Last reply 2 months ago
petition for ocrelizumab

Hi all having P.P.M.S. I was looking forward to ocrelizumab as the only treatment, that is until the nice people at N.I.C.E. said they wouldnt pay for it. I feel really let down , and angry having paid in to the system all my working life , I am wondering if others feel the same, and if we should start a campaign on social media. I am not on facebook but have just come across the site change.org where you can start a petition to raise public awareness and get signatures. If all the people with M.S. and their friends and families signed we could get a lot of signatures, WHAT DO YOU THINK ? anything that keeps me out of a wheelchair for another 7 years is a result by me.!

yours
hank

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stumbler
2 months ago

@hank , it is disappointing to say the least.

There’s already action underway to try and get this decision reviewed :-

https://www.mssociety.org.uk/what-we-do/news/nice-rejects-ocrelizumab-for-people-with-primary-progressive-ms


hank
2 months ago

thanks stumbler, wasnt awareof this but i guess anything we can do to keep it in peoples minds helps


sarahshift
2 months ago

Hi @hank

We’ve drafted a template that you can use to write to your MP about this: http://bit.ly/2xa7IOx

Feel free to share it!

Sarah


amyshift
2 months ago

Just jumping on the back of this, you can find your MP and their contact details here: https://www.parliament.uk/mps-lords-and-offices/mps/


vixen
2 months ago

Hi @hank, there was quite a long thread about this the other day if you type Ocrevus into the search box. Don’t lose heart, there are lots of fighters out there, including from the medical world. Keep waging the war x

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