Hello friends, what a day I’ve had. My brother-in-law got me and him an appointment with an MP in Westminster today. It was about the decision by NICE to turn down Ocrevus for PPMS folk, like my sister. It was great to have the chance to talk about MS with someone who knew little about it, about our everyday battles. About the fact that I have an MS nurse but that my sister, in a neighbouring borough, does not. I told him about Ocrevus being the only viable option for PPMS folk, and what a joke it is that NICE says that I am worth the investment (RRMS), but my younger sister with young kids and a life in front of her, is not. Because the cost of Ocrevus outweighs the cost of her longer-term care without it, apparently. I also explained that, quite rightly, not everyone eligible for DMTs chooses to go that route, for good personal reasons. What I am arguing for, is that everyone deserves to have the choice.
Anyway, he was so lovely and receptive. Also, quite shocked. I put the NICE consultation response document in front of him. I also took the liberty of printing a page from Shift, showing the posts on this subject, a balance of pros and cons. He told me he is going to write directly to the Secretary of State, and is making a request for an Adjournment Debate on this subject. He is going to contact the MS Society, some hospitals and other health organisations. All in all, a good days work. And the funniest bit, is that on a desk in Parliament, is a string of posts with you guys on it @rsloan89, @seanachai, @watsoncraig, @lightning87, @stumbler (naturally), @peterfrancis, @pug1, @ londonlad, @highlander, @mermaidia11, @bullman, @robb, @fxmx, @hank, @lynb.
Nice work, team. It may not go anywhere, but at the very least, some people are coming to understand who we are and what we have to deal with everyday x
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