Hi there,
I'm first of all, really sorry I haven't been on here for a while. I've been really busy with stuff, but I know that is not really a good enough excuse not to keep you all posted! I will try to post properly soon, but in the meantime I wanted to ask you for your help.
I don't know if any of you have heard of NICE (National Institute of Clinical Excellence) in the UK, but they are proposing to withdraw two anti TNF treatments - Infliximab (Remicade) and Adalimumab (Humira) for maintenance use in Crohn's patients. This could affect me personally, as I'm currently being treated with Infliximab (Remicade) every 8 weeks, and to be quite frank, it is my lifeline, and I would not want to imagine a life without it. It would be truly devastating as I have tried all other treatments and they have all failed. I know there are many more people in the same boat as me too.
Now, there is a petition to sign (for UK residents and expats only unfortunately) to help stop this happening. I would be so very grateful if you could sign this (and get your friends and family to sign too) as there is strength in numbers. We need 200 plus signatures by 15th October, so not very long. I thank you so much in advance for your support - it is greatly appreciated.
If you want to know any more information, there is a document on the NACC website (National Association for Crohn's and Colitis). Please visit: http://nacc.org.uk and click on the box which says "NICE Anti TNF therapy guidance".
Thank you so much again, best wishes to you all, Ruth x
2 comments:
Ruth - I am so sorry that this could potentially happen to you. I would like to sign the petition but ama US citizen. why on earth would the UK take it off the market for Crohn's patients? I've been taking it for years for maintenance and have been doing very well.
please help me understand why they would do this.
Matt
(Washington, DC)
Ruth - haven't talked to you in a while. Hope you are doing well. Any update on how this turned out? My doc just prescribed Humora for me - I'll start taking it in about a week or so. We'll see if it makes a difference for me.
Talk to you soon.
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