Today I received the fantastic news that non-ambulatory patients with Spinal Muscular Atrophy (SMA) type III will now be able to access nusinersen (Spinraza), a life-changing treatment, via NHS delivery services https://www.nice.org.uk/…/nice-announces-more-people….
This is especially good news for my constituent Jake Ogborne, who is 20 years old and lives with Spinal Muscular Atrophy type III. Jake was cruelly excluded from previous access criteria as he is not able to walk. I first spoke to Jake’s family in 2017, and I have supported them as they have campaigned for years to have these access criteria amended.
Since then, I helped bring Jake’s fight for access to Spinraza to Parliament for Rare Diseases Day 2020, and his case has seen coverage from local and national news outlets, in order to raise much-needed awareness. Jake even had the opportunity to discuss his story on BBC News last November https://www.facebook.com/watch/?v=303436733995933.
This has been a long journey, but it has been worth every minute to hear news of this brilliant decision.