Letter to Biogen about access to Spinraza

Published Date
Clare Lucas
Spinraza SMA treatment

Recently, the Scottish Medicines Consortium (SMC) announced it had approved the spinal muscular atrophy (SMA) treatment Spinraza for use by children in Scotland with symptomatic SMA Type 1. Whilst we welcomed the news that Spinraza will be available to patients with SMA Type 1 we shared families disappointment that Spinraza was not made available to people with other Types of SMA.

Throughout the SMC appraisal process we made a strong argument, alongside parents, SMA Support UK and SMA Trust, that all individuals with SMA should have the choice to access the treatment.

We know that SMA has been designated an ultra-rare disease which would mean it would be considered differently under the new appraisal processes recommended by the Montgomery Review on Access to New Medicines, published in December 2016. We believe Spinraza should be resubmitted under these new processes once they are implemented.

A key concern raised by the SMC was the cost of Spinraza. We don’t believe that price should be a barrier to people accessing this life-changing treatment. This is why we have written to Biogen with the other SMA charities urging them to urgently review their pricing of the treatment, be prepared to negotiate on price with the Scottish Medicines Consortium and NHS Scotland at the earliest opportunity, and to resubmit as soon as possible in the interests of patients and families. You can read the letter here.

We will continue to work with the other SMA charities and families to fight for access to Spinraza for all people with SMA across the UK.

For more information about the approval process for Spinraza contact our Campaigns and Engagement Manager, Clare Lucas, on c.lucas@musculardystrophyuk.org or 020 7803 4838

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