I read a fascinating blog post the other day by Lisa Emrich on the cost of Disease Modifying Drugs for MS. It was pretty old (March 2011), but it's only become more relevant over the last couple of years.
I inject Avonex once a week into my thigh. This is provided to me at no cost by the National Health Service. I knew that this was eye-wateringly expensive, but I really had no idea.
That's a lot of money. When you factor in the likely cost of visits to the neurologist, various scans and blood tests and things, then I am well aware of how lucky I am to live in a country where the burden of my treatment is carried without question by the state.
As Lisa's post highlights, the company that makes Avonex reported total sales of something like $2.5b in 2010. According to a MarketWatch report, "the multiple-sclerosis market could grow to $15 billion by 2015." (The multiple sclerosis market, btw, is people like me...).
When you bear in mind that none of these drugs are claiming to do anything other than *maybe* slow down the progression of an otherwise incurable condition, and there's actually not much evidence that they even do that and certainly no way of me knowing if my weekly injections are working for me, that's a remarkable amount of money.
Doesn't it make you think, though: how much is it going to be worth for a drug company to fund the research into an actual cure for multiple sclerosis? Is it going to be anywhere near as much as they currently make out of these disease modifying drugs? Hmmm. Not likely. Apart from anything else, I have injected Avonex every week since the Spring of 2009 and, unless something changes, I'm going to be taking it indefinitely. That's a regular revenue stream that might last for decades and can be regularly squeezed with price increase. Unless the cure is a drug that I have to take on a similarly regular basis, then it's not likely to be as worth anywhere near as much, is it? A one-stop solution? Forget it. So what's their incentive to change the status quo? Apart from perhaps to find a next generation version of the same thing that might entice people to switch medications, not much.
Isn't that an incredibly depressing thought?
I suppose I should be grateful that, although I may be worth tens of thousands of pounds a year to the drug company, the NHS in Nottingham put me under absolutely no pressure to choose one drug over another. Budget was simply not a consideration: I was given all of the information about the various options (including a 'do nothing') and was able to make a completely free choice without cost coming into it in the slightest. It wasn't even mentioned. Not once. Isn't that an amazing thing? I know it's not the same everywhere in the UK - my younger brother was put into the hands of a drug company funded nurse fairly early in the process - but here in Nottingham I was encouraged to make the choice I thought was best for me. If I ever change my mind, I will be able to change my mind.
Still, for all that the NHS is a unique and wonderful thing, it's still an uncomfortable thought to think of myself as a drug company revenue stream that can be milked. It's also pretty unsettling to think that this simple economic fact is going to influence the funding decisions for the research that could find a way of getting rid of this damn condition for good.
Two years late, but thanks for the thought-provoking post, Lisa.
this is thought that i've often had myself in my more cynical moments. someone actually posted that chart to my blog as a comment to just such a cynical post!ReplyDelete
but this is quite interesting, which i picked up on Facebook only this morning:
"A team of Ottawa doctors is preparing to publish a full report on its breakthrough multiple sclerosis treatment study that has so far eliminated the disease in those treated."
or even http://www.ms-uk.org/index.cfm/bonemarrowReplyDelete
wow - thanks for that link Steve. That's amazing and I had no idea. Very exciting. This post was actually prompted by something I read a few months ago about the price of retro-viral HIV drugs, but it got me thinking. I know I'm one of the "lucky" ones, both in terms of my relatively benign (so far) MS and the fact that I receive such good treatment for free. The price of this stuff is just incredible though. How much for a single injection? £700? ouch.ReplyDelete
Thanks for the link, honeysuckle. Shocking but sadly not surprising. There's a lot of money at stake here, after all. What really gets me is that there is actually very little evidence that any of these drugs are really doing anything. My lack of relapses *might* be down to the Avonex, but no one can prove that. I chose to do something rather than to do nothing, but no one can say that I wouldn't have had the same result with no treatment. The NHS is great, and although my brother had a drug company nurse where I've had an independent MS Nurse, it wasn't until after he'd made his drug choice, and he's subsequently been able to change treatment without any bother. Of course, when he did have an Avonex nurse, she made sure he had all the latest gear - autoinjectors and the like - and presumably just billed the NHS. I'm old school and just stick the damn needle in by hand.ReplyDelete
Possibly not unrelated to this, the neurology business hasn't exactly covered itself in glory in response to the whole CVSI thing either - it could be nothing, but the way these doctors -- who have offered us nothing for so long -- have so little empathy for how people like us are yearning for a proper answer to this horrible condition.
Maybe it's like the oil industry refusing to put real money into researching alternative energy.... they just won't make as much money, plain and simple. Ugh.
(sorry - slightly fractured English at the end there. In my defence, I was rewriting a much longer comment that got lost and was in a bit too much of a hurry to get myself off to bed!)ReplyDelete