Would you want to know about expensive effective walking drug

Suppose there was a really expensive drug that improved the walking of something between a third and a half of MSers who took it. For the ones who it helped, this hypothetical drug would help a lot - improve their walking speed by a third and mean some might go from needing two sticks to only one. And work for PPMSers as well as RRMSers. And the NHS wouldn’t fund it, so it was only available to people who could afford to pay £430 every four weeks. Would you prefer to know it was out there or not know about it?

if the nhs wouldnt fund it, i dont think id want to know, as it would make it worse knowing that it would help that much but because someone thought about money instead of people would make me sad and mad.

i’m pretty sure that it exists. good luck if you try to get it.

carole x

I don’t think ignorance is ever a good thing, so I wouldn’t NOT want to know about a development, simply because it wasn’t not available to me at the moment.

I believe you’re probably talking about Fampyra, which is not a hypothetical, although I’ve no idea if you’re correct on costs to get it privately.

I’m inclined to think that where a drug isn’t available on the NHS, it’s often with good reason (not just money), so personally, I’d be wary of paying the £450 - even if I could - for something NICE has held back on.

I’m sure I remember reading somewhere that although Fampyra aids walking for many, in the short term, some experts believe it might accelerate disability over the long term. So a sort of “live now, pay later” philosophy. That might be OK for some, who’d rather have the better walking now, but let the future take care of itself. Not sure it’s right for me personally, though.

Tina

Sorry - if it wasn’t available, not “wasn’t NOT available”. Duh!

im thinking about free trial, but what happens if it works for me

Of course you should say it here. If i find anything new or something to help i would share on here. Its a free forum where we can discuss all things ms.

It maybe a drug that needs more testing to get through nice. But i for one would want to know.

DMD’s for RRMS would not be available on the nhs if the drug companys didn’t agree to drop the price a few years back.

Darren

Do a quick search on Fampyra, and find a thread that I started last July. You will find one of my posts somewhere in the middle, that goes:

My local PCT and its replacement Committee will not fund it. I understand that most of the SouthWest PCTs will not fund it.

From other posts and PMs, it looks like the success rate is not good (less than 10% have a worthwhile improvement) and some of the side effects really do not look nice. Had a session with a Neuro and an MS Nurse yesterday (lot of chat about my walking) and Fampyra was not mentioned. When I was first told about it, I got quite excited; now, I am not really interested.

Geoff

My original post was a genuine question, for people who don’t know about the drugs available and are interested in hearing about someone else’s experience. I will post separately about my experience, with a ‘don’t read’ warning for people who don’t want to know about this stuff. I have been touched and made proud of this forum by the wide range of different responses that I got to my question - I half thought I was going to get no response or a uniform ‘if I can’t afford it, I don’t want to know it exists’.

I reckon that if you live in pain you are aware that a similar situation exists with SATIVEX.A lucky few are allowed it,but the vast majority cannot have it.The reason given to me was that trial results were inconclusive.I’ve got it in writing from one of the world’s leading pain specialists that the trial was flawed,but that seems to suit my PCT.

Putting “Don’t Read” on a post is like, the episode of Father Ted, when they were on a plane, and Dougal saw “Don’t press the big red button”

Wb

I’d want to know even though I wouldn’t be able to afford it and even though I wouldn’t get any help with funding it from an NHS I’ve paid into all my working life, and even if they supplied it they’d put some awful criteria in place to stop me getting it.

But for me its the same with DMDs only I already know they are there and know they have the ablility to slow progression and I know I meet the criteria - but well…

I know these things but it still doesn’t help me… still I’m glad I know - what a s…t the lack of healthcare can be. So no surprises for me then.

;-( Mary