Spinal Muscular Atrophy and COVID-19

Following some confusion in the SMA community Patient Advocacy Groups have reached out to clinicians with questions and with coordination through MDUK we can now offer some insight.

COVID-19 is a very new virus and unfortunately no one knows the full extent of the potential effects on someone with SMA. The clinicians have kindly provided some answers to help try to understand what it could entail for someone with the condition. The document can be viewed by clicking here.

This document contains important information on the effects of Covid-19, the treatments, possible outcomes and what we can expect in terms of medical intervention.

Also attached to this is a COVID-19 information sheet for patients with neuromuscular conditions. This comes from The world muscle society and covers all neuromuscular conditions, not just spinal muscular atrophy. We are suggesting that everyone print out the relevant information from here and keep it in their care plan in case any problems arise.

For more information please email Kelly at kelly.jones@treatsma.uk

 

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