Had an appt. with my ms nurse yesterday to confirm choice of rebif ( having failed with Copaxone ) and interestingly she said that once Gilenya becomes available to my hospital then anyone who has tried Copaxone does not have to try an interferon before going onto Gilenya. It’s a very recent decision but I’m sure a welcome one to anyone who is not doing well on injectables. However it costs the NHS £16.000 per year to administer just for one person. I was gobsmacked. Apparantly Rebif costs £8.000 pa but I don’t know about Copaxone. Gilenya gives about a 50% reduction in relapses but can have some pretty severe side effects including slower heart rate, increased suscebtibilty to both serious and not so serious infections and viruses like tonsilitis and influenza and can make it feel like your ms is worse with fatigue etc. but fatigue issues should wear off after time. She also said that you have to spend nearly a whole day in hospital after taking an initial dose so that they can monitor you for any heart problems. Must be pretty powerful stuff.
Hello Fudgey,are you ready to have your bob smacked again when I tell you that globally MS is worth £7- £8 Billion a year,to the drug industry and the figure is rising all the time.Perhaps it’s no wonder the drug companies aren’t happy when anything appears which isn’t making them money that helps us peeps with MS.
What will they do when they’ve cured us all?
Good luck with your treatment,
A lot of money sure.
But the whole lot of ya are worth every penny
Sell the cure.
Hi Fudgy, it isnt our fault that drugs cost so much.blame the pharma companies.
I am on a lot of meds and my hubby`s RA injections cost thousands. Again, not our fault.
So take your meds and let someone else worry about the costs.
I think it’s pretty disgusting pharmaceutical companies really hold the NHS to ransom on the prices they charge for drugs over the whole board!!! Does anyone ever wonder if there was a cure for certain diseases would it be made public as the industry is worth billions and billions!!!
They`d go bust overnight if a cure was found.
Oh dont forget a cure for me too…for those of us coping with nasty HSP.
hi Poll, I didn’t mean for anyone to think that I was blaming the nhs or anyone with ms and any other illness for the cost of drugs. I suppose I was incredibly naive that I thought that drugs costs were nowhere near this much. It just makes it so unfair that these costs are crippling the nhs because the drug companies seem to be greedy beyond belief.
Compare what they charge us with what they get away with in the US !!
We live in a capitalst society! What do you think pharmaceutical companies are set up to do? Make money, just like every business.
If you don’t want people making money on the back of pharmaceutical companies, and you have a private pension, do you watch which companies you are investing in?
Also if you have/had an endowment mortgage?
A lot of local councils invest money to help make ends meet too.
You may have to move to a communist country to avoid pharmaceutical companies making money.
That sounded very sharp, now I’ve read it back.
It wasn’t meant to be - it was a lot more lighthearted in my head
It’s ok, Ellen…I got it !!
I completely agree with EARitchie. It is pretty disgusting that corporations make billions out our misery. I certainly don’t agree with you Ellen, we do live in a capatalist society but we don’t have to put the almighty BUCK before people’s welfare. That’s just crass.
And here is another example of supply and demand which actually makes you think about how lucky we are to have an NHS. http://www.washingtonpost.com/blogs/wonkblog/wp/2013/03/15/why-an-mri-costs-1080-in-america-and-280-in-france/
I think the problem is the NHS tends not to investigate cheap treatments if you take Gilenya then it was based on a natural produce as I recall coryceps mushrooms. Pharma then synthesizes the active ingredient patents that then test it to licencing standards. Then they effectively have a monopoly of that product for a number of years, hence pricing.
If the NHS would investigate the natural treatment in the first place and offer that for virtually nothing in comparison to licenced drugs then that would give effective competition to pharma and affect the price.
The problem is that price is a concern of everyone since we fund the NHS but it is a concern in another sense because it makes rationing of drugs absolute inevitable. This means if Gilenya is a very effective treatment for MS then many of those who may benefit will not get it.
Yes we are extremely lucky to have the NHS but how long will it exist in anywhere near its current form if nothing is done about rocketing drug prices?
I have a lot of problems with the pharmaceutical industry, not least of which it really sticks in my throat that they use normal business practices (ie ones that are probably not always terribly ethical in most people’s eyes) and they make a substantial profit out of something that helps people. It just doesn’t sit right somehow. However, the fact is that we need them. What’s more, we need them to be profitable. Because that’s the only way that there’s a hope in hell of us ever finding a cure for MS, never mind new and better treatments. Because research costs an absolute fortune - we’re taking hundreds of millions for just one new drug (that may not even get approved and therefore never earn a penny!) - and a non-profit or unprofitable company will never ever be able to afford to do it (and I include the NHS in this).
DMDs seem crazily expensive so the conclusion that a lot of people make is that the companies who make them must therefore be profiteering filtered words. But are they actually as bad as you think? Let’s have a look at the numbers.
I hope this comes out OK - it’s copied from a spreadsheet I have - the data are taken from the FTSE about a year ago (I haven’t time to update it, but I can’t imagine that it’s changed too much since then). Return on Capital means the amount of money made in comparison to the amount of money spent to get it. For example, if I spend £100 and make £10 profit on it, my Return on Capital is 10%.
|Industry Sector||Return on Capital (%)|
|Aerospace & Defence||25.38|
|Software & PC Services||23.81|
|Household Goods & Construction||21.01|
|Gas & Water||12.09|
These data show that the pharmaceutical industry does pretty well - it comes in 6th of 15 behind things like the companies who make the software you are using to read this, the companies that supply the power to charge up the thing you are reading this on, the companies that make the watch/jewellery/perfume/etc you are wearing, etc.
But how come they are 6th and not 1st, when they are charging prices that look like daylight robbery?
A clue: did you know that if pharmaceutical companies stopped doing research and merely sat on their backsides selling existing products they would probably make somewhere in the region of twice as much money, maybe more?
Yep, research is very very very expensive. It’s often tens of millions just to run one decent clinical trial. Now add all the costs that are involved in even getting the drug to the trial stage and then multiply that by the number of drugs and the number of trials done. (A significant amount of these costs are a direct result of government red tape btw.) Then remember that only one out of maybe a couple of hundred research drugs ends up actually being used by the public, ie ends up making any money at all. Then factor in the fact that a new drug has a limited patent life - that’s the length of time that the company that came up with it can sell it without others copying it and making money on it without having paid a penny to develop it. (Incidentally, the patent starts as soon as the drug is registered, which is often many years before it finally gets approved - and which means even less time to try and recoup some profit from it.)
So, because pharmaceutical companies are businesses, ie they have shareholders and they are trying to make a profit, they have to sell the drugs that finally make it through the trials and approval processes at a high enough price to make a profit over the exorbitant costs to get there plus cover some of the costs of drugs still in development and the costs of drugs that have failed to get through development, and they have to do this in a limited time.
Are drugs too expensive? Yes. Is it pure profiteering? No.
I can’t say the same of the companies that do no research: the ones that make generic drugs - copies of the drugs that are now out of patent. These drugs are cheaper for the NHS, yes, but the profit made by these companies is astronomical - and they haven’t done a damn thing to justify it.
Incidentally, a cure would make billions in profit for the company that finds it. Why on earth do you think pharmaceutical companies invest so much money in research to find cures?! On a related note, how do you explain the fact that vaccines are one of the fastest growing areas in pharmaceutical research?
Btw, a minor point since someone brought the point up: drug prices came DOWN 7% last year in Europe, despite increasing costs due to government red tape, which is also lengthening approval times and therefore shortening the time left on patents. It’s no wonder that pharmaceutical companies are beginning to spend their research money outside Europe - also meaning that Europeans are not benefitting from being part of those trials, that the new drugs may not be as effective in European populations because they have been developed in areas with different genetics & environments and that predominently Western diseases may not get anywhere near as much investment in the future.
Am I a fan of the pharmaceutical industry? No. Not particularly. But I’m less of a fan of those who bellyache about how much money they make. I for one am rather glad they make a profit. I’m also very glad that they are not a monopoly and that the pharmaceutical industry is actually intensely competitive. One of these days maybe the combination of profit and competition to get there first will lead to a cure. Because altruism sure as hell won’t.
Money grabbin !@£$%^&*(
It is crazy, all that money for drugs that only stop a 1/3 of relapses.I can imagine a cure would be expensive but alot cheaper in the long run.
I agree. I was shocked too. However, so much is sadly a purely financial decision these days. Even though the DMDs cost a lot, you have to balance that out against the cost of potential long-term stays in hospital. At the last count my information was that that could work out at getting on for a grand a night. Put in that context, although it’s easy to object to pharmaceutical companies high charges, it’s easy to see why it’s in the NHS’s interest to go for DMDs where relevant.
Thanks for your thoughts on this subject. I suppose my concern over the huge prices of various drugs is that they can be and indeed are being refused to patients under certain health authorities simply because they are just too expensive and some of these drugs are life prolonging ones. It just worries me that soon drugs like dmd’s for instance could be very limited to some people and maybe they will even be denied them. I do appreciate that companies have to make a profit, there would be no point in being in business if they didn’t. I suppose it may all come down to poor government funding to the nhs or is it that some of the regional health authorities are not managing their budgets properly. It’s a debate which could go on forever!!!