TreatSMA

This is an IMPORTANT video to our Prime Minister Boris Johnson

Members of our SMA community along with the most vulnerable members in our society which the coronavirus poses the greatest threat to have had enough.

On Monday 16th of March, TreatSMA along with parents and carers of children with SMA and other adults with vulnerable conditions came together to produce a video message directed towards the leader of our country.

This is the year 2020 and we live in supposedly one of the greatest countries in the world and yet many of its communities across our land are being forgotten and isolated by our Prime Minister. Instead of protecting the lives at greatest risk, Boris Johnson is putting them in more danger by not acting in the interest of the most vulnerable within our society. We have had Enough. We matter. WHAT ABOUT US?

#whataboutus #wematterto #messageforboris

You can view the video HERE

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