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The Morale Monologue #6 – SMA Not Funded in the UK
In this episode of the Morale Monologue, I’m going to be discussing a recent decision that Spinraza (Nusinersen) will not be recommended for funding by the NHS (National Health Service). The NHS, is one of the governing bodies in the UK. This decision was made in the past few days by NICE (National Institute for Health and Care Excellence). This devastating decision will impact many infants, adolescence and adults living in the UK. We, in the SMA community, need to make our voices heard, and I urge everyone to do their part so that those of us with a voice can defend those who live in the UK, who apparently do not have a voice at the present time. Please click on the links below to help our fellow SMAers in the United Kingdom.
Helpful Links:
SMA Trust website: https://smatrust.org/managed_access_spinraza/
National Institute for Health and Care Excellence website: https://www.nice.org.uk/guidance/indevelopment/gid-ta10281/consultation/html-contentBe sure to subscribe to the SMA News Today YouTube channel so that you don’t miss an episode of this vlog, and you can also connect with me right here on the forums page.
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5 Replies
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It’s a real shame. While acquiring Spinraza is a very personal decision, there’s no reason that the SMA community shouldn’t have widespread access to it. I really hope N.I.C.E. does reverse its decision. Thanks for breaking everything down in this video.
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They not only need this treatment, they DESERVE it. Thanks for your comments Kevin.
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Thanks for keeping us informed Michael. My heart breaks for all the families that don’t have access to this treatment.
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It’s heartbreaking. They need to hear our voice. Thanks for your comments DeAnn.
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That’s the first I’ve heard of that. I live in the UK and it was a glimmer of hope on the horizon! Thanks for thinking of us.
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