Velcade

I'm very willing to write to TB on this one and to make it a bit of an ABCtales campaign - but tell us more. What is Myeloma? Why has the drug been withdrawn? Cost or danger?

NICE have had a bad press recently and it is unfair, they do a shitty job, trying to distribute a finite pot of money where it will do the most good. They don't just pick answers out of the air either, they work to a strict formula based on evidence of how much a drug can improve and prolong peoples lives. If, as you say, they have rejected the drug for one use but it is still valid for another then that is something to go on. Though I doubt the combined lobbying power of abctales is worth a pfennig compared to that of the drug company.

If there is corruption in NICE then all the evidence points to it working the other way, with several accusations of undue influence from drugs companies. There was a thing about in the paper a few weeks ago. Also, it's a bit off to lump self harm in with drink related injuries.

The sad fact is, stitches and stomach pumps are cheap. It's a miserable business.

Drugs have to be tested and approved, obv. Once they're deemed to be of benefit, however, I'd expect them to be available to all. I don't know the stats, but my gut feeling is that money from the pot is lost in too many other directions and that's why the availability of expensive drugs has become an issue. It shouldn't, but it has. Hospitals, trying to keep within unrealistic budgets, have come out against NICE in the past for recommeding the use of *too many* expensive drugs. I reckon if the relevant government departments were to promise to sit on their hands for five years and not commission any more reports, strategies, initiatives, overviews, recommendations or think tanks - they could pop all the spare cash in a piggybank and pay for the drugs that way. ~ www.fabulousmother.com

A course of velcade can cost £18,000. Herceptin costs even more. With costs like that you can see why the cost benefit is a tricky thing, especially as velcade is palliative care, not a cure. A better question to ask is *why* these drugs cost so much, it certainly doesn't cost that much to manufacture. The cost, as far as the drugs company is concerned is in RnD, but RnD in a drug company is a bottomless pit, they pour far more of their revenue into it than any other industry and for far less return. Millenium pharma have basically picked a number out of the air that they think they can sell the drug for (and they love this fuss - they may even be helping it along), Bortezomib will be in patent till 2014, during which time, if nobody comes up with a better alternative, they have a monopoly. If there is an argument for legislating anything, it is legislating control over drug pricing. Of course even that has it's bad side, less money goes back into research (and drugs companies account for the majority of all medical research) and the drugs for other diseases yet to be discovered get further away.

I think there's a case for more state regulation of drug pricing, in return for more state investment in research - this could even be done on a transnational level to make it more palatable in a global economy - but I am, of course, a social democrat with quaint outdated opinions on these things. In general I'm with Dan on the NICE question. These guys have one of the hardest jobs in Britain and obviously every individual - myself included - thinks the treatment that could help themselves or their loved one(s) is a priority. But economics is about matching limited resources to unlimited demands. We can't just pay for every drug that would provide some benefit to some people. We could spend the entire national GDP on healthcare and still not do that. Other countries in Europe don't do that, they just make different choices. The US provides no healthcare AT ALL for 40million+ of its citizens. We're not perfect but we could be much worse.

"Supposing the NHS says they would fund up to a certain amount for drugs per person per year.The rest paid for by the patient." That seems like a very bad idea. The decisions need to be taken based on criteria that combine cost and effectiveness. Under your idea some people would get cheap drugs that were 2% effective, while others wouldn't get expensive drugs that were 98% effective. "The NHS should charge for some things.Or ring fence taxes on the distructive things booze and fags." Well, the amount of money spent on the NHS already vastly exceeds the revenues the treasury gets from taxes on booze and fags. "I hate to mention it but we will all get old and ill.Isn't it a mark of who we are, how we treat the frail, how we treat our old and ill." It is but that's a different to the question of which drugs the NHS buys, when it can't afford to buy all drugs for everyone. Whether or not it's right in the specific case of this specific drug - I don't know, I'm not a medical expert - what they NHS aims to do is to meet need to the best of its ability within the available resources. It's obviously not perfect in terms of delivery but as a starting point for health system, I think this is a pretty good principle.

where do you get that 10% figure from Camilla?

Until recently I worked in a chronic disease unit , and I would say that whilst Diabetes type 2 DOES take a lot of the cash, COPD and hypertension probably cost much more. Currently there is a scheme - not sure whether it is in our PCT or countrywide, to run MOT schemes for patients. For several years these patients have been on a recall system, preventative care has long been the preferred way of keeping costs down. You should hear the abuse slammed out by the great British public when asked to come in for yearly or 6 monthly tests to maintain their health. They dont really care about the NHS or their own health unless they hurt - sad but true. So preventative care is already out there, it's not a particularly innovative or new idea I'm afraid. I've long advocated taxing cakes - though the NHS makes more from fag revenue than it spends on lung care, and it would probably be the same thus. Schools are being urged to provide healthy food, junk food is about to be banned from kids tv, it is happening. This figure will not double, it will grow less and less, it's clear. Some drugs are prohibitively expensive - many for reasons that are not entirely clear, but drugs that are produced in limited amounts for rare diseases, will always be expensive. Think of it as a technical text book - not many will read it, so it costs more to print, sadly. Also sad is that we all think we have a divine right to life. Frankly, we dont. Whilst health centres are only paid £100 per year per capita to provide services to the public, there will always be a shortfall. Fine in areas with a healthy teenage population that nip in for the odd contraceptive prescription, not fine for areas that have an elderly sick population. Thats the part which needs overhauling, frankly.

You misunderstand me. Herceptin is used more, is it not? I am willing to be persuaded that I am wrong!

This is an example of the sort of expenditure that I feel places unnecessary strain on the situation. I've worked for a couple of management consultants in the past (only as a pleb in support, you understand). They're very ordinary people - they're not magicians - they're not even experts in the fields they consult on... but, jees, you should see the money they make out of clients. "The National Health Service now spends more on consultancy than the entire UK manufacturing industry, and is the fourth largest market for consultants. The latest survey on the consulting market by Accountancy Age reveals the extent to which the NHS, currently struggling to manage its over-budget IT programme, has become a key fee income provider for consultancy firms... and increased its spending on consultancy by over 26% last year, adding an extra £67m." (Kevin Reed, Accountancy Age, 29 Sep 2006) ~ www.fabulousmother.com

"The National Health Service now spends more on consultancy than the entire UK manufacturing industry, and is the fourth largest market for consultants." Well, yeah but - with the growth of the NHS and the decline in manufacturing - it probably employs a fairly similar number of people in general.

Um - it's not about the number of people employed. You don't need an outside management conusultant (and it's that type of consultant the report refers to) per x number of employees. Of course the NHS is varied in its responsibilities, but it's still under one 'company' banner - unlike the diverse range of competing industries that come under 'manufacturing.' Even the BMA accuses the NHS of being 'addicted' to management consultants with no hospital experience. ~ www.fabulousmother.com

Not defending management consultants (who are a bunch of bloodsucking leeches) for a second, but I imagine the NHS has trouble finding good managers, doctors prefer to, and can make more money at, doctoring. I am of the opinion that people hire consultants when they havent got the balls to make a decision themselves. keep your grubby mits off my website http://www.too-many-monkeys.com

oo..Tom Derret's a bit of awright, aint he. I prefer Duncan though because he looks like he loves his mum. What award(s) have you won? There's nothing more mind-teasing than the incomprehensible eagerly avowed - Dennett

Ooh nice cameo in there by the abctales mug...

"Um - it's not about the number of people employed. You don't need an outside management conusultant (and it's that type of consultant the report refers to) per x number of employees." Yeah, and I'm hopefully - for manufacturing's sake - a little bit out on the employee comparison but the point was that the NHS is very big. "According to an article in todays Sunday Times tens of millions are spent removing tattoos." What, by the NHS?

I do think that this treatment should be available on the NHS. I sympathise truly - last year I had probably the best part of 100K worth of surgery and treatment which saved my life and I would hope everyone could have the best chance possible as I did. But I don't see a clear link with drink related injuries which do need addressing but adding more duty to alcohol won't solve the drink-culture. Not all binge drinkers showing up at Casualty are alcoholics but some are and alcoholism is an illness as recognised by the World Health Authority and I lean towards showing compassion for sufferers. jude "Cacoethes scribendi" http://www.judesworld.net

So Camilla - it is not fair for NICE to choose (intellgently and no doubt with many considered professional opinions) which drugs are freely available, yet it is fine for you to sit in judgement as to who is worthy for NHS treatment, ie no self harmers or AIDS patients? Dear oh dear.

To be fair, you didnt say that, and I'm sorry if I put words in your mouth. It was this quote of yours with more than a hint of indignation in the multiple question marks that made me suspect it - "I mean a liver transplant for an unrepentant footballer.puhleaze.I also suspect that many other expensive treatments for other diseases are funded.How much does it cost to keep HIV sufferers alive???" I can see its an emotive subject for you, and I have no doubt whatsoever I would feel anger too if a loved one was dying of a how is it even possible to distinguush i wonder, but maybe a 'no fault' disease, but you just cannot make such judgements. Alcoholism is a disease too. Yes, binge drinking is foul for all manner of reasons, and yes, there should perhaps be other ways to fund healthcare, but you cant say who deserves and who doesnt by your own moral compass. That way lies disaster.

If not cracking your skull open isn't a good enough incentive to drink in moderation, then saving the taxman a few bob isn't going to be either.

I dunno, I was under the impression that one of the things that royally effed the NHS up was the removal of management, not it's proliferation. In a drive to make cuts through efficiency, I'm fairly sure that successive Conservative governments removed more and more of the management structure of NHS hospitals. This meant that no matter what money you put in, there was no one there to make sure it got used properly and efficiently. I may be in a minority here, but I think effective management is vital to undertaking any complicated activities. In this sense I mean allotting of resources and strategic overview. Ineffective management is another thing... Camilla, I'm a little dubious about your claim that there was a drop in self harming behaviour during the Second World War. I'm sure people who might carry out such surveys or diagnose such behaviour may have had other things to do, which doesn't meant such behaviour did or didn't happen, it just means that no one recorded it. I think your situation is extremely sad and difficult, but it has set me thinking... The situation you're in wouldn't really have happened at any time previous to our own age. The increased access to information afforded us by digital media, internet etc has given us the opportunity to become 'lay experts'. Previously, the bods with the knowledge would have made their decision, and for the most part none of us would have been any the wiser. Now, information is so diffused, that it is possible for us as lay people to pick up this stuff and know what is going on, and more importantly, what it means. Previously, it would have taken an organised pressure group to 'bring to light' these issues, now it's possible for one person to make themselves a media phenomena in pursuit of a change of medical policy. I'm very uncomfortable with the idea of deserving and undeserving ill, and I don't think you do yourself any favours by falling into that trap of thinking. Binge Drinkers aren't taking the potential of receiving effective medication away from you. Sadly, the most direct needs are the one that must take precedence, but rightly so. Making illness a moral issue is always a mistake. I don't want to live in a world that differentiates between 'good' AIDS and 'bad' AIDS. I also think that the argument that 'the NHS wasn't there for mucking about with' is a very flawed one, Camilla. Unless I'm very much mistaken, people in general are healthier than they were in the 1950s, have less destructive personal habits and living conditions which are healthier, on the whole. I always feel that the responsibility argument tends to demonise people who are on lower incomes and who have had less educational achievement, which, it's probably worth remembering, is the very people the NHS was set up to help. People who are poor do tend to be less healthy than those who aren't. They do also tend to have less money. Aside from that, I think that Big Pharma is the real villain here... I'm really sorry for your distress Camilla. Cheers, Mark

At only 1100 employees I don't think Millenium really counts as 'big pharma'. But in defense of big pharam anyway (because I know bunch of people who work in that industry and I don't like to see them badmouthed), they fund the overwhelming majority of all drugs research, every cancer research charity parachute jump ever done is just a drop in the ocean compared to what they churn back from the sales of handcream and sunblock. Also, they don't owe you a damn thing. All you can ask of them is that the products they sell are safe and do what they say they do. Which, because of massive government regulation, they do better than any other industry I can think of. They are just businesses, and are just there to make money. An expensive drug is a lot better than no drug.

Dan, I do see your point, in fact I was outlining it to someone in a discussion I was having the other week. Research and development is expensive, and profit driven R+D does push on research, because a company is looking for a niche, be it a better treatment for a big area or a very specific treatment for a small area. I just wonder whether profit should be as big a motive as it is. By all means cover the cost of R+D, and also turn a return, but beyond that... I suppose, though, it does make sense that a drug for an uncommon condition should cost more, as it's a drug with a small market, therefore would have to have a high unit cost. However, once development costs are recouped, plus enough to make the effort profitable, surely a drop in price could be in order? I was trying to direct the argument away from 'those wastrels are using up the money that could be spent on my treatment' to a wider consideration of the situation. Obviously, public good and profit often cross over, but sometimes they don't. Is it possible to have more research that isn't yoked to paying the shareholders? Cheers, Mark

"They are just businesses, and are just there to make money. An expensive drug is a lot better than no drug." Well it's a lot better for people who can access it - either through socialised health care, insurance or their own wallet. For people who can't access it, it's exactly the same. The question - or at least a question - is whether it's right for the most drug research to be in the hands of the private sector. Not because the private sector's inherently bad but because - as you rightly point out - it's job is to make profits. It's definitely worth considering whether the state should have a bigger role in funding research.

Your right Mark, and I wasn't trying to pick a fight or anything, but some people have a kneejerk reaction to large industry and it's mostly unfair. An awful lot of pharmacolgical research is open ended pure reasearch, the shareholders would prefer to find treatments rather than cures (because you can only sell a cure once), but they find what they find, and if they can sell it they will make it. For instance, I know the employees of one (very big) company are asked to bring back soil samples whenever they go on holiday, simply because they are looking for new bacteria that might do something useful. Pricing of drugs is a very strange business. In any other industry it would be a factor of manufacturing costs plus sales and RnD overhead. But in pharma the RnD overhead overwhelms all other factors and is unquantifiable, there are so many blind alleys and potential avenues of research, you can only ever spend more. Also patents on drugs are far more potent than in other industries, because in any other product the patent may only cover part of how it works, in a drug it covers the actual active molecule, this pretty much prevents any competition. As a consequence drugs are priced based on what you can sell them for. A lot of that profit goes to shareholders, it's true, but most of it goes straight back into RnD. Like I said towards the top of this thread, I think there is a strong argument for legislating price control. Bukarinetc. is right that this would be better done transnationally though I wonder if it could be done nationally in conjuction with tax breaks for research or something. This ties in with the well publicised problem of expensive AIDS drugs being pirated in Africa, and who could blame the pirates. As the regulatory burden for putting drugs on the market increases, and as more and more hi-tech methods of drug research come into play (genetics etc.), they are only going to get more expensive.

"Very firm boundaries need to be set.I'm not saying one wouln't treat but perhaps we all do need to put together the effect of individual behaviour on the general resource and no one ever dares to." Well, boundaries are already set - in the sense that people are refused treatments if their choices in terms smoking, alcohol or using other drugs mean that treatment would serve no purpose. Practical judgements - based on the physical effects of lifestyle choices - are fine but what you're asking for is moral judgement. I actively don't want the state making more moral judgements about people's lifestyle choices. It already does so to a far greater extent than I'd like.

Since when has alcoholism been recognised as an illness? It'll be sex and chocolate next. I'll be able to ring in work and say, "I can't make it today, I'm drunk and I've been spreading nutella over a whore's breasts all night." "I understand Yan. Just make sure you look after yourself and keep in touch." There's nothing more mind-teasing than the incomprehensible eagerly avowed - Dennett