TreatSMA

NICE Announce a Review of the MAA Guidance for Spinraza

NICE have announced they are going to review the MAA Guidance for Spinraza in regards to Type 3 patients.

NICE has confirmed today that they have started reviewing data on the benefits of Spinraza for type 3 patients who can not walk. They expect the make their final recommendations in April 2021.

The full NICE announcement can be read here.

Biogen, patient groups, clinicians, SMA REACH UK, NHSE and NHS Improvements will be involved in the review. The review of the data will look to assess whether new evidence has become available in order to support changing the MAA. As a patient group, we will ensure to community’s voice is heard too.

NICE have also announced that in the interim, they will suspend the criteria for paediatric patients to regain ambulation (ability to walk) within 12 months or treatment is stopped. You can read more on the interim arrangements here; Nusinersen Managed Access Agreement (for treating 5q spinal muscular atrophy)

TreatSMA welcome this news, and we will do all we can to fight for the type 3 community.

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