The Department of Health and Social Care announced on Thursday that every baby born in England will be screened for spinal muscular atrophy (SMA), a rare muscle-wasting disease, starting from 2027. This expansion builds on a pilot programme set to begin in October 2025, which initially covered only 72% of newborns.
What Is Spinal Muscular Atrophy?
SMA is a genetic condition that affects about one in 10,000 babies, with approximately 48 cases diagnosed annually in the UK. Infants with SMA experience floppy arms and legs, inability to sit up, crawl, or walk, and are prone to breathing and swallowing difficulties. Without early detection and treatment, the disease can be fatal within two years.
Current Screening and Planned Expansion
From October 2025, blood samples taken via the heel-prick test at five days old will be screened for SMA alongside 10 other conditions, including cystic fibrosis, sickle cell disease, and chronic hypothyroidism. However, this initial rollout only utilises seven of the 13 laboratories capable of testing, prompting criticism of a potential 'postcode lottery'. In response, ministers have committed to universal screening by October 2027, using all 13 laboratories to cover the approximately 560,000 to 570,000 babies born in England each year.
Impact of Early Detection and Treatment
Early diagnosis allows for effective gene-therapy treatment, which can prevent the most severe symptoms. Giles Lomax, chief executive of Spinal Muscular Atrophy UK, said: 'This is a hugely important step forward. When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment.' Andy Fletcher, chief executive of Muscular Dystrophy UK, added: 'The decision to introduce newborn screening for SMA across England is a landmark moment for the SMA community and the many partners who have spent years working to make it a reality.'
Campaigning and Political Profile
The issue gained prominence through campaigning by former Little Mix singer Jesy Nelson, whose twin daughters were diagnosed with SMA. In June, she criticised the limited initial rollout as 'outrageous'. Following the announcement of universal screening, Nelson said: 'After years of campaigning, it means so much to see the heel-prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test. Today is a day of hope. This is a victory for every family affected by SMA. While it can't change the future of our children, I know it marks the beginning of a brighter future for future SMA families.'
