NICE turns down "life saving" drug for liver cancer.

[MrJustAbout]

The National Institute of Health and Clinical Excellence (NICE) is getting a kicking - again - for saying no to a new cancer drug called nexavar.

news.bbc.co.uk/1/hi/health/8367614.stm

The drug looks like it costs about £35,000 per year. At one level, this doesn't look like much to "save" a life, although; a) it doesn't work for everyone and b) it doesn't "save" anyone's life but just gives them an extra 6 months or so.

I can understand that people might want to give people a few more months of life. NICE already puts a lot more money into doing this, and they'll pay about twice as much, per month as they normally would to give people a little more life when they're close to death.

In end of life, NICE also requires much worse evidence of benefit in order to pay for a drug. Importantly, you don't need to show, for instance, that drugs acutally give you a reasonable quality of life - just a pulse is enough. Given this, there's no way we can talk about it providing for a good death - indeed, it gives absolutely no value to a drug rid that's associated with better quality of life in those it treats.

If we're going to treat people who are dying differently than everyone else, I would have thought it would be more important to give them a decent life in the time that they've got left rather than any life, just for the sake of living. Is this fair?

So, NICE already pays over twice as much for these sorts of last-chance therapies and requires worse evience but nexavar still doesn't get funded. To me, this says something about just unreasonable the drug company is being in demanding £35,000 per year.

No one really wants to put a price on keeping someone alive at all costs. To fund nexavar means that other people have to have treatment taken away. This means that other people would probably have to die - and more people than we'd "save" for a few months on using nexavar. If two people with inoperable brain cancer die so that one person with liver cancer lives then I really don't see that this would be fair.

Cancer isn't fair - it's nasty and kills those we love. NICE seems to be doing all it possibly can to accommodate cancer treating drugs. I just can't see how NICE can be held responsible for a company demanding a lot more than the NHS can pay. We hear from NICE, we hear from patients, but we never hear from the companies justifying the massive fees that they ask for.

"Especially when you consider that involves setting up 'front' patient groups that are funded by the drug company to press for their drugs?"

Yes, I agree that some tactics are indefensible, and that consumer advertising shouldn't be allowed. Although in this instance Macmillan and the press seem to be doing the job for them, free

But you can't just say "marketing bad - R&D good". The R&D budget is dependent on profits, it's naive to accept that one branch of a company is "allowed" to inflate their marketing budget, yet the pharma arm of the same company is somehow evil for wanting to advertise their product.

If we don't want our health to be governed by market economics then we need to fund university-based medical research better - "simples", as the meercats would say.

"Has anyone asked yet if MrJustabout and Justabouttoturn35 are related? "

I hope not . There are laws against those kind of marriages you know!

well now theres an interesting idea... gosh, do you think we could possibly explain to the politicians that it might be a teeny weeny bit helpful to fund universities to do more medical research?

could you ask them to send some of it to my DH's lab Edam?

[he is a university-based medical researcher about to lose his grant due to the funding drop since the credit crunch]

tyv, is dh going to be OK?

well i think a good death for my mum would have been inextricably linked with a good last few months with the right medication [as well as getting prompt treatment at the beginning of her illness which didn't happen] But then dementia and parkinsons are never going to get enough funding.

But extra squeeze of justa's hand, I do get your POV.

[sorry if I sounded callous before, I didn't mean to]

edam - no, he's probably going to lose his job and have to leave science. Along with most of his colleagues actually.

Academic science funding is ridiculous, IMO.

actually I don't know why I'm saying "probably" - he's definitely going to lose his job.

The only question is over whether he leaves science or not.

Anyway, hey ho - not germane to the debate (except insofar as it bears on the politics of drug research I suppose).

pofaced -

The hope would be that if the drugs worked then that would be borne out by looking at the evidence. If they worked, and the evidence was there then NICE should fund it ... and if the evidence wasn't there then:

a) the drugs didn't work well enough to mean that your mum probably would benefit by more than someone else would were they to get equally costly treatment
OR
b) the company involved didn't do its job properly in gathering the evidence.

It scares me how often the answer is b, and the number of people potentially denied treatment by drug companies who spend millions on marketing but who screw up either their trials or their analysis. There are groups out there who should feel very angry when their potential treatments are denied. As I don't like being sued, I'm not naming names, conditions or drugs ...

For what it's worth, I agree also completely about dementia and parkinsons not getting funding - cancer tends to get a higher priority than it would if we were only interested in health. I hope that this wasn't the cause for your mum losing out on treatment.

Over the whole NHS though, a big cause of people missing out will be where expensive stuff gets given that costs an absolute fortunte but does relatively little - that is, where stuff isn't cost-effective. When NICE says no, it normally means that people keep treatments that can be shown to work!

Oops, "also agree completely"

Sorry to hear about your DH youngvisiter - it's going around a lot within universities at the moment, and not just in science.

Oh, tyv, I'm so sorry about that. Rubbish as we actually do need people doing your dh's job. As opposed to ruddy subsidised city bankers. Grrrr.

Well I'm sure my DH will be ok in the long run (gulp - hope so!) but it is bloody short-sighted.

He trained for 8 years to do his job, and is working in a really valuable area at a cutting edge university. He's invited to speak at international conferences and has published several papers on his research, and he's leaving his current project hanging.

And yet there's no funding for his lab to keep him on. And he's not alone by any means. Practically every week one of his colleagues leaves to retrain as a doctor or a teacher or go into finance.

He doesn't even get any redundancy pay because they are all on short-term contracts.

There's no point in moaning about it - but I don't know where they think the scientists of tomorrow are going to come from with prospects and working conditions like this.

That sucks tyv. It really is crap, for you personally and for the brains, intellectuals and creators in this country.

We are soon to be a nation of service industry slaves. You either buy stuff or you sell it. Nothing in between.