The power of anecdotes

August 28th, 2010 by Ben Goldacre in anecdotes, bad science, big pharma, media, statistics | 53 Comments »

Ben Goldacre, The Guardian, Saturday 28 August 2010

For simpletons and amateurs, there are good research methods, and bad research methods. In reality, different tools are valuable in different situations, and sometimes, even very tiny numbers of people can give you a meaningful piece of information: even an anecdote can be informative.

For example, if you produced a research paper about just two people who had gone into space, in a rocket or in a space shuttle, and then an extra eye had physically opened in the centre of their forehead, I would be concerned. Thats’s because going into space is a very rare lifestyle risk exposure: maybe a thousand people in total. And I’ve never seen a third eye physically open in the centre of someone’s forehead.

In this context, even though there are just two anecdotes, even though they are unsystematically gathered, it’s still interesting information, because the exposure and the outcome are both very rare, and because this is the first information available on the issue. I would want to look into it more carefully, and more systematically, but these anecdotes are still useful evidence.

That was a special case. This week the newspapers were filled with stories about NICE’s recommendation not to fund Avastin, a bowel cancer drug that costs £21,000 per patient, in draft guidance. This drug has been studied in a large randomised trial of 1401 patients receiving either chemotherapy with Avastin, or chemotherapy with placebo.

The trial isn’t perfect – no trial is, you can read the details online –  but it gives the best estimate of the true benefit of this drug, and overall, it shows that Avastin extends survival from 19.9 months to 21.3 months, which is about 6 weeks. Some people might benefit more, some less. For some, Avastin might even shorten their life, and they would have been better off without it (and without its additional side effects, on top of their other chemotherapy). But overall, on average, when added to all the other treatments, Avastin extends survival from 19.9 months to 21.3 months.

The Daily Mail, the Express, Sky News, the Press Association and the Guardian all described these figures, and then illustrated their stories about Avastin with an anecdote: the case of Barbara Moss. She was diagnosed with bowel cancer in 2006, had all the normal treatment, but also paid out of her own pocket to have Avastin on top of that. She is alive today, four years later.

Barbara Moss is very lucky indeed, but her anecdote is in no sense whatsoever representative of what happens when you take Avastin, nor is it informative. She is useful journalistically, in the sense that people help to tell stories, but her anecdotal experience is actively misleading, because it doesn’t tell the story of what happens to people on Avastin: instead, it tells a completely different story, and arguably a more memorable one – now embedded in the minds of millions of people – that Roche’s £21,000 product Avastin makes you survive for half a decade.

Rationing healthcare resources is a soul-destroying and unavoidable horror, in which some people who are dearly loved will always die, and this makes it an irresistible magnet for questionable behaviour from people who are happy to release themselves from the burden of being realistic about difficult decisions.

Journalists can exploit these impossible decisions for outrage, and the pleasure of leading a popular campaign, but so can politicians: the Conservatives in opposition even invented a £50m fund to pay for the drugs that will save your life, in a scheme that is no more realistic than Barbara Moss’s unrepresentative anecdote. With drugs that cost £21,000 per person, your £50m will buy you precisely 2,381 patients on Avastin living an extra 6 weeks, and then it’s gone forever.

£50m clearly gets us nowhere at all. You’re always going to draw the line somewhere, and if you paid £200,000 for 6 weeks of life there would still be more you could do. Whoever draws that line, wherever it falls, is always going to be pilloried and despised. When you’re writing about such an incredibly easy and emotive target, it might be fair to at least use a representative anecdote for illustration, instead of Barbara Moss.


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53 Responses



  1. danielrendall said,

    August 28, 2010 at 12:37 am

    As you say, a few papers have been covering the story this week. I can only assume that they are about to launch a campaign arguing for the tax increases that would be necessary for the NICE to be in a position to recommend funding of drugs in this price range.

    Incidentally, the Express this morning was complaining about anti-obesity operations being available on the NHS while these cancer drugs weren’t. It would be good if someone explained cost-benefit ratios to them some time.

  2. Kimpatsu said,

    August 28, 2010 at 3:33 am

    Why are drugs in this price range? The NHS should retroengineer generic versions of them, because saving lives comes before any profits big pharma wants to make.

  3. Chris Nedin said,

    August 28, 2010 at 5:36 am

    The drug company needs to get it’s investment in R&D back and make money. This drug cost as much as it does because the patient pool is very small (very few to buy it) and there is no chance of repeat business (unlike statins for example – which are the perfect product for drug companies as they don’t cure anything but you have to take them every day for the rest of your life to relieve symptoms.)

    The NHS couldn’t produce generic versions, as the product is under patent, and to do so would put the UK in breach of the TRIPS agreement which protects IP.

    The drug could be made locally in response to a public health emergency, or if the company refused to supply the drug. Neither apply here, the cost in this case does not equate to refusal to supply as the government could buy it if it decided to.

  4. hairyalbert said,

    August 28, 2010 at 9:40 am

    “The drug company needs to get it’s investment in R&D back and make money.”

    I’m not sure of the case with Avastin, but the Pharmaceutical companies make a killing long after their R&D costs have been recuped.

    I used to take Remicade before my doctor told me the hospital could no l;onger afford to give me it. This drug was developed at a New York University (I think) and owned by a company called Centocort. Ten years ago Johnson & Johnson bought Centocort for about $5 billion, and promptly raised the price of Remicade by several multiples.

    Last year alone they made about $5 billion from this drug; their investment has been repaid multiple times yet they still charge about $1000 a dose. And people like me suffer.

    I have every sympathy with NICE and the NHS, resources are precious and you can’t treat everybody. I have very little sympathy for pharmaceutical companies who sometimes didn’t even develop the drug they are charging prohibitive prices for. It’s pure greed.

  5. Trinoc said,

    August 28, 2010 at 10:06 am

    If these newspapers were consistent they should not be screaming for patients to get expensive drugs, but should be telling them to go for some nonsense such as homeopathy or Reiki instead. The number of anecdotal cases of remission would be more or less the same. So would the number of early deaths, but of course the newspapers would not write about those.

  6. skyesteve said,

    August 28, 2010 at 10:11 am

    I know you don’t like personal experience here Ben so suffice to say people will have to trust me when I say I have very personal experience about the whole issue of chemotherapy.
    There are some areas where chemo is very helpful (things like testicular cancer and certain haematological cancers spring to mind) but for a lot of people the benefits are little better than described above for Avastin.
    It’s not just the fact that it may only extend your life by a few weeks – what is the quality of those extra few weeks?
    More often than not chemo makes people feel unwell – nausea/vomiting (which is often intractable); loss of bowel control (and with it loss of dignity); loss of hair and nails; peeling skin; unpleasant pins and needles in hands and feet; etc. Of course, not everyone gets all or even some of these side effects – but the reality is that many do.
    Is it really worth an extra six weeks if that’s going to be the quality of life that accompanies them?
    The NHS has to spend it’s money wisely – it cannot do so on the basis of emotional anecdotes. If the above apparant stance from NICE is true then I for one support it. Would be nice to know where the cost figure of £21,000 comes from though as, to the best of my knowledge, the cost Avastin is about £100 per dose.
    But let’s not forget the other controversy surrounding Avastin:

    www.allaboutvision.com/conditions/lucentis-vs-avastin.htm

    news.bbc.co.uk/1/hi/health/7582740.stm

  7. skyesteve said,

    August 28, 2010 at 10:13 am

    Oops! Sorry for the apostrophe in its! Bad me. Any chance of an edit facility Ben?

  8. hairyalbert said,

    August 28, 2010 at 10:21 am

    Someone else has logged into your computer mate! Either that or you’re doing a Gilligan on us ;)

  9. psybertron said,

    August 28, 2010 at 10:39 am

    Good post Ben. How do you see “good science” incorporating that concept of fairness (in deciding where lines must inevitably be drawn ?)

  10. QuietKnoll said,

    August 28, 2010 at 10:52 am

    Excellent, pithy explanation of the value of anecdotal evidence and of the reasons why it often drives out rational evidence based consideration of health policy. Definitely worth expanding in any sequel to your book.

  11. skyesteve said,

    August 28, 2010 at 11:36 am

    Sorry hairyalbert – come again? (great name by the way)

  12. Mitton said,

    August 28, 2010 at 11:39 am

    I don’t know how many people in my area would benefit from the drug but the local hospital spends well over £60,000 on chaplains, which would certainly provide for 3 of them.

  13. nathaniel said,

    August 28, 2010 at 11:42 am

    Chris, you missed Kimpatsu’s point. He said “this is how it should be” and you replied with “this is how it is.” Morally, the NHS *should* be able to manufacture generics when drugs are this expensive, and I think it would be fairly insane to argue otherwise. Perhaps with the money saved from the public purse, the Government could do its own biomedical research. Intellectual property law should be treated as a tool for encouraging innovation, not as a holy decree that trumps the saving of human lives.

  14. TwentyMuleTeam said,

    August 28, 2010 at 12:50 pm

    Maybe the state should offer the patient a choice: We’ll pay 21K to buy you probably 6 more weeks of life, or you’ll not take Avastin and we’ll pay your estate 10.5K.

  15. Logas2 said,

    August 28, 2010 at 1:34 pm

    The cost of developing new drugs is huge these days. On average somewhere in the region of half a billion to 2 billion dollars and over a decade of intensive research. Big Pharma can be fairly dodgey, but they do need to make their money back and profit somehow. If they couldn’t make a profit why would they bother going through all that effort. Ideally governments and charity NGOs would be able to provide the money to create new drugs and sell them cheap, but they can’t. There isn’t enough money to cover all they areas research and drugs are needed for. Maybe if the government decided to put the entire MRC budget towards finding new drugs for one particular illness they could produce those drugs on the cheap, but who would decide what illness. So while the government does fund biomedical research, funding is spread too thin over too wide a subject area to realistically produce all the new drugs we need.

    Also, it doesn’t make any sense for the drugs companies to price the NHS out of the market. They want people to buy their drugs and the NHS is a huge customer. They price drugs at levels that will make them the development money back while the drug is still under patent (only ~10-12 years), while hopefully still making them affordable to the NHS. Sometimes they get it wrong, and sometimes there is just no way they can profitably sell to the NHS.

  16. hairyalbert said,

    August 28, 2010 at 1:48 pm

    skysteve: Sorry man, for some reason your apology appeared before your original post; it looked like you were “apologising” for someone elses post. I knew you weren’t “sock puppeting”, so I assumed someone else had logged into your computer when you weren’t looking.

    If that makes sense. :)

  17. tialaramex said,

    August 28, 2010 at 2:16 pm

    Yes, chemo sucks, but the quality of life impact of side effects varies by patient. So we can’t say for sure whether it’s “worth it” — NICE have to use finger in the air metrics for lack of anything better.

    The hair loss seems to be a big psychological problem for some patients but for me it was a convenience which I’d have gladly paid for on an ongoing basis. Similarly loss of fertility may be life-altering for a 35 year old who has been trying for a baby, but no big deal for most over-50s or for anyone who just isn’t interested in reproducing. For some people a month off work means boredom, for others it is just freedom to catch up on their reading.

    Ha, as I was writing this I had one of those incidents that reminds you how easily superstitious beliefs are reinforced. There was suddenly a loud banging sound from my empty kitchen. I think the average paranormal investigator would have been suitably impressed, and it certainly made me jump. But there was a perfectly rational explanation, which I eventually thought of and have just confirmed. An hour or so ago I ate breakfast, and I used some sugar from a large bag. The paper bag doesn’t close very well, so I placed the nearest heavy object on top to help seal it. Sure enough, on opening the cupboard after the loud noise, the heavy plastic measuring cup I used as a weight has fallen and rolled to the far end of the shelf and the paper bag is unsealed. No ghosts, just energy released from a primitive “spring” of folded paper.

  18. akanksha said,

    August 28, 2010 at 5:23 pm

    Quite an interesting article, Ben! However I am not too sure if the issue here is good research methods Vs bad research methods or good media Vs true media.

    NICE has ‘very nicely (!)’ laid out the issue with Avastin – £21,000 per patient for 6 weeks of life extension??? naah, it doesnt appeal to them. Perhaps if one of the members in the decision panel had a family member suffering from bowel cancer, it might have become cost-effective then!!! Welcome to the era of ‘your 6 weeks of life extension shouldnt be this expensive, come on, we are talking money not life!!!’

    Anyways, I agree Barbara Moss’s experience was perhaps over amplified by media – we dont make clinical decisions based on 1 successful outcome. But I am sure, that Avastin wouldnt have come to the market without at least 1 proper RCT, comparing it with other available current treatment options. So what is this fuss about Barbara Moss anecdote in the media? In my view, media is only using this story to criticise NICE and NICE is doing exactly what it is set-up for – gatekeeping & cost-effectiveness. Everybody just doing their job, but something doesnt feel right here, does it?

    I am sure 6 weeks extension is just an average figure – the length of survival will all depend on individual patients, the exact site of the primary tumor and extension of it, including metastasis. Again the survival period length and quality would depend not only on the drug, but also on the type and severity of the side-effects, the patient gets – no 2 patients are same in any respect. No one can predict whether Avastin would increase survival for patient A by 6 weeks or 24 weeks or decrease it for patient B by 2 weeks. But denying soemone a treatment which gives them a chance to live ‘a bit’ longer, because it isnt cost-effective, is in my opinion pathetic.

    Still, I am no one to criticise NICE – I think they are doing great job – in an ideal world, they could have done better, no doubt!!!

    I am shocked at the way media is presenting the entire story as! Its continuously criticising NICE saying that NICE thinks £21,000 is too much money for 6 weeks of life. What about the company who is charging this £21,000 per patient- can they justify the cost??? Monoclonal antibodies are expensive drugs but what is it that makes it expensive? the fact that it is monoclonal antibody, that it needs special production units, that it is new or that it is a major breakthrough and actually extends life!

  19. SimonW said,

    August 28, 2010 at 5:48 pm

    I’ve always thought of this of this topic as a representation issue.

    People dying of cancer make a compelling case that this might make them live longer (understandably).

    However there is no one representing the people who might otherwise receive this funding, who would get more benefit. So those opposing look like “bean counters”.

  20. dbaynard said,

    August 28, 2010 at 6:38 pm

    It would be interesting to see the distribution of outcomes, rather than just an average figure. An inverse bell curve, for example, would make the drug high risk but potentially very high reward, whereas an exponential decay would suggest that even the 6 week figure is high.

    Also, the trial compares chemo + Avastin against chemo + placebo. What about Chemo alone? If chemo + placebo is significantly better than chemo alone, then chemo + placebo must be ethically desirable.

  21. nigel said,

    August 28, 2010 at 9:10 pm

    The quality of the debate here is awesome. This excellent post should perhaps be read alongside this staggeringly good article from the New Yorker by Atul Gwande www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande. This issue combines a whole nest of difficult problems about decisions but as the Gwande article hints a lot of the debate on rationing is really to do with the difficulty of facing the inevitablity of mortality. The anxiety this creates is toxic and finds an outlet in frenetic attempts to prolong life by clinicians, impenetrable management speak from managers and politicians and wishful thinking and outrage from journalists.

    The Gwande article seems to confirm something that the outgoing president of the Mayo clinic said at a recent Nuffield Trust event that spending less at the end of life seemed to be associated with better care.

  22. quasilobachevski said,

    August 28, 2010 at 9:25 pm

    akanksha,

    NICE has ‘very nicely (!)’ laid out the issue with Avastin – £21,000 per patient for 6 weeks of life extension??? naah, it doesnt appeal to them. Perhaps if one of the members in the decision panel had a family member suffering from bowel cancer, it might have become cost-effective then!!! Welcome to the era of ‘your 6 weeks of life extension shouldnt be this expensive, come on, we are talking money not life!!!

    I don’t think it’s nearly as arbitrary as that. From the Wikipedia article about NICE. I believe it’s all about the ‘QALY’. From the Wikipedia article on NICE:-

    As a guideline rule NICE accepts as cost effective those interventions with an incremental cost-effectiveness ratio of less than £20,000 per QALY and that there should be increasingly strong reasons for accepting as cost effective interventions with an incremental cost-effectiveness ratio of over £30,000 per QALY.

  23. quasilobachevski said,

    August 28, 2010 at 9:31 pm

    Gah! The first ‘From the Wikipedia article about NICE.’ is spurious.

    Ben, can we have comment previews, please?

  24. reprehensible said,

    August 28, 2010 at 10:47 pm

    These are a few quotes from an essay I did about rationing…

    “statutory instruments and directions do not allow (them) to take budgetary impact or affordability into account when advising on cost effectiveness.” (NICE, 2008)
    www.parliament.the-stationery-office.co.uk/pa/cm200708/cmselect/cmhealth/cmhealth.htm

    Bryan et al. (2007 p.189) have produced an interesting paper following interviews with many people at NICE finding “The line put forward by many interviewees on the threshold subject was that there was not a precise value to the threshold but that when the ICER exceeded £30 000 per QALY this began to signal that the technology was unlikely to be cost-effective.”
    Bryan, S. Williamsa, I. and McIverc, S (2007) Seeing the nice side of cost-effectiveness analysis: a qualitative investigation of the use of cea in nice technology appraisals. Health Econ. 16: 179–193

    Maynard (2005 p.294), citing Fisher, highlights that “Medicare expenditure per capita in 2000 varied from $10550 per enrollee in Manhattan to £4823 in Portland, Oregon.” The differential being due to volume effects, independent of differences in the population studied, which was adjusted for illness rates, service price and socioeconomic status. Along with how “there were potential savings for Medicare of 30% of the budget with no adverse effects on patient health if high spending areas the reduced expenditure and provided safe practices of conservative low spending areas.”
    Maynard (2005) Enduring problems in health care delivery pp.294- 309. In A. Maynard The public private mix for health. Radcliffe Ltd: Oxfon

    This debate really needs to be taken up in the mainsteam media, I think the NHS budget stretches to approximately £20k per QALY, probably less now. There’s been precedents set to increase funding to the more valued end years of life to £45k per QALY however.

    Also NICE stands for the National Institute for Health and Clinical Excellence. The health bit supposed to be about giving it a remit for public health. In my essay I suggested setting up a sister body Public Rationing and Implementation of Clinical Excellence PRICE.

    I’m 30 this year if Politicians get round to rationing healthcare in my lifetime I reckon I’ll be lucky. Oh well, losing at footie today probably did me more good in the long run and only cost £2, the Pizza after didn’t help mind…

  25. Mr Ashy said,

    August 29, 2010 at 4:08 am

    I haven’t read the articles, so I might be missing something, but do we actually no her long survival is down to the Avastin?

  26. Chris Nedin said,

    August 29, 2010 at 4:27 am

    nathaniel said

    “Chris, you missed Kimpatsu’s point. He said “this is how it should be”

    Actually he didn’t.

    Kimpatsu said, “Why are drugs in this price range? The NHS should retroengineer generic versions of them, because saving lives comes before any profits big pharma wants to make.”

    Which I answered. I agree with Kimpatsu, but replied explaining why it can’t happen (even ignoring the fact that the NIH hasn’t the capacity to undertake the activity). There are, unfortunately, all sorts of problems around using other people’s IP, a situation which needs to be addressed.

    But Kimpatsu didn’t made the statement you quoted.

    Avastin’s high cost for treating lung cancer (and breast cancer) is partly due to fact that the recommended treatment is at double the dosage of previous indications (colon cancer), as well as the fact that it was bloody expensive to start with.

  27. dbaynard said,

    August 29, 2010 at 5:35 am

    @quasilobachevski

    It is as arbitrary as that.

    The £30 000 / QuALY figure (for example) is arbitrary. It is not (although it may have been) based on what the NHS can afford.

    Could £30000 provide a year of palliative care?

  28. asuffield said,

    August 29, 2010 at 10:43 am

    On average somewhere in the region of half a billion to 2 billion dollars and over a decade of intensive research. Big Pharma can be fairly dodgey, but they do need to make their money back and profit somehow. If they couldn’t make a profit why would they bother going through all that effort. Ideally governments and charity NGOs would be able to provide the money to create new drugs and sell them cheap, but they can’t.

    Can’t? Significantly more of the research funding comes from governments than from the pharma companies. Governments generally won’t fund development of patent-extending variants, so pharma companies focus their efforts on those; any new treatments that are actually valuable were probably government funded, and in particular any risky research that did not have a good chance of delivering a profitable result would probably have to be funded by the government. Pharma companies are not in the business of funding those things, they are interested in making new variants on well-known profitable drugs so they can get another patent.

    And then when the government has paid for the whole thing, the pharma company patents it and makes a fortune off their complete lack of investment. Drug patents are little more than theft.

  29. davidgarrick said,

    August 29, 2010 at 10:55 am

    Nice piece Ben. I’m not sure that the commenters are fulling getting it. Since we have a NATIONAL health service – if we don’t spend the money on futile cancer treatments then we get to spend it elsewhere.

    And the thing is there are thousands of patients who aren’t getting the palliative care they need. And that would be a much better place to spend the money then extending the lives of a few people by a few weeks. Read the National Audit Office on the failing of palliative care provision across the UK.
    www.nao.org.uk/publications/0708/end_of_life_care.aspx

    There was a very good BBC Documentary about all this last year. I think you can see it here. www.vimeo.com/4796083

  30. quasilobachevski said,

    August 29, 2010 at 4:45 pm

    dbaynard,

    The £30 000 / QuALY figure (for example) is arbitrary. It is not (although it may have been) based on what the NHS can afford.

    There’s (roughly speaking) a system to decide whether a given treatment offers good value for money. You may argue that the system should be different, or should have different parameters, and you may well be right, but nevertheless it is a system. Which is a lot less arbitrary than the way akanksha seems to think NICE works, viz:

    Perhaps if one of the members in the decision panel had a family member suffering from bowel cancer, it might have become cost-effective then!!! Welcome to the era of ‘your 6 weeks of life extension shouldnt be this expensive, come on, we are talking money not life!!!’

    Actually, what I really should have highlighted is the second sentence of this quote. When you say emotive things like ‘we are talking money not life’, you deny the very possibility of making meaningful decisions about the cost effectiveness of medical treatment.

    If everyone understood that, as Ben says, ‘Rationing healthcare resources is … unavoidable’, then it would be much easier to have a grown up conversation about whether £30,000 / QuALY is a the right amount.

  31. jamesc said,

    August 29, 2010 at 5:15 pm

    Ben,

    The issue is not quite as you suggest, because the profits drug companies make from the NHS are regulated by the PPRS.Thus the marginal cost of the drug may not be £21k, because they may be clawed back by price cuts elsewhere.

  32. eddwilson said,

    August 29, 2010 at 7:53 pm

    Can I just clarify something? Drug prices are usually given as annual charges. Is Avastin £21k pa and therefore a notional £2423 for six weeks? Or is it £21k for your six weeks and therefore £182000 pa? And is £21k the net figure after the various paybacks (some of which I seem to remember would only apply if the patient survives a full year), or not?

  33. dbaynard said,

    August 30, 2010 at 1:14 am

    @quasilobachevski

    I accidentally overstated the arbitrariness…

    I suppose there’s no viable alternative. If you have a QuALY price that changes, NICE would have to make recommendations that specify what QuALY price would make a treatment suddenly viable. And politically, step functions are impossible.

    bump on whether or not 21k is annual or (which?) average

  34. dbaynard said,

    August 30, 2010 at 1:20 am

    Should have said:

    A QuAlY price that changes with the NHS budget would require NICE to put a specific amount of funding above which a drug will not be recommended, which is politically disastrous, and so what seems to me like the most evidence-based alternative is unfeasible.

  35. PsyPro said,

    August 30, 2010 at 6:23 am

    Whatever the power of the particular anecdote, we do have documented evidence of the extraordinary power of manipulating testimony: Anthony G. Greenwald, Eric R. Spangenberg, Anthony R. Pratkanis, and Jay Eskaenzi (1991). DOUBLE-BLIND TESTS OF SUBLIMINAL SELF-HELP AUDIOTAPES. PSYCHOLOGICAL SCIENCE, 2, 119–122. The “illusory placebo effect” has not been accorded the place in skeptical thinking it truly deserves.

  36. MSB said,

    August 30, 2010 at 8:33 am

    The cost of the drug is quoted as 21k “per patient”. If patients on Avastin live, on average, 21.3 months, then the cost is GBP1000 per month, or GBP30/day.
    OK, it’s not aspirin, but I wouldn’t call that price gouging by the drug company.

  37. roobarb said,

    August 30, 2010 at 9:18 am

    Re. the NHS taking over manufacture of expensive medicines still under patent. Even if this was legally possible, it is not practicable. Existing NHS pharmaceutical manufacturing units almost exclusively make Specials i.e. formulations of established drugs for specific patient needs, and most of them are quite small with limited facilities.. Those that produce the very few licensed products are not, as far as I am aware, synthesising their own drug substances but purchasing them and formulating them. To produce Avastin or any other MAbs would involve massive investment in factories, clean rooms, manufacturing kit, autoclaves, R&D, regulatory work, staff, etc. etc. The £50M would go nowhere at all.

  38. akanksha said,

    August 30, 2010 at 9:21 am

    Wow! I’m starting to like this discussion now! I thought I didn’t have enough energy left to do anything after being oncall on a bank holiday weekend, but this discussion feels like a good cup of morning coffee. :)

    Thanks to everyone who read my post and commented on what I thought. Now I think I should just make a few things more clear.

    In my post above, I have tried to see (or show!) things from everyone’s perspective, who are either involved in the decision making process or are effected by it and/or benefited by it.

    @quasilobachevski, @dbaynard – thanks for quoting out QALY figures. I agree NICE doesn’t work as arbitary as it appears from that particular paragraph from my post.

    [quote]NICE has ‘very nicely (!)’ laid out the issue with Avastin – £21,000 per patient for 6 weeks of life extension??? naah, it doesnt appeal to them. Perhaps if one of the members in the decision panel had a family member suffering from bowel cancer, it might have become cost-effective then!!! Welcome to the era of ‘your 6 weeks of life extension shouldnt be this expensive, come on, we are talking money not life!!!’[/quote]

    This was from the perspective of someone whose loved one is just being diagnosed with bowel cancer and heard about Avastin and then he heard about NICE decision on it.

    I further wrote:
    [quote]In my view, media is only using this story to criticise NICE and NICE is doing exactly what it is set-up for – gatekeeping & cost-effectiveness. [/quote]

    and I wrote again: (and all this is from NICE perspective)
    [quote]Still, I am no one to criticise NICE – I think they are doing great job – in an ideal world, they could have done better, no doubt!!![/quote]

    and then I wrote about my gut perspective:
    [quote]Everybody just doing their job, but something doesn’t feel right here, does it?[/quote]

    But the most important issue I wanted to lay emphasis on was perhaps the very last paragraph:

    [quote]I am shocked at the way media is presenting the entire story as! Its continuously criticising NICE saying that NICE thinks £21,000 is too much money for 6 weeks of life. What about the company who is charging this £21,000 per patient- can they justify the cost??? Monoclonal antibodies are expensive drugs but what is it that makes it expensive? the fact that it is monoclonal antibody, that it needs special production units, that it is new or that it is a major breakthrough and actually extends life![/quote]

    I fully agree that NICE accepts as cost effective those interventions with an incremental cost-effectiveness ratio of less than £20,000/QALY – but the point is that what is it which decides that £19,000 is worth spending the money but £21,000 isnt?

  39. akanksha said,

    August 30, 2010 at 9:32 am

    oops! sorry for the bad formatting above. I need some coffee and Ben, we definitely need preview option for the comments!

  40. NorthernBoy said,

    August 30, 2010 at 10:25 am

    Nathanial, you’say that it is morally correct that the government should be able to manufacture copies of these drugs, but it’s hard to see how that view is justifiable.

    For one thing, there are consequences of such actions. One very likely outcome of ripping off the big drug companies would be a trade war with the US, trade sanctions, and a likely real and noticeable effect on the wealth of the UK, with all the subsequent negative outcomes from a health perspective of reduced tax take, and reduced NHS funding.

    Even if we just did this with drug companies based in the UK the outcome would not be good. You would be reducing the incentive to develop new drugs, as companies would know that they would make less money from it than before.

    There’s nothing morally good about actions that are going to net harm the whole population like this.

  41. eddwilson said,

    August 30, 2010 at 7:06 pm

    The real argument is over opportunity cost – if you spend a relatively large amount of money on a single person then that money cannot be spent on other treatments, potentially for a large number of people.

  42. walks with tench said,

    August 30, 2010 at 8:29 pm

    Spot on above; “You are not saving lives, you are prolonging them”
    YOU ARE GOING TO DIE ANYWAY.
    You can die horribly now; or really horibly in eight weeks time; if you’re really lucky, when you lapse into a come, we’ll bring you round and make you suffer a little longer.
    Give me a bottle of Port and a large glass and spend the money on someone who might benefit from it.
    Same result for a tenner a day!

  43. Sqk said,

    August 31, 2010 at 12:10 am

    For those requesting a preview option:

    If it helps, I write my comments out separately, then save, review, correct, then copy and paste in one go into the big white box at the bottom.

    I don’t know if this is an option when you’re not writing with a computer. Please tell me if it’s not. I did my dissertation not so long ago on a word-processer when ‘copy and paste’ meant using scissors and glue and ‘insert image’ involved careful winding through the typing mechanism. (I was offered violence at my suggestion of attempting a PhD the same way). I’m not yet into the new fangled world of gadgetry, but as I’m learning exponentially it’s only a matter of time.

    The main problem I have when commenting is the way it times out during uploading and then loses comments and makes me think they’ve not appeared or makes me think they’ve been loaded when they haven’t. It’s why I took to writing a draft in the first place: I was fed up of constantly re-writing. It would be nice if that problem could be sorted out.

  44. A.N.Other said,

    August 31, 2010 at 12:44 pm

    I’m a long-time reader, but for this post, I’ve made an account. Fantastic article and a good read.

    I’d also like to thank nigel (comment 21) for posting this link: www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all. It’s an epic read, but well worth it. If you didn’t catch it above, read it now …

  45. stoneyground said,

    August 31, 2010 at 3:22 pm

    Dr Goldacre you are my hero – articles like this should be read by all my patients (and CAM loving friends for that matter!) Keep up the fantastic work..

  46. amcle said,

    August 31, 2010 at 5:05 pm

    I write as someone diagnosed with stage 4 bowel cancer about 18 months ago. My wife was diagnosed with throat cancer at the same time. A friend is about to die from leukemia. I have some experience of chemotherapy, some personal, some vicarious…

    I fully support NICE. I think the commenters should too – at least to the point of going to the NICE web site and reading what they have to say, rather than relying on the Daily Mail, Daily Telegraph…Then you can find out what a dose of Avastin costs, how often it is given and a number of more interesting facts.

    1. My wife was cured by chemo plus radiation. The effects of the massive doses of chemo were awful. The drugs cost about £16000 for the course of treatment which lasted for four days. The radiation is what removed the tumour. I have no idea what the cost of the radiotherapy was – she was one of the last patients on an old system. The new machines cost a few £million. But she is cured. On the other hand, she found the experience so appalling that, if the condition returns, she may not go through the treatment again.

    2. I appear to have been cured (a word not used for bowel cancer) by bowel surgery plus chemotherapy plus liver surgery. No-one seems to know why ancient drugs like 5-FU plus LV zapped the metastatic tumours on my liver. What you ought to know is that the chemo is given as 6 doses, every two weeks (assumimg white blood cell count holds up. Then a breathing space (includes CT scan in my case). Then a further 6 doses every two weeks. That’s it. No more chemo. I had few side effects. Very very very tired for a few days in the first week after treatment. Food tasted a bit odd for a few days. Had some tingling in feet and hands. I’d do it again without reservation. Liver resection (2/3rds of it) cut out the tumours about 12 weeks ago. I’m back to normal health. All this is about as far from the norm of stage 4 bowel cancer as you can possibly imagine. And all without Avastin. You won’t see cases like mine reported in the Daily Mail.

    3. My friend with lukaemia? he has given up. Recurrent chemotherapy has left him feeling so awful he never wants to feel like that again – literally, he would rather die.

    So, three anecdotes giving widely differing messages. The only way to make sense of anecdotes is with proper trials. The only way to decide on how best to spend limited government funds in a particular are is to see what is the best value for money. Otherwise the loudest shouters get the money spent on them.

  47. alexanansi said,

    August 31, 2010 at 6:01 pm

    It’s interesting that you posted this… the refusal to consider anecdote as scientific evidence is one of my personal irritations.

    However – the big thing is that anecdotes must be seen as what they are, as an individual story. They must not be used as evidence that this individual story is the norm – unless strong scientific evidence says it is representative.

    Anecdotes are used in court as evidence, and this is because it can convey information such as motives when scientifically measurable information is not available or is not suitable.

    If someone had to describe your personality – would you prefer them to use personal experience, perhaps a story, or to just relate facts? Language can convey a huge amount of information, that’s why we use it, and the huge number of possible permutation of words can be used to describe very subtle parts of our world. Just because it is not measurable scientifically does not make it useless.

    I’m very happy you agree that it at least has a role – I have been having (amiable!) arguments in work with someone about this!

    As I have said, I am a massive advocate of scientific study, but the power of anecdote as evidence should also be considered. Anecdotal evidence can be misused and so can scientific evidence, but that doesn’t mean either approach should not be used when the context is correct.

  48. DrJG said,

    August 31, 2010 at 6:37 pm

    Though I often wonder why, I am still, generally, something of an old-fashioned socialist when it comes to public ownership of what are designated as essential public services, including, of course, the NHS. And I am no fan, in broadest terms, of much of the dubious practices of Big Pharma.

    Yet I am suddenly filled with dread at the thought of the government taking over drug research, until UK research is decimated the next time our financial services industry brings the nation to the brink of bankruptcy and has to be bailed out to the point that all non-immaediately-essential spending is slashed. Am I alone in that?

    For eddwilson and others wondering about how the costs are divided up, I am not sure of exact dose schedules. However, the data sheet range of doses, which are given in terms of mg per kg body weight, would mean that one or possibly two 400mg vials are needed every two or three weeks, at a price according to the Sept 2008 British National Formulary of £924.40 per vial. This works out to around £15700/year for a three-weekly schedule, and £24000/year for two-weekly. Not clear how either of these relate to the £21000 quoted, but remember that these “survival prolonging” drugs are generally given until either side-effects cause too much trouble, or the disease is clearly progressing despite the therapy – even then there may be an argument that progression would be faster without.
    They are not given simply for the six weeks average extra life, nor in a pre-defined and limited number of courses such as amcle describes.

    Nor, as some people who should no better have argued elsewhere, do these drugs save on later palliative care costs. They at best delay this expenditure, but as they are virtually never curative, the palliative care costs will arise sooner or later. This is not, per se, an argument against their use, simply a refutation of one claimed argument For their use.

  49. pberry said,

    September 1, 2010 at 8:37 pm

    When I heard this story break I was already looking forward to Ben’s take on it, because it’s pretty much a textbook example of a four-way struggle between funding drug regimens on the NHS, politicians wanting to please everybody, advocates for such funding at any cost (literally) and the patients themselves. Throwing a single-exception anecdote into the copy really helps to muddy the waters. Thanks, print media!

    As “skyesteve” so rightly pointed out (back in post #6; others have touched on this): it may extend your life by a mere six weeks, but that’s six weeks essentially spent dying. That might not be worth it even if the drugs cost half of the going rate.

    There will always be “miraculous” exceptions to any prognosis, however bleak, yet I don’t see people clamouring for extra motor-neurone care funding by pointing at the example of Stephen Hawking.

  50. merrilegs said,

    September 2, 2010 at 2:02 am

    This story is covered in somewhat technical detail over at SBM (science based medicine), and the coverage offers some good understanding as to why Avastin should not be not be used for meta static breast cancer at least.
    Thanks for this column. While i often leave here cross with the world at large, i always feel i have learnt something.

  51. steveg said,

    September 2, 2010 at 4:20 pm

    This relates to Herceptin rather than Avastin, but I think it’s relevant to the discussion.

    Demands for ‘off-licence’ access to trastuzumab (Herceptin): content analysis of UK newspaper articles
    onlinelibrary.wiley.com/doi/10.1111/j.1369-7625.2010.00617.x/abstract

    Background  Sensationalized reporting styles and a distorted framing of health-care issues in newspapers may trigger inappropriate commissioning decisions. We evaluated UK press coverage of pre-licensing access to trastuzumab (Herceptin) for early breast cancer as a case study.

    Methods and findings  Content analysis of newspaper articles published between April 2005 and May 2006 were coded by two researchers for interest groups represented, claims made and sensationalized reporting. Disagreements in coding were resolved by a third researcher. One thousand and ninety published articles were identified in the study period and a 20% sample (n = 218) was included in the content analysis. Most articles (76%, 95% CI 71–82) included claims about the clinical benefits of trastuzumab, and this was significantly higher than those expressing the uncertainty surrounding such benefits (6%, 95% CI 3–9) or those that discussed the potential harms (5%, 95% CI 2–8). Articles were significantly more likely to feature claims made by a breast cancer survivor or family member than any other interest group (P < 0.0001). Almost half of the articles carried some message to the effect that trastuzumab would make the difference between life and death (47%, 95% CI 40–53). Over a quarter (28%, 95% CI 22–34) suggested that trastuzumab is a ‘miracle drug’ or similar.

    Conclusions  The benefits of drugs are highlighted, frequently using sensationalist language, without equal consideration of uncertainty or risks. Health-care purchasers should express decisions in opportunity cost terms; journalists should give fairer coverage to such arguments.

  52. amcle said,

    September 3, 2010 at 1:14 pm

    This blog from the BMJ summarises things nicely, and answers some of the cost questions posed above.

    blogs.bmj.com/bmj/2010/08/31/james-raftery-on-bevacizumab-for-metastatic-colorectal-cancer/

  53. johnkooz said,

    September 14, 2010 at 5:22 pm

    @bengoldacre Finally a leader who’s not interested in being part of the baby-boomer generation “boat”. Good times. (that is a conclusion derived not just from this article but seeing ben in that long interview with the guy with odd hair and peculiarly large head where ben and he each had three beverages). jolly good!

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