Mumsnet Talk

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

http://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.

Wow, good post, I was expecting another NICE-slating.
I don't know what to say but i agree i struggle to apportion blame to an organisation that tries to please everyone and most of the time succeeds.

Oh, Mr Justabout (despairs) at least you are discussing this over breakfast with someone else for a change!

The way I see it - with a terminally ill parent at the moment - is that actually quality of life is far more important than months per se. The woman on the radio this morning was banging on about how her very poorly mother survived for another four months with this drug - four months in pain, in weakness, probably not a great quality of life. But the daughter was talking on the radio about how precious the extra time was to HER (not her mother, who was incredibly ill throughout). I sometimes think we end up prolonging life for the benefit of relatives rather than the person.

But I don't really know why I am bothering to write this because I tell Mr Justabout the same thing every time he raises the subject. And then I tell him to turn the radio off and look after the children for me instead.

(ponders thread title, "Am I Being Unreasonable to be concerned that most of our intellectually rigorous marital discussions are now conducted via Mumsnet?")

i feel like i'm in the middle of a domestic
<backs out slowly, waving cheerily>

(silence)

<<butts into the justabout breakfast table and nicks toast>>

It's hard to accept that the NHS won't pay for everything - and if you have liver cancer another 6 months maybe sounds like time you're desperate for - and maybe it could possibly be good time - or it could be lousy time but it's still time and surely that is always a good thing? Well no actually it isn't.

We all need enough time to set our affairs in order and come to terms with the ending of life. There is nothing more distressing than a dying person who isn't accepting of that state. I really believe that the NHS has to do a lot more to help people have a good death and paying a drug company an extortionate price for an uncertain outcome would be wrong. I'm a bit surprised that Macmillan have responded as reported so angrily because as they know tvery well treating cancer isn't just about drugs.

(offers spread for toast, hence risking another domestic about the relative value of English and NZ-flavoured Marmite)

Well, yes, that is exactly how I feel, NL, I have been very surprised to notice how much calmer and more peaceful my own dad has been since the consultant told him she didn't want to recommend any life-prolonging treatment (apart from transfusions, which he can stop if and when he wants). I think there was more unhappiness (fear and anxiety) in the trying to gear himself up for uncomfortable/unpleasant side-effects than in the accepting that his life is coming to a gradual end.

A pharma company spends a fortune in developing drugs for the market and it takes years to bring a drug to this point so I can see why they charge so much. A patent is only valid for 20 years as well, so they have a limited amount of time to make their profits from it.

However, why price yourself out of the market?

Surely they would make much more money if they priced it so the NHS could afford it?

presumably they do have a market - private healthcare? other countries? I was wondering the same but they'll price it to maximise profit

Researching drugs costs a lot but I've seen figures to suggest that the developing side -i.e. lobbying regulators and inducing doctors to use their drugs - costs much more the research itself.

I don't dispute that Pharma spends an absolute fortune, but they don't price things to break even over a range of products but instead to make what turn out to be massive profits. The issue is probably that regardless of the quality of the drug, every drug that comes to market is expected to make a target return on investment.

This means that a drug that's only just worth paying for at cost price ends up being made unaffordable by Pharma demanding a lot more than it's worth.

I can completely understand Pharma making massive profits on fantastic drugs that are just revolutionary. It's when they decide to try to make massive demands for drugs that don't work well, don't work for most people (or just don't work) that their demands become unreasonable.

In this case, I think if they'd made a smaller demand then they'd have made slightly smaller profits and people would have received the drug.

I have heard complaints about how much it costs to do R&D. What I'd love to hear from the pharmaceutical industry is exactly what the return on investment is that they need to make in order to be willing to treat dying people. 15%, 20%?

The systems are also very different country by country too. In some other European countries they will pay for cancer drugs regardless of what the drug companies ask for. Inevitably this either means that people who have diseases other than cancer lose out, or a lot more is paid overall for treatment. The UK faces higher prices because these countries don't look critically at what they're doingg.

A second problem the UK faces is that a lot of other countries look at what it chooses to do - especially those where there aren't the people to go through all the figures that NICE does again. Whilst the UK is only a small part of the global market, it influences what's done in about a quarter of the world. NICE is seen as being a successful regulator (they've got people that go all around the world saying so!), and getting it through NICE means that a lot of places will also say yes and at a similar sort of price.

I think the healthcare system in the States has a lot to answer for. I'm sure they are a pretty big purchaser of drugs such as this.

NICE is successful IMO because they are impartial and make difficult decisions. Herceptin is also an expensive drug, but DOES make a difference and they passed it.

In most of Europe there is an evidence base requirement for funding (I sat through a long meeting last week talking about this), and in many of those, the private sector won't pay until the government do.

The US on the other hand...

Evidence based, and health economics based medicine is hard - no doubt about it. But it has to be applied rigourously to stop us endlessly throwing money into healthcare with no regard for balancing actual benefit v cost

Pass the Cornflakes please

I agree with you entirely. But I suppose that if this is YOUR child/mother/friend then you might argue for it. But yes, I think that the NHS be clear about what it will pay and what it won't pay. This is not NICE/NHS fault, it is the fault of drug companies setting these tarriffs.

I would like to add something intelligent but basically I agree with everything MrJusta is saying I think. I think NICE has been a political masterstroke; it's good to hear that it's well respected internationally as well.

When my mother was dying of lung cancer, her consultant was very cross that NICE had turned down avastin (was it?) for lung cancer patients - he reckoned that it would have been a very effective treatment, and suspected that the pariah status of lung cancer had had some effect on the decision. How transparent is NICE?

But on balance I think it does a horrible job very well.

Interesting what you say about how pharma structures its finances

V sorry to hear your dad is so ill Justa

I agree with Mr Justabout. <runs>

I agree with NICE and mrjusta. In fact, within the story, the only people I would attribute any blame are the drug companies for trying to charge such ridiculous prices for a drug that effectively doesn't work.

NICE is very transparent - you can read all the documents that they considered, what they are measuring etc etc all through the process. It isn't a closed thing either, as there is representation from loads of groups both professional and lay on each working group.

Sometimes its a matter of that there just isn't enough good quality evidence published and it needs a trial to see if the drug is more effective than current standard treatment, or that the evidence is there, but just doesn't show enough benefit for the cost.

and its the latter in this case....not enough value for money.

Very harsh if you have a family member who needs / wants this drug but the line has to be drawn somewhere doesn't it?

NICE cannot, and should not, take emotional stories into consideration.

I think I agree <<dribbles in attempt to think>>

My devils advocate question is - if the drug cost 50p and they declined it, would we feel the same?
Would we still feel it didn't do enough good for those in a position where the easiest/best thing [in society's eyes] would be to gracefully accept fate and bow out of life with dignity. Or would we say 'hey it's 50p, have another 6 months and then bow out with dignity'

I struggle with the money vs life length vs life quality question - although as an NHS worker I don't dispute the need for the reality of the times to be faced.

I am not entirely convinced that Doctors have any specialist training in judging the quality of life of a given person. They are dapper at judging 'quality' of illness, but that is entirely different.

Interesting stuff.

i work with people who work with/for NICE, and have had how and why certain treatments are adopted and other not explained. Whilst you might feel they are wrong and in this i don't think they are when you look at the cold hard facts and figures and the Quality of Life calculations compared to the cost calculations.

The one thing i am truely surprised at is that the drugs company have marketing the drug at this price. Because cost does come into it, and i would hazard a guess based on what i know about the product selection criteria that had said drug cost 50p and probably a bit more it would have been adopted. The drugs company will have had access to approach the same health statisticians as NICE and should have done their sums to price the drug to be accepted.

If the drug costs 50p, and give 6 months extra life at, say, 50% of normal quality of life, then it would be economically worth it.

Doctors don't have to be trained in assessing quality of life - there are standard questionaires which are used in the clinical trials that measure QoL over all sorts of measures. They are quite long, but pretty reliable