Forum

Fampyra and postcode lottery

I understand that Fampyra has been approvedby NICE, but it is down to individual health authorities whether to fund.

In the South West, funding has been refused but the decision is going to appeal (not sure what this process involves)

Can anyone advise on:

  1. Have you been successful in accessing the drug in your area? (if effective for you will help with walking)

  2. Whether there is anything that can be done to support the appeal - have tried asking local MS society to take this up, but got nowhere!

Thanks

Hi

I was under the impression that Fampyra was licenced but not approved by NICE but that might have changed. Locally (East Midlands) the drug may be obtained privately but not on the NHS.

Are there any NHS Trusts which are funding Fampyra?

Anne

Don’t know where you are in the South West, but read on …

In July I was told that my name would be put forward for a Fampyra trial.
Since then? Almost zilch!
Oficially, the word in August was that holidays had gotten in the way of discussions about this. After that … … … …
However, in late July, I had been told by another NHS professional (just an acquaintance) that the Wiltshire PCT had refused to fund Fampyra.

Now, there are two things about Fampyra.
1 - The manufacturers provide a 4 week supply FREE via the NHS to each prospective user.
2 - The trial period to determine if it “works for you” is two weeks.
OK, so this is a clever bit of marketing, but if it works for you, and NICE have approved it, and your consultant prescribes it, then the NHS Constitution says that you should have it. I interpret that as meaning that the PCT should have to justify each refusal. One can only speculate that any PCT has put the word out that they will not fund it as a way of making sure that it is not prescribed - or am I being cynical?

On the other hand, Fampyra does not work for everyone (say, about one third) and of those it does, only about one third show any real benefit. The chance that it would really benefit you is about 11%
Initially, I was quite excited, then I got resigned, now I really do not know if I would even take an offered trial.

Geoff

Fampridine for the improvement of walking ability in patients with multiple sclerosis

Commissioning decision in the South West - 2 page summary

I asked my neuro about getting Fampridine but there is not the funding available in the south east.

mary

Hi all, I could talk about Fampyra for hours but if you read my previous post it’ll explain my situation. I get 4-AP(immediate release form of Fampyra) from Skips pharmacy delivered from Florida to Belfast for £40 per month. I find 4-AP works just as well as Fampyra for me as it’s effectively the same drug but 10% the cost. http://www.mssociety.org.uk/forum/everyday-living/4-ap-uk Hope it helps Andy

My neuro has told me that the price has recently been dropped from £5,000 to £2,500. I am considering trying it if the botox I hope to get does not help me. I have not got official dx of MS.

Moyna x

Like others of you, I asked my neuro about this, and he said the same as Geoff, above : ‘this is a clever bit of marketing’ and I kind of left it. However, any improvement to my walking would be really welcome (understatement!) so I am very tempted to try it for 4 weeks and if it helps, to try to source it in the same way as AndyB.

Thanks for the info

B x

I have been on Fampyra for seven weeks - paying for it myself - really interested to hear I might be able to get a cheaper version. Have posted about the good effects it has had on me on several different threads but don’t know how to put references in here ( new user). Anyway, it’s probably good to put everything I know in one place. First, Fampyra is advertised as a walking drug, but I think this is just the drug company hanging its hat on a peg with no other hats on. Fampyra improves the transmission of messages through nerves damaged by MS. So it has a systematic effect. I’ve seen improvement in my walking, my bladder control and the amount I’m sleeping in the day (from loads, about to start on Modanifil, to very little). Someone who posted on another thread had seen improvements in cognition. I have also seen a post from someone who had a very bad reaction to Fampyra. NICE has not looked at Fampyra and has no plans to. I know this because the NHS North East Treatment Group (Netag) have published an advisory report on Fampyra and they asked NICE specifically and referenced the answer in their report. Their report wasn’t very enthusiastic about Fampyra. They only considered it as a walking drug and they were worried about the expense of getting physios to check if it worked. You can google this report if you’re interested but bear in mind that they might have come to a different conclusion if Fampyra wasn’t just labelled as a walking drug. Finally, the two big trials the drug company did saw improvement in walking speed in 33% of participants in one trial and in 45% in the other trial. The results might have been better if they had been looking at other functions besides walking. Or they might not. I think this might be a break-through drug for people with MS but we need more trials, on more than just walking speed. I rang up the MS Society to find how this can be made to happen. Their answer was that the MS Society funds some trials suggested by neurologists - they don’t take suggestions from the general public because a drug trial is expensive, takes ages and is done by someone who’s an expert in the field. As luck would have it, that is exactly what my neurologist is, so I will be talking to him about it when I see him in March. I think it’s quite likely he won’t be up for it and even if he is, it’ll be years before he could set up a trial and get results from it. It would be really interesting to hear if anyone is on any kind of trial. In the meantime, if anyone gets a chance to try this drug, I’d say give it a go. The effects of it don’t last once you stop taking it so, presumably, bad effects wouldn’t last long (in fact you have to take it every twelve hours on the dot, which is a pain but worth it for the good effects). Hope this is useful - please let me know if you know about any trials being run or coming up

Hi all

When i seen my neuro last december {2011} he said i was going to be top of the list for fampradine lol! but when i seen him in november {2012} he said it was not going to be available he didnt say why but i assume its because of the cost.

What to do for the best now, it seems to be working for some people so do I look into getting it privately?

any suggestions?

Karen

Your neurologist can prescribe it privately (I’m not sure if all of them will do this). I wouldn’t bother asking your GP. I asked mine and he checked with his prescribing advisor and was given a very firm no, this drug is for specialist use only

Sorry to say that the improvements I saw on this drug now seem to be reversing themselves. My walking is worse, bladder control worse and I’m sleeping in the day again. B*mmer.

I got worse when I stopped taking the Fampyra for a few days. My walking did anyway - nothing else changed.

Hello all,

As I understand things, Fampridine was rejected by NICE because it does not prevent you falling over and possibly breaking bones. The fact that you can walk better and more quickly and so improving the quality of life was ignored, NICE did not think that was relevant.

As far as I know it was submitted to NICE again but the cost of the drug meant that the Pharma company scored an own goal. The Pharma company has agreed to underwrite a 4 week trial. You can find out if it is effective but from then on its up to the PCT or what ever its called these days to cough up or otherwise.

There is specialist unit at Queen Sq in London but I believe thre is a huge waiting list.

I know the answer is a bit woolly.

Patrick

It has not been rejected by NICE. It has not been looked at and they have no plans to look at it. Local health authorities have to make their own decisions about it. Most of them are saying no but you can get it in Dudley.