment costs more than £20,000 to £30,000 per QALY, it would not be recommended as cost-effective by NICE.

Although for end-of-life treatments NICE will go to twice that amount. (from here)

Even if you take the higher figure of £30k and double it for an end of life treatment, this drug costs three times the usual threshold.

weebarra · 08/08/2014 12:19

Good point re causation grey lady - I'm BRCA2 positive so nothing I could have done would have prevented my cancer.

CalamitouslyWrong · 08/08/2014 13:15

I don't think anyone can judge whether it is a waste of money unless they personally have been in that position. I know for a fact that my uncle's family would have paid any amount to have him for another 6 months or longer. Of course he would still be dead now in all likelihood but these are human lives we are talking about and I believe that the money should be found from somewhere.

The problem is that the people who make decisions about NHS funding have to think in terms of what's best for the whole population. Individual lives are just that: individual. Obviously, the people concerned and their families will want the NHS to pull out all the stops for them. But, the thing is, so does every other individual with a health issue. So the NHS has to look at the big picture and make judgement calls on how the available budgets can be best used to serve the population as a whole.

FyreFly · 08/08/2014 13:55

The trouble is, you have multiple ways of splitting that £90k, and you have to decide what's going to be the best value in terms of impact on peoples quality of life.

A) Spend £90,000 to improve / save 1 persons life.

B) Spend £10,000 (say) to improve / save 9 peoples lives.

C) Put the money towards some staff or expensive equipment, which could help improve / save hundreds of thousands of peoples lives.

When you look at it that way, spending the whole lot on one person doesn't seem logical. Of course, when it's your loved one suffering, no amount of logic will make it seem right :(

dolphinsandwhales · 08/08/2014 13:58

I think foreign aid should be cut and the savings given to the nhs.

Why does the UK give foreign aid to.countries like India and Pakistan, if they can afford space/nuclear weapons programmes then they don't need charity. There are more millionaires in India than the UK.

OneInEight · 08/08/2014 14:18

Hopefully, my bc will not make an unwelcome return but if it did on balance I think it is right that my brother had his multiple surgeries that enabled him to have almost normal mobility in adult life rather than needing a wheelchair, my mother to have a knee replacement so she can enjoy her last years and my sons to have received speech and language therapy rather than me having an extra six months. The NHS has only finite resources and choices have to be made. Am mightily relieved it is not me making the decision though.

MorphineDreams · 08/08/2014 16:58

“Years ago, death was considered a natural part of life and most people died at home, surrounded by families. Today, most people die in hospitals and death is commonly regarded as a medical failure rather than a natural event.”
Emergency Nursing made Incredibly Easy (2007) Lippincott Williams & Wilkins

Darkesteyes · 08/08/2014 17:14

"1. Charge all in patients for bed and food. All ops, therapies, drugs free of charge. Would have added effect that food and cleanliness might improve too."

And what happens when a persons DLA stops after they have been in hospital for 28 days

Do they pay for it with Smarties after that. Or M and Ms.

CalamitouslyWrong · 08/08/2014 17:16

Yes, morphine. We seem to have arrived at a situation where people assume we're immortal and death is an accident that should somehow be prevented (by medicine and careful risk management).

Darkesteyes · 08/08/2014 17:23

"2. Charge for GP appointments. But abolish prescription charge. Would have added effect of ensuring people who really need an appointment get one. There are a lot of "do not attends" and people who don't need a doctor but are just going for a chat"

An ex employer of mine tried to stop me attending a pre booked appointment on the day. I had tried to book an appointment for my day off but she kept on changing that at short notice too. On the day of the appointment someone else phoned in sick and she told me about an hour before the appointment that I may not be able to go.

So if this was brought in( and I shouldn't imagine) my experience is the only one) then how would you get the employer to stump up the cash if their bad management is going to cost their employee money?

MorphineDreams · 08/08/2014 17:31

No one should have to pay for GP appointments. I've seem some shocking cases of advanced carcinoma in US patients* because they couldn't afford to go to a doctor. Same would happen here.

*via an app called Figure1. Very interesting but not for the squeamish

scousadelic · 08/08/2014 17:41

We seem to have arrived at a situation where people assume we're immortal and death is an accident that should somehow be prevented (by medicine and careful risk management).

This and other unrealistic expectations is one of the biggest problems faced by the NHS. Everybody thinks their illness or their family should be funded. Our local paper recently featured the family of a gentleman in his 90s complaining that the local trust was ageist in not offering him a new, costly heart procedure (major surgery involved). How is the NHS expected to draw these lines, it was set up with no expectation of the advances medicine might make

Cornettoninja · 08/08/2014 17:52

Ultimately I support NICE generally, we don't live in a world of finite resources so there has to be analysis and limits imposed.

It's tricky though because we'll never all have the same agenda and the arguments for and against in every case are complex.

I don't believe that people should be kept alive just because they can be, ultimately we are all going to die and although that goes against every survival instinct we have it's the reality. Even when that reality is unfair or too soon our bodies are designed to cope with so much and there is no drug to cure that.

Truthfully I would like to see much more funding go to palliative care, it's where 85% of us will end up and it's grim. Death plans should be treated with as much reverence a birth plans but there's a good portion of the population who are never so much as properly assisted to document what they want much less get it.

TheSarcasticFringehead · 08/08/2014 17:58

No one should be charged for GP appointments. My brother- who has schizophrenia, although initially he only reported the negative and cognitive symptoms- went to the GP a lot. Mainly because he was feeling down and wanted a talk but felt he had no one he trusted and he had no one to talk to. He was a skint ex addict (should he pay for his treatment then?) with no home and no prospects of a job. He would not have been diagnosed and given help which enable him to have a partner, step children, a job and being able to afford basics like rent if he had had to pay.

BarbarianMum · 08/08/2014 18:00

I don't think anyone should pay for GP appointments or those with a consultant either tbh. I could live with people being fined for no shows though.

Nomama · 08/08/2014 18:03

As someone upthread has already said (sorry, I forgot whilst reading on) NICE has said no because the manufacturer has refused to compromise on the unit cost for the drug. If Roche want to supply the UK they will have to negotiate a lower price.

For years the NHS had a very good purchasing policy, somewhere along the line it became fractured, I think the Thatcher years decentralised purchasing to give each authority control to spend on what it needed. Since then drug costs for the UK have sky rocketed. The disparate parts of the NHS had less push power than most 3rd world countries and we paid premium prices for many years after other European countries negotiated discounts.

There has to be years of high prices, drug companies put hideously high figures into developing drugs. But the UK has long needed to flex its elbow to get the best deals. That is part of what NICE does.

The meeja however, have a different take on this, obviously. Sad stories written specifically to make clear the individual loss sells papers.

Catzeyess · 08/08/2014 18:07

Sad that the nhs can't afford everything. But Yabu, that money could be put to far better uses than extending one persons life (possibly) by 6 months

Pharmagrass · 08/08/2014 18:27

I've name changed for this thread. I worked in oncology for a major manufacturer, selling chemotherapy to the NHS. It was my job to maintain the price of the drug and sign off discounts. I was and still am very good at my job. And time and again I'd come up against decision makers with no experience of sales and marketing, how they were being sold to, and how we withheld discounts. The overall price was set at our global headquarters but we were incentivised on how much we sold and how much was used.

The NHS has got its act together a bit with centralised purchasing/PASA but still is putting its faith in underpaid badly trained managers and then exposing them to sharks like me.

The year I left (to work for a charity!) the bonuses for the top chemo sellers were £37,000 per rep on top of an average salary of about £55k + 20% ish bonus. And we were a relatively small firm selling a well established drug. Those shifting more targetted therapies have far more money to throw about. And the most repellant thing of all was the way in which the sales force was motivated to sell. The jobbing reps weren't exposed to the balance sheet and the POR figs and were told they were doing cancer patients in the uk a massive favour by getting out there and talking up the drug. The company's net profit on that line was 74% Shock and that's of course after all the promotion costs are covered .

It's morally indefensible.

Pharmagrass · 08/08/2014 18:34

And the answer? Pan European pricing.

Flangeshrub · 08/08/2014 18:38

thegreylady I'm sorry if that's how you read my post. I certainly do not for one minute think that you caused your BC, or anyone else did, for that matter. I was merely playing devil's advocate by mocking those that felt that people who undertook certain behaviours should 'pay' for their problems and how complex 'health' is. I hate apportioning blame.
I hope you stay well Flowers

Pharmagrass · 08/08/2014 18:44

Roche are being coy about their pricing because I strongly suspect that they'll have offered some sort of a scheme where the NHS only pays for the patients that respond, but is based on a minimum commitment number of patients.

I'd bet hard cash on this.

Cornettoninja · 08/08/2014 18:54

It's the game though isn't it pharagrass? Makes you wonder as to the actual initial source of the story

This thread made me interested enough to look up how NICE actually consider a drug - apparently their guidance went to consultation in May and their criteria will probably change in the autumn.

There's some interesting stuff on their website. The citizens council report for this year is pretty interesting for even a pleb like me. The question they were asked to consider was ' what are the societal values that need to be considered when making decisions about trade offs between equity and efficiency '

Nomama · 08/08/2014 18:56

I know one of those managers, Pharmagrass, and you could have used quite a few more words to describe how utterly bereft of a clue she is. She has asked for training over and over again... and she gets keelhauled if she misses a bargain....

Thanks for the additional possibilities, I knew something like that is going on, but have never known the price structure possibilities.

Nomama · 08/08/2014 18:57

Yes, and the game is Mexican Standoff: Roche: NHS: government

Nalia · 08/08/2014 18:58

I do think it reasonable to cut funding for IVF to fund cancer treatments and/or cancer research. IVF is a choice, infertility not life-threatening, other options exist (adoption). A person can't choose another option in cancer.

Funding should be used to CURE conditions and take the pain out of dying for the uncurable. Priority to children of course.

Disagree with this because cancer can't ever realy be 'cured', though treatment can induce remission. Putting people in remission should be a priority despite not being a cure. Also, priority should go to those who need it most, not on the basis of age. Children and adults should have equal right to treatment and nether group should be given priority to access to treatment based on anything other han immediate need.

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