I am delighted by today’s news that Spinraza – the first treatment for the rare condition spinal muscular atrophy (SMA) – is set to be made available on the NHS for children and adults with SMA Types 1, 2 and 3. This comes after an agonisingly long wait for families affected by SMA, including those in my constituency, as well as a tireless campaign by the Treat SMA community, which I have been pleased to support by writing letters to NICE and NHS England, as well as raising the issue in parliament.

Whilst this announcement marks a huge milestone in the campaign for access to Spinraza, pressure must be kept up to ensure that patients are now given access to the drug as soon as possible. I hope today’s breakthrough will also give hope to those fighting for access to drugs for other rare diseases, including the drug Orkambi for the treatment of cystic fibrosis, which I have been campaigning on for some time now.


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