Scotland expands spinal muscular atrophy treatment access to babies diagnosed before symptoms start

7 September 2026

Nusinersen (Spinraza) has been accepted for NHS use in Scotland for babies diagnosed with spinal muscular atrophy (SMA) before symptoms develop. The treatment was already available after symptoms had appeared, but this decision expands access to babies diagnosed earlier, including through Scotland’s newborn screening programme.

Over the last ten years, we have seen three treatments become available for people living with SMA. During this time, access to these treatments has also expanded, giving families and clinical teams more options than ever before.

Today’s announcement is the latest step forward. Babies diagnosed before symptoms begin will now be able to access nusinersen if it is the right treatment option for them and their clinical team.

This means all three available SMA treatments, nusinersen (Spinraza), risdiplam (Evrysdi) and onasemnogene abeparvovec (Zolgensma), are now available right across the UK as treatment options for babies diagnosed before symptoms start.

Why early diagnosis matters

With a condition like SMA, time is everything. These treatments can change lives, but the best outcomes are seen when babies are diagnosed and treated as early as possible.

This is why we have been calling for newborn screening for SMA to be made available across the UK. Newborn screening is the fastest way to identify babies with the condition and ensure they can access treatment before symptoms begin.

Earlier this year, Scotland led the way by introducing a two-year pilot of newborn screening for SMA. With screening now in place and all three approved treatments available as options before symptoms start, families and clinical teams have more options than ever before to make timely treatment decisions.

No baby should miss out on early diagnosis

In England, Wales and Northern Ireland, all three approved SMA treatments are also available as options for babies diagnosed before symptoms begin. However, access to newborn screening for SMA varies between nations.

In England, newborn screening for SMA will begin to roll out to two thirds of babies in October 2026 while an evaluation takes place to determine whether the condition should be permanently added to the NHS newborn blood spot test. Following a recent UK government announcement, the programme will expand to all babies in England from October 2027.

However, Wales and Northern Ireland currently have no plans to introduce newborn screening for SMA.

Without newborn screening, some babies may not be diagnosed until symptoms begin to appear, potentially missing the opportunity to access treatment at the earliest possible stage.

We are pushing to ensure that no baby in the UK misses out on vital early diagnosis. Wales and Northern Ireland need to follow England and Scotland’s lead and introduce newborn screening for SMA at the earliest opportunity.