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 October 2027. Campaigners hailed the decision as a "landmark moment" that will allow early detection and treatment, potentially enabling affected babies to grow up without debilitating symptoms.
What is spinal muscular atrophy?
SMA causes babies to have floppy arms and legs, inability to sit up, crawl, or walk, and difficulties with breathing and swallowing. If undiagnosed, it can be fatal within two years. The condition affects about one in 10,000 babies, with around 48 cases per year in the UK.
Newborn screening expansion
From October 2025, a pilot programme will screen 72% of newborns in England for SMA, using seven laboratories. However, this partial rollout drew criticism for creating a "postcode lottery." In response, the government announced universal coverage by October 2027, utilising all 13 testing laboratories. The heel-prick test, already used to screen for 10 conditions including cystic fibrosis and sickle cell disease, will be expanded to include SMA.
Reactions from campaigners
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."
Jesy Nelson's campaign
Former Little Mix singer Jesy Nelson, whose twin daughters were diagnosed with SMA, campaigned for universal screening. In June, she criticised the limited rollout as "outrageous." Following the announcement, she said: "After years of campaigning, it means so much to see the heel-prick test for SMA begin rolling out from October... Today is a day of hope. This is a victory for every family affected by SMA."
