Kerry McCarthy Labour MP for Bristol East
https://www.facebook.com/kerry4mp/videos/2385248264884460
Those of you who follow my work will know that a young constituent of mine, Jake, who has Spinal Muscular Atrophy (SMA), has been cruelly excluded from receiving Spinraza, a new drug to treat the condition, because he does not meet the access criteria. After raising Jake’s case at Prime Minister’s Questions earlier this month, I was pleased to have a further opportunity to highlight the unjustness of the situation he and his family face in the adjournment debate on the last day of Parliament. I hope that with continued campaigning efforts, the eligibility criteria for access to Spinraza can be extended to all SMA patients, as was misleadingly suggested in the original announcement, so that Jake and others like him can benefit