241 patients enrolled on EAMS

We received news yesterday that 241 people are now enrolled on the EAMS for Risdiplam.

This is fantastic news as it means patients who would not be receiving treatment without EAMS now are. We would like to thank everyone who pushed for EAMS, as well as Roche for committing to funding EAMS for so many patients- this is a huge financial commitment to the SMA community in the UK.

Also, we would like to thank people who supported our campaigns at Cambridge and IoM. We hope that all who have reached out to TreatSMA for help with regards to getting access to EAMS has now access.

Latest Posts

  • Calling on all the community to ACT NOW to avoid losing treatments!

    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.

    Read more

  • NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam

    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…

    Read more

  • Let the battle begin

    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.

    Read more