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

[suziepra]

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!

The NHS operates on a triage system. They'll spend where there's the greatest quality and quantity of life. Sometimes the people who decide this get it wrong. Sometimes we end up with a 'postcode' lottery system.

The companies like to make their money and no they can in places internationally where people pay for treatments, they are a business and so act as one.

It's shit when/if you are affected by this and it does fuck me off that they'll not fund 'better things' but pay billions for a crappy train system that few will afford, will cause major issues and only shave 20 minutes off a journey.

Let's nationalise pharma companies? Really?
A) nationalisation of our health service is the whole reason money is short and the whole reason we're having this debate. Prices may drop if we nationalise but do you really think the govt will stump up millions in clinical trials given so many drugs fail?? I've worked in clinical trial funding for over a decade. I know the huge financial risks being taken. No new drugs will be discovered and production of niche drugs will be wound down as too expensive. If you're lucky there'll be one drug for cancer, one drug for depression, one drug for bacterial infections - why waste money on any more? It's tough if it doesn't work. We'll end up being prescribed 2 paracetamol and a rest for everything from a headache to cancer.

B) Roche isn't British, like most drug companies aren't British. They sell drugs to approx 200 countries around the world. How do you propose the UK nationalises them?

It's very easy to bandy about crowd-pleasing statements like that, but they are trite, show complete ignorance and solve nothing. Lucky we've got NICE to actually do some thinking for us.

Fascinating thread.

Returning to the original q - yabu

There is not an infinite pot of money and it has to be shared out fairly, not just to those who shout loudest. NICE & the NHS is a pretty good way to do this - maybe not perfect but I've not come across any better system.

"There is no point looking at pharma profits without also looking at turnover. It is turnover that is huge and I gather the margins are actually pretty small. They have a window of 10 to 20 years to recoup ALL their R and D costs, not just for that drug but for every other one they trial that does not get marketed. "

In my experience, the margins are also enormous on any of the major therapeutic areas, and if you've also got the leading drug in a class ( think Prozac/Zantac etc) you're laughing. I don't think I ever worked on anything with less than a 30% net profit and that's after you've paid every scientist and rep, advertising agency and PR company.

Anything with a lower net profit got sold off or was just pushed in bulk via the wholesale team as a bundle.
I can't think of the last time a drugs firm went bust, can you?

I've been living, for the most part very well, with breast cancer and secondaries since 2003. This drug is not suitable for me but yes it should be available. I ticked all the bloody healthy boxes, slim, breast feeding young Mum, non smoker, no alcohol. The NHS waste millions on all sorts. YANBU.

They have a window of 10 to 20 years to recoup ALL their R and D costs

And more to the point, marketing costs...

And, much more to the point, to feed the company profitability.

They are of course in business to make money. They aren't planning to just "cover costs."

Actually I think the marketing is worse. Why do you need to market a drug. It should be judged on its merit, but because you've been sold it over other alternatives.

It ends up being not about whats in the best interests of the patient, and thats what we should all be focusing on, not the latest hype about a product which may or may not deliver the results people want.

To do it, where people are vulnerable and desperate makes it all the worse.

How do you communicate the benefits of a drug over alternatives WITHOUT marketing? That's essentially all marketing is.

I find some of the comments really difficult to comprehend.

I understand that it's an emotive subject, but the NHS has finite resources, it cannot provide every drug or treatment that every patient might want or may potentially benefit from. It just can't.

Even with extra funding, better management or reduced drug costs, people would still miss out. Don't get me wrong- with these changes the NHS could do more, but some would still miss out.

Therefore, a way of deciding what is most "equitable" has to be decided even if it is not QALY's.

Oldfarticus- I am also a doctor. I don't relish the thought of having to rule out a possible treatment as it is not funded and thankfully I can't think of a time I've had to. Like you, I am not "comfortable" with "putting a price on a life". I don't think many people "like" the idea. But I do recognise that the NHS must set limits, there is no choice. Their are limits in any system.

Of course everyone thinks treatments for the illness they or their loved ones suffer from should be funded without question, whatever the cost. That's completely understandable- and problematic. You want whatever it costs to be spent on your friend and people like her. People whose loved one suffers from any terminal or potentially terminal or quality of life limiting illness wants the same. In an ideal world, that's exactly what we'd do.

But given resources are finite what do you suggest? Even with a insurance bases system like in the US, someone (namely the insurance companies) decide a cap on what they will and won't pay for. In Europe, they still put a cap on what they will pay so not all drugs or treatments are available.

As for some of the other comments, I'm baffled. "Just print money"- I can't believe anyone really thinks that is the solution.

"Let's nationalise pharma companies". Really? You can't nationalise pharma companies, apart from the legality of doing so (which I recognise could be addressed by parliament if required)- many aren't actually UK companies. Any whiff of attempting to nationalise their assets unilaterally and the companies will simply relocate, taking their jobs and investment in the UK with them. The phrase "cutting your nose off to spite your face" springs to mind.

Not only would we have lost the jobs etc, we simply don't have the budget to fund all of the research, the phase I and phase II trials etc that are done by all the pharmaceutical companies. We could certainly fund a lot more than we do at present, but not the billions upon billions these companies spend (if you take the large ones like Roche and AZ, and also smaller niche ones).

I think the villification of pharma industry is only partially fair. Their margins are indefensibly high on many drugs, and there is certainly room for squeezing that. But in many cases they have invested heavily in research, technology etc, and also have to make up for the money spent on drugs that didn't make it through the trials etc. They are not charities, and do have to make a profit- but can and should do so in a more justifiable manner.

But the marketing thing is a recent phenomenon as they weren't allowed to advertise in the UK until about 2004.

We are, apparently, woefully behind more civilised countries like America!

Sorry, I should have clarified, DTC marketing - direct to customer...

Iamsoannoyed I agree.

What I also find hard to grasp is that people even offer such ideas as "solutions" and it makes me wonder how much their view and understanding of the world differs to mine.

I remember a thread on here years ago where a poster had been approached to take part in a clinical trial related to a condition she had. She wasn't sure whether to go ahead but commented "if my taking part saves one poor dog or cat from experimenters then it's worth it."

I had to shut my laptop and go for a walk.

How do you persuade people to buy an inferior product over less expensive alternatives WITHOUT marketing? That's essentially all marketing is

Anyone considering 'charging for x y z' needs to think about how you would actually collect the money.

Chemists have a till and sell things so collecting money is not that difficult.

Charging for food and drink is different, treatment can include food and drink how does the person pushing the tea trolly know who needs to pay for their cup of tea and who is being treated for hypothermia and the tea is part of the treatment?

How are you going to encourage someone to drink more if they have to pay for the drinks?

If you charge for food are people going to insist on bringing their own food in? And if someone brings in food and it has not been cooked properly and leads to one person getting food poisoning how much is that going to add on to the NHS costs?

One problem NHS managers have is that they do not always understand the consequences of their actions.

My local hospital have brought in charges for disabled parking spaces, but the payment machines are not accessible. I am having a long running argument with the NHS manager over this, I say if you want me to pay then you need to make the machine one I can use, asking someone to help is degrading.

because I am on a low income I am eligible to claim travel expenses. So I go to an appointment by cab, after I have been a member of staff calls Brian who dries the internal ambulance, Brian takes me to the office, at the office I present my proof of appointment, costs and proof of entitlement.

Recently they have cut down on paying for a taxi unless your GP says you need to, my GP does say I need to but I had to visit and have the letter written for me.

I was always entitled to claim travel but when I could park I never did.

I now do claim. The amount I claim is increased because I use a cab. My appointments all involve interactions with three members of staff who all have to be paid. The internal ambulance needs upkeep.

I really don't think the hospital is saving anything.

" Nomama
But the marketing thing is a recent phenomenon as they weren't allowed to advertise in the UK until about 2004."

Even now BigPharma can't advertise prescription only medicines direct to consumer, and the regulations around promotion have been hugely tightened. Long gone are the days you could buy a GP a full set of Encyclopedia Britannica for his kids at college, or take him on the sauce in Amsterdam! Now the promotional items must be for genuine use and be no more than about a fiver a pop, so pens, basically.

We had a promotional budget per rep and if we didn't get it spent it was a disciplinary offence so there was always pressure to get prescribers and influencers booked up for conferences and speaker meetings.
My friend cocked up and still had £5k to shift in the 3 weeks before Christmas and phoned me in tears, needing help. We ran around a big local hospital and invited EVERY member of staff for dinner at a posh restaurant. Didn't matter who they were, we just needed bums on seats. It was one of the best nights ever, and the anecdotes from the lads in the mortuary department (who were chuffed beyond belief to get anything spent on them!) will stay with me forever!
We were still a bit short on spend so we bought a couple of cases of wine too and then got the restaurant owner to write the bill in an expenses friendly way!

"Add message | Report | Message poster PigletJohn Sat 09-Aug-14 13:01:09
How do you persuade people to buy an inferior product over less expensive alternatives WITHOUT marketing? That's essentially all marketing is"

Yep!

It is difficult if not impossible to make this sort of decision as it affects people's lives. There will always have to be choices in the NHS as they can't fund everything. If this was a cure there would be no question. But it's not.

YABU

PigletJohn one of the ways we used to shoe in a product was to offer to supply a member of staff for free. "Pump priming" was the term. So for example we might supply a specialist nurse to a department but put her through our training first. She would be selected by the hospital and paid for via an agency. Then when whatever contract we were after came up for tender, or a new drug needed to be added, we would gently point out our existing investment in the hospital and ask them to consider how life might be without her.

Nice eh?

Apparently life does have a price. Try telling that to the 34 year old mother of two tiny children, aged two years and six months. Say it to her face. "Your life isn't worth £90k. The public purse doesn't deem you worthy of a another six month with your two small children, who, when you die, will be too young to remember you."

I am that mother. Different type of cancer, but same outcome if the NHS decides potential life extending drugs are too expensive. I know the NHS isn't a bottomless pit of money. I'll just get on with dying, quietly without proper palliative care, so as not to be a financial burden on anyone else.

The Wolverhampton refuge system has had its budget cut by £300,000 pa. This will leave more people vulnerable to death or serious injury from domestic abuse.

I wish the country could afford everything, but it can't.

Viviennemary "cure" is hard to define bizarrely. In the vast vast majority of treatment plans for cancer the patient is treated with a combination of drugs and only very rarely with a single molecule. Each one of the cocktail in isolation isn't curative but in combo it is (or is more likely to be.)

And then there are chemo drugs which won't cure, but will shrink the tumours to a point where they can be cut away.

X-post with becca. I'm really sorry for your situation.

I've reached the conclusion national healthcare is a bit of a red herring here. Even with a whole or partially nationalised private system unless you have the cash you wouldn't have access to these new drugs. There's plenty (admittedly a lot if it is anecdotal) of evidence out there from people who live under privatised systems who for one reason or another can't access things.

I understand the reasoning for big pharmaceuticals maximising their profits before their patent runs out, in fairness those reasons are economically sound as a business model, but ethically it's shit.

Maybe there needs to be another way of doing it. Maximum patent/licence for seven years then a type of royalties system for 50 after? Idk, but there must be a better way to cover the costs of the capitalist parts of the system to benefit wider society...

If only Roche could take a leaf out of Teslas book.