Joint charity letter on access to Spinraza

Published Date
Clare Lucas
Spinraza SMA treatment

Earlier this month we shared the latest update from NICE about the appraisal of the SMA treatment Spinraza. Today, we have written a joint letter, alongside SMA UK and TreatSMA, pressing NICE, NHS England and Biogen calling on them to be as flexible as possible in their negotiations so that a positive outcome can be reached at the earliest opportunity. As an act of ‘good faith’ in their commitment to the ongoing discussions, we are urging all three parties to agree, with immediate effect, to implement a ‘bridging solution’ for access to Spinraza for any new infants diagnosed with SMA Type 1.

You can read the letters here:

We share the frustration of the patient and clinical community about how long this process has taken. We know that every day counts and will continue to work with the other charities to find a solution that brings this treatment to families. We will share further news and developments about the appraisal process when we receive them.

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