Newborn screening for SMA begins – but postcode lottery demands action from MPs

Rob Hastings, Chief Medical Officer | Novartis UK

This article has been created and funded by Novartis Pharmaceuticals UK Ltd, and is intended for members of the general public in the UK

The upcoming Westminster Hall Debate on Monday 22 June at 6.00pm comes at a critical moment for newborn screening in England. MPs will have an opportunity not only to welcome progress on spinal muscular atrophy (SMA), but to address an urgent question: how quickly can access be expanded so that all newborns benefit equally?

The UK National Screening Committee announced last month that newborn screening for SMA will be brought forward to October 2026, marking a significant step towards earlier diagnosis for babies affected.¹ But as things stand, screening will only start in some parts of England.² In practice, this means where a baby is born will determine whether they are offered the test – creating a postcode lottery at the very point when timing matters most to help avoid irreversible disability.³

SMA is a rare genetic condition affecting the nerves that control muscle movement.⁴ It can progressively lead to loss of movement, which may affect the ability to crawl or walk.⁵ By the time symptoms appear – often within the first six months of life – damage may have already occurred and cannot be reversed.³ Newborn screening can help change this outlook. It allows babies to be identified at birth and treated before symptoms begin.¹

Other countries have taken action. Screening is already in place across most European nations and Scotland has begun its own pilot programme.⁶ England is now moving in the same direction, but not yet for all newborns. Under current plans, screening will be introduced through an In-Service Evaluation (ISE) from October 2026.¹ While this approach helps test delivery in everyday NHS practice, it will not cover the whole of England.² Around a third of newborns will not be included initially, and babies in Wales and Northern Ireland are not currently part of the programme.²

For families, the worrying reality is that two babies born on the same day could have very different starts in life depending on where they are born. One may be tested at birth and receive treatment in time to help prevent serious disability. The other may not be tested at all. This issue needs to be addressed.

Bringing more parts of the country into the programme quickly should be a priority. That means getting more laboratories ready, agreeing the practical arrangements, and setting a clear plan for when additional regions will be included. Without this approach, the gap in screening between areas will persist longer than necessary.

There is also a need for clear timelines. At present, there is no public detail on how long the ISE will run, when further sites will join, or when a final decision will be made on a full national screening programme. Without these milestones, families and clinicians are left without certainty.

The long-term goal should be clear: every baby in England, and the rest of the UK, should have access to newborn screening for SMA regardless of where they are born.

Progress has been made. Now is the time to ensure it is felt equally across the country. The Westminster Hall Debate provides a key opportunity to voice your support and drive this ambition forward.

UK | May 2026 | FA-11691408

References

1. UK National Screening Committee. ISE of newborn screening for SMA set to begin in England from October 2026. Available at: https://nationalscreening.blog.gov.uk/2026/05/12/ise-of-newborn-screening-for-sma-set-to-begin-in-england-from-october-2026/. Accessed May 2026
2. SMA UK. ISE to start screening for SMA in England from October 2026! Available at: https://smauk.org.uk/advocacy/28187/. Accessed May 2026
3. University of Oxford. First UK pilot study of newborn screening for spinal muscular atrophy launched in Oxford. Available here: https://www.ox.ac.uk/news/2022-03-11-first-uk-pilot-study-newborn-screening-spinal-muscular-atrophy-launched-oxford. Accessed May 2026
4. Anderton RS and Mastaglia FL. Expert Rev Neurother. 2015;15(8):895–908. Accessed May 2026
5. Muscular Dystrophy UK. 5 Things You Should Know About SMA. Available here: https://www.musculardystrophyuk.org/news/5-things-you-should-know-about-sma/. Accessed May 2026
6. SMA NBS Alliance. Status Map. Available at: https://www.sma-screening-alliance.org/map. Accessed May 2026

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