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Fund Spinraza for all SMA patients on the NHS

Submitted by David Ogborne on Tuesday 29th September 2020

Published on Wednesday 21st October 2020

Current status: Closed

Closed: Wednesday 21st April 2021

Signatures: 5,004

Relevant Departments

Tagged with

Access ~ Agreement ~ Campaign ~ England ~ fund ~ Hundreds ~ Jake ~ Managed ~ NHS ~ NHS England ~ Nice ~ The NHS

Petition Action

Fund Spinraza for all SMA patients on the NHS

Petition Details

Spinal Muscular Atrophy (SMA) is a serious degenerative condition that can be treated with Spinraza. Yet NICE’s Managed Access Agreement for Spinraza means many SMA patients can't access it on the NHS. The Government, NHS England & NICE should make Spinraza available for all SMA patients.

Additional Information

Jake Ogborne is one of hundreds of SMA patients who could benefit from accessing Spinraza, but who does not meet eligibility criteria for getting it on the NHS. Hear his story at https://tinyurl.com/y2sdlx62 and in this article at https://tinyurl.com/y489zdvl.
Campaign groups such as TreatSMA have long advocated for Spinraza to be accessible for all SMA patients: https://tinyurl.com/y2fxssdz.
Biogen, Spinraza's manufacturer, has collected data to demonstrate its effectiveness for excluded patients: https://tinyurl.com/y4hamxpq.


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