Muscular Dystrophy UK is continuing to work closely with SMA UK, TreatSMA, clinicians and NHS England to ensure that people eligible for Spinraza are able to access it. We are aware that whilst many children are now accessing treatment across the UK there are delays preventing adults from accessing treatment at present.
Whilst children with SMA Type 1 have been accessing Spinraza for years, the treatment is completely new for adult services across the UK. This means that a lot of planning and negotiating is required to set up the clinic and theatre space and staffing that is needed to deliver the treatment to patients. Clinicians are working hard to do this so that patients can start accessing treatment.
Along with SMA UK and TreatSMA, we want to identify what the problems with planning the roll-out of the Spinraza treatment programme are. To do this, we want to hear from all adults who live in the UK and who have 5q SMA (Types 1, 2 or 3) to find out who does and who doesn’t want to access Spinraza.
You can take the survey here. The survey will close on Sunday 15 March.