What would it cost to add SMA to newborn screening? 

12 January 2026

When the media and online world are full of stories saying different things, where can you go for reliable information?

Reliable information

Our PIF TICK certification means the health information we share is something you can trust – based on reliable and up-to-date evidence, with input from medical experts. 

We’re proud of being a source of trusted information, which is why we want to address something that has been appearing in recent days.  

Newborn screening for spinal muscular atrophy (SMA) is something we’ve long campaigned for and we’re working with colleagues in the NHS and Industry to understand the full cost implications of introducing it. 

The cost of adding SMA to existing newborn screening

From speaking to multiple sources, we understand the cost of adding SMA to the existing newborn screening test to be £4-£5 per baby. This is just for the initial screening; there would be additional costs for follow-up tests if the result were positive. 

However, on Thursday 8 January, a figure of 36p began circulating across broadcast and online media. This information, and the source provided, are unverified, whereas the £4-£5 is based on expert advice and published data. 

This is still a low cost for a test that can lead to early diagnosis and treatment, which doesn’t just change lives – it also reduces pressure on the NHS. When treatment starts too late, babies often need more intensive care, have more hospital stays and face far more medical care over their lives.  

What does this mean?

The evidence is convincing, and the case is clear: newborn screening for SMA is already used around the world, treatment works best when started early, and every day without it means more families face a future that could have been very different.  

We will continue to work with partners to speed up the introduction of newborn screening for SMA, while also remaining committed to providing accurate information for everyone affected by muscle wasting and weakening conditions.