TreatSMA

Turkey starts offering Spinraza to all

Health authorities in Turkey decided to offer Spinraza as a standard therapy to all people with spinal muscular atrophy.

Until 1st February, the treatment was available to children with the most rapidly progressing form of the disease (SMA type 1). The recent decision will save health and lives of several hundreds children and adults in Turkey who live with a milder form of SMA.

Turkish SMA families campaigned hard to this to happen and held several protests in support of their right to treatment. Their fight ended in success. Congratulations!

https://www.facebook.com/100008053367202/videos/1855267748084986/

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