how you can help
We are working with Muscular Dystrophy UK, the SMA Trust, and the family-led campaign group TreatSMA. Your letters and lobbying of MPs, NHS England and NICE have helped immensely to get the SMA Type 1 EAP funded by NHSE in the UK. Thank you. We are now waiting for Jeremy Hunt and NICE to let us know the appraisal plans for the treatment - again thank you for all your lobbying on this.
You can back MDUK’s ‘Fasttrack' campaign which includes access to nusinersen (Spinraza) by using their template letters to write to your MP and signing their petition asking for the Prime Minister’s help in removing barriers to all life-changing treatments that people would benefit from. This includes nusinersen.
Once we know the ‘next steps’ from NICE, we will let you know how you can voice your views to them on future access to nusinersen in the UK. You can read more about the NICE process, and the process for the rest of UK and what has happened thus far here.