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"It seems like a money-saving exercise," she said. "If a patient dies, tough."
November 17, 2008 9:27 AM   Subscribe

£35,000-a-year kidney cancer drugs too costly for NHS: Sutent offers to extend a kidney or GIST cancer patient's life by about 26 months, but the British NHS refuses to fund it, citing "marginal benefit at quite often an extreme cost."
posted by anotherpanacea (47 comments total) 1 user marked this as a favorite

 
NewFilter? You realize that the NHS probably evaluates a few hundred drugs a year and rejects a lot of them on this same basis, right? Why is this post interesting at all?
posted by GuyZero at 9:35 AM on November 17, 2008 [1 favorite]


Same with Herceptin and the Alzheimer's drug of which I cannot recall the name.
posted by mippy at 9:37 AM on November 17, 2008 [4 favorites]


First link claims, "Although they can extend life by up to six months..."

Big difference in numbers there. Of course the second link is to wikipedia, so is probably the more definitive link.

Even at 26 months, this does seem like too high of a cost. At some point ou just have to say, "Well that sucks, but that's life." We all die. It's just a matter or how and when (and at what cost).

Preservation of life is admirable, but not at the expense of quality of life and society. Sounds like they looked at these factors and made the right call in this case.
posted by cjorgensen at 9:41 AM on November 17, 2008


Well I suppose the marginal benefit calculations would have to depend on the patient's reaction to being told that you're going to let them die because you think it's more cost effective that way.

I can assure you, in my particular case at least, by the time I finally died everyone would understand that it would have been far, far less expensive to just cover the drug. They would go on realizing it for years after I was in the ground.
posted by Naberius at 9:43 AM on November 17, 2008 [6 favorites]


They probably made the right call with the Alzheimer's drug. It marginally slows progression and shows some improvement on some clinical tests. It doesn't seem to keep people living independently longer.

And once someone is demented, is slowing progression really a good thing? Obviously, preventing someone from becoming demented is a good thing. Keeping someone able to live at home longer is a good thing, though some would argue that stretching this process out is never a good idea once they are already pretty well dependent. But living longer while demented? Most people would say no.

Would you want a longer life in a nursing home in diapers? Preventing the diapers while still completely out of your head might be good-- but slowing the period in which you are gaga and incontinent doesn't seem to help anyone but those who make money caring for sick people.

The NHS rations. But unlike the U.S., it rations rationally-- or at least attempts to do so while we just pretend we're not.
posted by Maias at 9:48 AM on November 17, 2008 [1 favorite]


Well I suppose the marginal benefit calculations would have to depend on the patient's reaction to being told that you're going to let them die because you think it's more cost effective that way.

I believe that there is no law preventing you from buying the drugs yourself. Perhaps a NHS oncologist will chime in to correct me if I'm wrong.
posted by GuyZero at 9:48 AM on November 17, 2008


As GuyZero points out, this happens a lot, because the NHS (actually NICE) has to make cost-benefit analyses about all new treatments. A more interesting development is that the British government has lifted the ban on "top-up" medication, so that it will in future be possible to buy expensive treatments like this privately (or through insurance) without forfeiting the free NHS care. I.e. the situation described in link 6 -- where a patient has to choose between all-private and all-NHS care -- will no longer happen.
posted by beniamino at 9:48 AM on November 17, 2008 [3 favorites]


As long as you're cool with being the one to turn away the 1,000 other patients with more treatable conditions who could have been helped with that money.
posted by specialfriend at 9:50 AM on November 17, 2008 [16 favorites]


These stories appear semi-regularly in the British press and I've read allegations that they're largely due to the PR departments of the pharmaceutical companies stirring up false controversy to try and put outside pressure to influence the outcome of NICE and increase sales on their hugely expensive drugs. This is especially clever as it works around the fact that direct-to-consumer advertising is banned in the UK by feeding the stories to newspapers and relying on their woefully poor scientific coverage instead.
posted by HaloMan at 9:52 AM on November 17, 2008 [3 favorites]


This is the price we pay for a system where everyone has basic health cover. NHS funding is not some cornucopia. Outside the big urban centres, it is relatively easy to get a GP appointment, a dentist, a family planning clinic, or eye test etc., etc., etc.,(more or less free except for my taxes) but the cost of millions of people getting these basic services is that NICE turns down some of these life-extending drugs.
It is less easy to get the more complex treatments, help and support for the mentally ill, social workers for families in need.

This week in the UK if you asked a GIST cancer patient to forego one year of costly treatment if that money would fund a social worker, and that 10 patients foregoing this treatment might, just might, prevent a Baby P case or another Victoria Climbie. I dunno. Am I completely naive to think that some people would see that as a better use of scarse resource?
I used to work with quite a few patients with end stage colorectal cancers and quite a number of them would make that choice quite easily. Like Hannah Jones, a lot of people with end stage Cas think more about quality than quantity.
posted by Wilder at 9:52 AM on November 17, 2008 [3 favorites]


From the last link: Kidney cancer sufferers taking the drug had a median survival rate of 26.4 months, according to a study presented at the American Society of Clinical Oncology in May.
posted by anotherpanacea at 9:55 AM on November 17, 2008


As long as you're cool with being the one to turn away the 1,000 other patients with more treatable conditions who could have been helped with that money.

Yeh, this is ethics 101 shit. In those classes everyone's all "save 10% of cancer patients for x months or 20% of Aids patients for y months ... ooh, that's hard". But Nice has to do it regularly, while fending off nonsense whipped up by the drug companies as HaloMan says.
posted by bonaldi at 9:56 AM on November 17, 2008 [2 favorites]


Oh, and the Wikipedia article linked to reads to me like it says that it increases lifespan by 5-6 months compared to Interferon Alpha, not 26 months as stated by the OP, which correlates with The Times article and the comments of Peter Littlejohns, the NICE director.
posted by HaloMan at 9:58 AM on November 17, 2008 [1 favorite]


Sorry, on preview (y'all piled on so quickly!) I see that I'm not being naive. Phew! Now if only Metafilter ran the recruitment to Medical Training in the UK, we could all rest easy in our beds at night!

There are still really egregious examples of post-code lottery in the UK, where people living in one area served by PCT x get treatment not covered by PCT Y, although the same patients may live a few miles apart. But that too is changing
posted by Wilder at 10:00 AM on November 17, 2008


anotherpanacea: That figure alone is meaningless since there's nothing to compare it to - for example, the median lifespan of those who take the current, presumably cheaper, treatment. It's not 26.4 months longer.
posted by HaloMan at 10:03 AM on November 17, 2008


In 2007, the NHS spent an average of £1725 per person. Thus, £35,000 is equivalent to just over 20 average patients.

Futhermore, multiple studies have found that Sutent gives only about .6 Quality-Adjusted Life Years (~7 months) compared to the next best therapy. QALYs gained over alternative therapies are a much more useful metric than absolute survival rates.

Demand for (affordable) healthcare usually outstrips supply, and I find it entirely believable that the marginal cost of approving Sutent outweighs the marginal benefit. I'm prepared to be shown the error of my ways, but at the outset I find the decision not to approve neither outlandish nor outrageous.

I'll also note that insurance companies here in the US do the same cost-benefit analyses, except that they have to factor in the insurance company's profit margin and the whole process is opaque, unlike the NICE's comparative transparency.
posted by jedicus at 10:08 AM on November 17, 2008


They probably made the right call with the Alzheimer's drug. It marginally slows progression and shows some improvement on some clinical tests. It doesn't seem to keep people living independently longer.

And once someone is demented, is slowing progression really a good thing? Obviously, preventing someone from becoming demented is a good thing. Keeping someone able to live at home longer is a good thing, though some would argue that stretching this process out is never a good idea once they are already pretty well dependent. But living longer while demented? Most people would say no.


I'm a full-time caregiver for a parent with senile dementia. Any treatment that means mom recognizes me, knows my name and knows that I love her, even if it just gives us one more day, is worth it.

I'm extremely uncomfortable with anyone determining another's quality of life. Mom would forget to bathe and forget to eat if I weren't here to help her. But she still smiles when her cats jump in her lap, she still likes to look out the window and watch the birds, and she still looks forwards to walking to the mailbox every day (sometimes 15 or 20 times a day...).

Taking away the medication that gives her the opportunity to draw from her life what few pleasures she has left seems cruel and arbitrary. Her future is going to be horrible enough -- better to string together a few more days, a few more smiles, a few more moments that I will remember, even if she won't.

Of course, all of this is predicated on the fact that she and my late father planned well for their old age. Please encourage your loved ones to research long-term care insurance, to set up a living trust, and to establish a relationship with a physician familiar with the problems facing the elderly.
posted by BitterOldPunk at 10:27 AM on November 17, 2008 [2 favorites]


Sorry for going off-topic in a thread about health care funding in the UK. My circumstances and advice are specifically related to the US system, which is for the most part a steaming pile of gold-plated shit.
posted by BitterOldPunk at 10:29 AM on November 17, 2008 [1 favorite]


This isn't a private/socialized health care issue. This is a "public health" issue: decisions like this have to be made by societies in order to decide where to spend each million dollars.

Logically, you spend it where it will save the most lives not where it will extend one life the longest.

Isn't that common sense? Imagine a society that worked the other way!

It seems to me that anything else is just heartstring-anecdote trying to trump rational thought.
posted by rokusan at 10:36 AM on November 17, 2008


I'm a fan of the NHS. On a slightly unrelated note, I always wonder how much it costs to mount large scale rescue operations when the chances of finding someone alive are, say 5%. Do rescue services get allocated budgets or use budgets with a similarly cold, rational analysis of cost v reward? Does a bean counter somewhere work out that if they scrapped the air ambulance, they could fund a bunch of lifesaving drugs for some unfortunate people, or we as a society consider trauma victims in an entirely different way to patients with chronic or terminal diseases?
posted by MuffinMan at 10:38 AM on November 17, 2008


I'm sure you can buy Sutent from the company direct if you want? Nationalized medicine shouldn't mean the taxpayers pay such that everybody lives as long as possible regardless of cost.
posted by Meatbomb at 11:04 AM on November 17, 2008


These stories appear semi-regularly in the British press and I've read allegations that they're largely due to the PR departments of the pharmaceutical companies stirring up false controversy to try and put outside pressure to influence the outcome of NICE and increase sales on their hugely expensive drugs.

In that case perhaps someone should do some investigative journalism into how drug companies set their prices.
posted by orange swan at 11:13 AM on November 17, 2008 [1 favorite]


Oh, I'm sure every HMO in the US covers the cost of this drug. And for those without health insurance, emergency rooms are probably giving this out to anyone who drops by.
posted by snofoam at 11:16 AM on November 17, 2008 [6 favorites]


do some investigative journalism into how drug companies set their prices

what the market will bear, baby, what the market will bear.

I remember thinking how Medicare Part D was a strange policy departure for the Bush admin to take. Then some months later I realized it was just price supports to big pharma and it all made sense.
posted by troy at 11:38 AM on November 17, 2008 [1 favorite]


I'll just point out that sutent is a second-line therapy in GIST patients who have failed gleevec (gleevec is standard-of-care and first-line GIST therapy). So this hand-wringing is only for a fraction of those patients with a GIST who have failed the first-line therapy, gleevec, or are otherwise resistant. I would, however, be shocked to discover that NHS does not cover Gleevec.
posted by i_am_a_Jedi at 11:40 AM on November 17, 2008


I'm sure you can buy Sutent from the company direct if you want? Nationalized medicine shouldn't mean the taxpayers pay such that everybody lives as long as possible regardless of cost.

The NHS will happily let you do that, but in many cases it then stops paying for all your other treatment as well.
posted by bonaldi at 12:25 PM on November 17, 2008


'At this festive season of the year, Mr Scrooge,' said the gentleman, taking up a pen, 'it is more than usually desirable that we should make some slight provision for the Poor and destitute, who suffer greatly at the present time. Many thousands are in want of common necessaries; hundreds of thousands are in want of [new kidneys], sir.'

'Are there no prisons?"

'Plenty of prisons,' said the gentleman, laying down the pen again.

'And the Union workhouses.' demanded Scrooge. 'Are they still in operation?'

'Both very busy, sir.'

'Oh. I was afraid, from what you said at first, that something had occurred to stop them in their useful course,' said Scrooge. 'I'm very glad to hear it.'
posted by blue_beetle at 12:27 PM on November 17, 2008


I'm a fan of the NHS. On a slightly unrelated note, I always wonder how much it costs to mount large scale rescue operations when the chances of finding someone alive are, say 5%. Do rescue services get allocated budgets or use budgets with a similarly cold, rational analysis of cost v reward? Does a bean counter somewhere work out that if they scrapped the air ambulance, they could fund a bunch of lifesaving drugs for some unfortunate people, or we as a society consider trauma victims in an entirely different way to patients with chronic or terminal diseases?

My understanding is that in the UK those kinds of things are actually volunteer charities. I know this is the case for their sea rescue. I'm pretty sure their calculations are more along the lines of whether they can safely continue to search and if they can they do. I've always been a bit shocked that it ran as a charity.
posted by srboisvert at 12:34 PM on November 17, 2008


"Oh, I'm sure every HMO in the US covers the cost of this drug. And for those without health insurance, emergency rooms are probably giving this out to anyone who drops by."

I'm sorry, snofoam--you're being ironic, yes?
posted by paddbear at 1:00 PM on November 17, 2008


A the Green Man (srboisvert) search & rescue are charities supported by the Navy & Air Force where needed. Locally here in Hastings I've been involved in fund-raising for the lifeboat services and it is run on a wing and a prayer. Having said that volunteering is a way of life here, and some very experienced people spend their "golden years" doing quite stressful work.
posted by Wilder at 1:04 PM on November 17, 2008


sorry, that should read... As the Green Man said....
I'm watching the Panoram investigation into the Baby P case and I don't mind saying I'm crying my eyes out.
posted by Wilder at 1:14 PM on November 17, 2008


Out of curiosity, I looked up how much the drug would cost under my PPO. Apparently a 28-day supply would cost me $10 (after my $100 deductible is met), and the health plan would pay $1957. Whoa.
posted by grouse at 1:21 PM on November 17, 2008


BitterOldPunk, are you saying that one of these meds can actually give you extra days where Mom recognizes you? Because I don't see any evidence of that being the case with the current generation of Alzheimer's meds... if there was such a med, obviously, it would be helpful. But from what I know of current meds, they seem to show improvement in clinical trials on certain tests, but not much improvement in real world anything. Of course, it could be the case that there are some strong responders who are getting washed out by the drugs not working for most people... and that's going to be the real difficulty with expensive drugs and rationing until there's a way to find out who will respond well to what.
posted by Maias at 1:35 PM on November 17, 2008


Oh, I'm sure every HMO in the US covers the cost of this drug. And for those without health insurance, emergency rooms are probably giving this out to anyone who drops by.

Well, you know, if you're interested in knowing whether this is actually the case, it's not too tough to look it up. You could go here, for example, to check (that link is to D.C., but you could flip it to any state).

Interestingly, randomly clicking through the non-Medicare plans, it looks like most health care plans do cover Sutent, and cover it at a mid-level copay. Even more interestingly, the Medicaid program covers it at the lowest copay possible--that'd be the health care program run by the state that provides care for the indigent and disabled.

One of the only ones I could find that didn't cover it was Kaiser. That doesn't particularly surprise me, though, as comparisons of Kaiser and NHS have found that the two systems have pretty comparable costs (although Kaiser evidently scores better on service and patient satisfaction, which might surprise some of their patients). Kaiser is one of the few HMOs around that follows the model of national health care systems in figuring out what to cover based on cost-effectiveness.
posted by iminurmefi at 1:55 PM on November 17, 2008


My dad is going on 4 years with with kidney cancer in large part due to Sutent. I'd say it was worth every penny, but, I don't know what we'll do when his health insurance runs out.
posted by trbrts at 3:42 PM on November 17, 2008


I'll just point out that sutent is a second-line therapy in GIST patients who have failed gleevec (gleevec is standard-of-care and first-line GIST therapy). So this hand-wringing is only for a fraction of those patients with a GIST who have failed the first-line therapy, gleevec, or are otherwise resistant. I would, however, be shocked to discover that NHS does not cover Gleevec.

For what it's worth, the Australian PBS appears to cover Glivec (as an authority required benefit) but not Sutent.

Drugs are approved for PBS by the Pharmaceutical Benefits Advisory Committee (PBAC). PBAC considers many issues when determining whether a drug will be subsidised, in order to best spend the people's money. Drug company's don't like it, as the PBS uses its buying power to negotiate lower prices, and will refuse to list drugs that do not provide sufficient benefit. Non-listed drugs will get essentially zero sales within Australia.

There are many stories of drug companies using the media to pressure Government and PBAC. Here is a short story on one such instance. The general approach is to flood the media with stories about how the Government is refusing to fund a life-saving drug. Generally the current affairs shows will have interviews with a dying-mother or two. Public outcry will then cause the Government to overturn PBACs decision.

Of course no mention is made of the fact that the price being demanded by the drug company is all most always the reason a drug is not listed. Basically for a drug to be listed PBAC look at price and how well it works compared to the current drugs, if it works 10% better then they'll pay 10% more (obviously this is a vast simplification, but that's the basics) so a new drug that works 10% better but which costs 800% more than the current treatment simply won't be listed.

The satirical Hollowmen actually did an episode which mirrors what happened with Herceptin, where PBAC rejected it and the Government ended up setting up a seperate fund to cover it, outside of the PBS, after a big media push. Obviously even the brilliant guys at Hollowmen can't make this stuff up.
posted by markr at 3:56 PM on November 17, 2008


The episode is "Wonder Drug", season 2, episode 3 for anyone interested. And it's The Hollowmen.
posted by markr at 4:00 PM on November 17, 2008


So.... why not just eminent domain the IP? Britain already has a nationalized health care system why not take it to the next level?

There is something wrong about letting people suffer because they can't afford the market price of a drug when they could probably afford the marginal cost of producing the drug, right?
posted by Wood at 4:50 PM on November 17, 2008


^ communist
posted by troy at 5:30 PM on November 17, 2008


So.... why not just eminent domain the IP? Britain already has a nationalized health care system why not take it to the next level?
Some of the big drug companies are British (eg GSK).
posted by bonaldi at 5:52 PM on November 17, 2008


There is something wrong about letting people suffer because they can't afford the market price of a drug when they could probably afford the marginal cost of producing the drug, right?

So the researchers should just work gratis? The marginal cost of producing the drug is no doubt very cheap. Despite the fact that pharma companies spend more on marketing than R&D, it still remains that a fairly large chunk of their budget is R&D. Without a return on investment there's no reason for these people to enter into pharmaceutical research and there would be no drugs in the first place.

It's evil but it's the lesser of two evils.
posted by Talez at 6:20 PM on November 17, 2008


So the researchers should just work gratis?

It's worth considering how much research is actually performed by drug companies; it's surprisingly little, IIRC. The overwhelming amount of their budget is marketing of one form or another, much of the basic research is in universities, medical trusts, and so on (which, of course, are often funded by charities and the taxpayer...)
posted by rodgerd at 8:49 PM on November 17, 2008 [1 favorite]


So the researchers should just work gratis?

Not what I'm saying. I'm talking about the fact that we have a Pareto suboptimal situation. Is there no way to give the researchers more than they are currently receiving but less than the "market" value for these presently unserved unfortunates?
posted by Wood at 8:54 PM on November 17, 2008


Yes, there are lots of other ways to finance drug R&D. Here's one way.
posted by grouse at 9:36 PM on November 17, 2008 [1 favorite]


It's evil but it's the lesser of two evils.

false dichotomy much?

Ideally, in troy-world, pharmaceutical researchers should get paid by how much suffering their work removes from the world.

Unfortunately, that's not what the free market is chasing.
posted by troy at 11:13 PM on November 17, 2008


The NHS rations. But unlike the U.S., it rations rationally-- or at least attempts to do so while we just pretend we're not.

Well said Maias. Everyone deserves basic health care but our health care system is falling apart pretending that we can give everything to everyone. The United States places an irrational emphasis on extending life - no matter the cost to society, the family, or patient dignity.
posted by If You Ain't Dutch, You Ain't Much at 5:49 AM on November 18, 2008


The United States places an irrational emphasis on extending life

And a large weight on moral hazard - if you get sick, it's your own damn fault.
posted by GuyZero at 9:11 AM on November 18, 2008 [1 favorite]


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