nytimes.com/2013/04/26/busi... close friend in America who has PV and has now been treated with Gleevec for a while has, after his latest check up, been told by his endocrinologist, oncologist and haematologist that all his results are now essentially perfect and that he may well remain on Gleevec for 20+ years. At $100,000 per year this cold cost his insurers $2,000,000!
By coincidence that same day there was this article in the NY Times published April 25:
nytimes.com/2013/04/26/busi... addressing the extreme cost of drugs like Gleevec and asking whether the companies who make these drugs are in effect profiteering. This issue has also been raised in an open lettter from a number of doctors including specialist haematologists in the US like Dr Tefferi and Dr Silver.
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Dodders
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Hi Dodders - Im sure the answer is yes in most cases, perhaps not in the first year or 2 as development costs can be very high i believe but to continue high costs year on year makes the drugs prohibitive for NHS patients in UK and peops who have no health insurance in US. Maybe thats where the fault lies as many drugs are developed in the US and insurance companies end up picking up the tab which may result in inflated prices. The UK body NICE don't seem to sanction drugs for NHS use over 30k a year so companys may have to reduce the price if they want some return here. Of interest to me of course is Rutoxlitnib which hasn't yet been sanctioned as it comes in at about 40k a year.
I saw on the news that some drugs are very cheap in India -the one quoted was 100 pounds a year as opposed to 20k here- due to copies being made. It is clearly a very lucrative area and a bit of a lottery the way its managed and I can only see it getting worse in the UK.
Anyway rant over for now and thanks for posting the link. Cheers
Yes, yes and yes! They do charge too much. We have to remember that drug companies are not actually interested in curing people - it is just business, and a profitable one at that. From what I understand their share holders are usually quite happy. Part of the problem seems to me to be that USA health insurances will pay out for the drugs athough this obviously means that health insurance gets progressively more expensive. I have a son living in California at the moment and he is paying a fortune in health insurance.
When it comes to the UK,however, as Jedireject says, NICE says "no way"! He mentioned ruxolitinib - the ONLY real treatment for MF even though it is thought to be only palliative. It is the symptoms of the disease that most distress us all and if a drug can control the symptoms and only maybe life extending it still has to be worth a try. As a MF sufferer who desperately wants/needs to try Ruxolitinib but cannot access it because of costs you can take my rants as born from cynicism but I think I have a valid point. I know that there is something out there which might be beneficial to me but because of cost I cannot have it - it is very frustrating. The drug companies argue that without the high costs they cannot go on to produce new drugs in the future. I guess it is the way the world works - and in the UK it is the price we pay for socialised health care. Rant over!
I have been on Rux for 7 months taking Panobinistat every other week for 3 days. Because I'm on a trial I don't pay for my drugs (thank-goodness) but didn't realise how much just the Rux was!!! I've had a break from all meds for 4 weeks due to needing blood trans every week. This week my bloods came in at 10.6 the highest they've ever been but I definately was feeling the loss of my meds!!! I've been restarted on Rux and a much lower dose of Panobinistat to see if that will help the reduction in Blood trans we'll see when I go to the hosp next wed!!! . I can say that if Rux is £40K in the UK it will be very much higher in Ireland we are charged way over the odds here for meds. Can you not go on a Clinical Trial Beetle try other hospitals if you can't get on one locally? I'm on a trial in a hosp that's 3 and a half hours away that's been a trial on its own!!!!!!! Easier now as I only go once every 2 weeks and my local hosp every other week just for blood checks. Good Luck and rant away......
NICE have just officially rejected / denied Ruxolitinib. Now there's a surprise.
Hi JediReject .. Yes NICE have rejected/denied Ruxolitinib, but this was only the first round. The drug company have re-presented their case and hopefully dropped the price a bit!!! The final NICE decission is mid June, so hopefully they will accept it.
Hi Suska thanks for that and let's keep our fingers crossed for a positive outcome because even if the drug helps only a handful of people it will be worth it. And of course it has wider implications for roll out for other MPNs. I will be watching.
Yes, it's early days I suppose and if the ongoing trials and treatment continue to give good results then it must surely become harder for NICE to continue to reject.
The cost of many drugs used to fight cancers can be very high and thus raise interesting and problematic conundrums. For those in America with good insurance it seems that the sky is the limit; after all the doctor can happily prescribe the latest and best treatment knowing that the insurer will pick up the bill, and presumably the physician gets more work and more fee. A cynical view maybe. The danger is that patients can become 'over-medicalized.' For life limited patients the cost of a drug that can extend their life by even a few months is going to be irrelevant but for the NHS the choice is much more stark: a new baby incubator, or giving a 50 year old another 3 months of life? It's very difficult. So long as the drug companies know they can get the asking price they will surely continue to charge that high cost. If they don't then will the research and development into new drugs dry up?
At least for those of us with MPNs there is a lot more research into these strange blood disorders. When I was diagnosed the haematologist described them as 'orphan' conditions when compared to other higher profile and less rare conditions.
Totally they do and I am increasingly convinced there is a natural remedy for all Their 'Modern Ailments' created by them to sell their drugs, but because these various natural remedies are exactly that 'natural' they're very difficult to patent and therefore very difficult to profiteer from
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