Hundreds of thousands of newborn babies in England will be tested for spinal muscular atrophy (SMA) from October this year, after Health Secretary Wes Streeting intervened to bring forward the start date from January 2027. The move follows a campaign by the Daily Mirror and former Little Mix singer Jesy Nelson, whose twin daughters were diagnosed with SMA too late to prevent irreversible nerve damage.
The NHS pilot, which will screen an estimated 404,000 babies, was delayed for years but will now begin in October 2024. However, 163,000 newborns will remain untested to serve as a control group, a situation experts have branded 'unethical'. It means an estimated 11 babies a year will still be diagnosed too late.
In a letter to Jesy Nelson and Giles Lomax, chief executive of SMA UK, Mr Streeting said: 'I am pleased to confirm that the ISE will now start in October this year rather than January 2027 as previously planned.' He added that he would like to see a full rollout across England.
Scotland has already decided to screen all babies for SMA, but no such decision has been made in Wales and Northern Ireland, where all 47,000 newborns will remain untested annually. The UK currently checks for only 10 out of 50 potential serious health conditions in newborns, compared to 48 in Italy and 31 in Austria.
SMA is caused by a fault in the SMN1 gene, leading to muscle wasting. Three treatments are approved on the NHS, but they are most effective if given at birth before nerve damage occurs. The UK National Screening Committee had previously decided not to add SMA to the newborn screening programme.
