Forum

Fingolimod - Gilenya

I, and I’m sure many others, are hoping this oral drug that is already widely available in USA and Europe will become available in the UK, so I have been following its progress on the NICE website for many months but the committee appraisal dates kept getting put back. :shock: No surprises there then. :roll: This morning when I checked NICE website again it said that the 2nd appraisal committee meeting is due this month so I phoned them to ask when, and it is tomorrow 5th October…but the final decision whether to allow it to be freely available on the NHS will not be made until January 2012! :shock: I would like to know how much input the MSS has had in these appraisals or indeed whether they were asked for their input at all? Also how much pressure have they put upon NICE to get this drug fully licenced and available to all who could benefit from it as it seems to me that MSers are at the back of a very long queue and largely disregarded by NICE. :shock: * note to Admin -we need an ANGRY smilie*

If you look on the main web site you will find a statement about MSS formal response to NICE on this subject. It is interesting that it believe NICE should take into account a survey based on what people with MS think the source of which is not quoted. It also suggests the side effects of the tradition DMD’s may be worse than found in clinical trials again based on anecdotal evidence. It is an approach I have not seen from MSS before so it will be interesting to see if it is successful. I am afraid however I suspect the decision has already been made and they will only take into account what MSS says if it supports whatever their decision is.