As the Community representatives were taking part in NICE proceedings in Manchester, in the Commons, a Yorkshire MP has questioned the Health Secretary on Spinraza.
Julian Sturdy MP asked Matt Hancock about access to this “life-changing drug” in the UK. Unfortunately, the Health Secretary’s response, which squarely put all the responsibility on NICE, has only reinforced our perception that the Health Department fails to play a policy leadership role in such a key area as access to treatments in rare diseases.
We are grateful to Julian Sturdy MP for taking up the case of SMA treatment.
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