England to Screen All Newborns for SMA by October 2027 After Jesy Nelson Campaign
Updated
Updated · bbc.co.uk · Jul 16
England to Screen All Newborns for SMA by October 2027 After Jesy Nelson Campaign
3 articles · Updated · bbc.co.uk · Jul 16
Summary
Hundreds of thousands of babies in England will be tested for spinal muscular atrophy under a national study, with rollout starting in most of the country in October 2026 and expanding fully by October 2027.
Early diagnosis is critical because SMA gene therapies work best before symptoms appear; the disease weakens muscles used for movement, breathing and swallowing, and the most severe cases can be fatal before age two.
Jesy Nelson, whose twin daughters were diagnosed with SMA and told they may "never walk," called the move a victory for affected families after campaigning for newborn screening.
Oxford University scientists will lead the study, using the standard newborn heel-prick blood sample, and the results will help the UK National Screening Committee decide whether to make SMA testing permanent.
As England screens all newborns for SMA, are parents aware of the life-threatening risks that come with its 'miracle' gene therapies?
New drugs are targeting babies already treated with gene therapy. Is the first 'miracle cure' for SMA not a permanent fix?
England’s 72% SMA Screening Rollout: Regional Inequality, Advocacy, and the Path to Universal Newborn Testing
Overview
England will begin a phased rollout of newborn screening for Spinal Muscular Atrophy (SMA) in October 2026, initially covering about 72% of newborns. This means many families, especially in major cities like Bristol and Leeds, will not have immediate access, creating a postcode lottery. The phased approach follows recommendations from the UK National Screening Committee, which called for an in-service evaluation to address evidence gaps before full national coverage. As a result, some regions will benefit sooner than others, highlighting concerns about fairness and the urgent need for universal access to early SMA diagnosis.