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 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.
At the moment, we are focusing on asking anyone in the SMA community whose child was diagnosed with SMA Type 1 after 7 months of age to tell us their personal story. This is so that we can pass this on to NHS England to highlight how the new interim policy that will only fund children diagnosed by 7 months of age to access the EAP. It will also highlight how important it is to educate health professionals about SMA and early diagnosis. Please email your personal stories to: firstname.lastname@example.org
Once we know the ‘next steps’ from NICE, we will be letting 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.