On 23 August 2017, TreatSMA along with SMA Trust, SMA Support UK and MD UK signed a letter addressed to the Head of Specialised Commissioning Team at NHS England. We urged a review of the published commissioning policy for inclusion of SMA 1 patients in the Expanded Access Programme of nusinersen.
The letter expressed our objection that the EAP should be limited only to babies younger than 7 months and only those with two copies of the SMN2 gene. We believe that these limitations are unfounded and wrong.
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Calling on all the community to ACT NOW to avoid losing treatments!
Currently, there are two approved treatments for SMA: risdiplam and nusinersen. These treatments were initially approved temporarily under Managed Access Agreements while the NHS and NICE gathered data to assess their cost-effectiveness. Now, as these agreements come to an end, both treatments face a crucial review.
NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam
SMA UK are proud to join together with Treat SMA and MDUK to bring you this webinar about NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam. 2024 sees the end of the managed access agreements (MAAs) for the two treatments. An expert committee will gather to assess the new clinical and real-world evidence, along…
Let the battle begin
This year the Managed Access Agreement for Spinraza and Risdiplam expires. The MAA was put in place five years ago so the pharmaceutical companies could gather more evidence to resubmit to NICE for approval on the NHS with Biogen extending their MAA by a year.