All newborns in England to be screened for spinal muscular atrophy from 2027

The heel-prick test, which in England screens for 10 other conditions including cystic fibrosis and sickle cell disease, will be used to detect SMA. Photograph: David Gee 4/Alamy View image in fullscreen The heel-prick test, which in England screens for 10 other conditions including cystic fibrosis and sickle cell disease, will be used to detect SMA. Photograph: David Gee 4/Alamy All newborns in England to be screened for spinal muscular atrophy from 2027 Campaigners hail ‘landmark moment’ in early detection and treatment of rare muscle-wasting disease Every baby born in England will be screened for a rare muscle-wasting disease, starting next year, the Department of Health and Social Care announced on Thursday. Campaigners said the “landmark moment” should lead to babies who were found to have spinal muscular atrophy (SMA) being treated early and thus growing up without any of its debilitating symptoms. SMA leaves babies with floppy arms and legs, unable to sit up, crawl or walk, and prone to problems breathing and swallowing. If it goes undiagnosed, it can kill those who have the condition within two years. It affects about one in 10,000 babies; usually, about 48 a year in the UK. Those detected at birth can be given a gene-therapy treatment that gives them a normal life. Almost three-quarters (72%) of newborns in England are already due to be tested for the condition from October under a pilot programme announced in April. However, that prompted criticism that a less-than-universal testing regime would result in a “postcode lottery” of some cases going undetected. Ministers have responded to those concerns by announcing that all babies born in England – between about 560,000 and 570,000 a year – will be screened from October 2027. Universal coverage will be achieved by using all 13 laboratories that can test for it, up from the current seven. “This is a hugely important step forward,” said Giles Lomax, the chief executive of Spinal Muscular Atrophy UK. “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.” From October, blood tests taken from newborns when they are five days old, through the heel-prick test, will be screened for SMA as well as the 10 conditions – including cystic fibrosis, sickle cell disease and chronic hypothyroidism – they are already used to detect. skip past newsletter promotion after newsletter promotion NHS drugs go-ahead offers lifeline to children with rare muscle-wasting disease Read more Andy Fletcher, the chief executive of Muscular Dystrophy UK, said: “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.” SMA has gained a higher profile politically and in the media as a result of the former Little Mix singer Jesy Nelson campaigning for universal screening . Her twin daughters, Oce