Parliamentary Committee Chair Backs Campaign for Universal Newborn SMA Testing
Layla Moran MP, chair of the influential Health and Social Care Committee, has issued a compelling plea to the government, urging immediate action to incorporate spinal muscular atrophy (SMA) screening into the NHS newborn heel prick test. In a formal letter to Health Secretary Wes Streeting, Ms Moran has endorsed the Daily Mirror's campaign, demanding answers on why a simple £5 check remains absent years after life-changing treatments became available on the NHS.
Critical Delay in Screening Implementation
Ms Moran highlighted that an in-service evaluation for SMA screening has yet to commence, despite recommendations from the National Screening Committee in 2023 and 2025. She emphasized that early diagnosis is crucial, as SMA is often detected too late, leading to irreversible nerve damage and life-limiting disabilities. Every month, four more babies are diagnosed under similar tragic circumstances, underscoring the urgency of the situation.
"Early diagnosis of SMA for babies is vital in ensuring that effective treatments can be provided and lead to better outcomes," Ms Moran stated in her letter. "Could you please indicate when an evaluation into the expansion of SMA testing will take place and why there has been such a severe delay?"
Celebrity Advocacy Amplifies Public Outcry
The campaign gained significant momentum after former Little Mix singer Jesy Nelson shared her heart-wrenching experience. Her twin girls were diagnosed with SMA at six months, too late to prevent permanent damage, after repeated NHS assurances that they were fine. Nelson described how her babies gradually stopped moving their legs in their early weeks, a common symptom of the disease.
In response, Nelson launched an online petition through the Mirror, which garnered an unprecedented 100,000 signatures in just one day, potentially triggering a House of Commons debate. Her advocacy has brought national attention to the issue, highlighting the human cost of delayed screening.
Disparities in UK Screening Policies
While the UK National Screening Committee initially declined to add SMA to the newborn programme in 2018, three major treatments have been available on the NHS since 2019, offering near-curative potential. However, a planned NHS pilot means full rollout might not occur until 2031. In contrast, NHS Scotland has decided to implement SMA screening from next month, making England an outlier in Europe.
Ms Moran pointed out that limiting testing risks leaving around 160,000 babies unscreened annually, with an average of 11 SMA cases diagnosed late each year. "England should follow the example of NHS Scotland and implement the trial sooner rather than later," she urged.
Expert Consensus and Government Response
Health experts insist that international evidence justifies immediate universal screening. In response, Health Secretary Wes Streeting has pledged to inquire about expanding the pilot to cover all newborns. This move aligns with growing public and parliamentary pressure to address the screening gap and prevent avoidable disabilities.
The ongoing delay not only affects families but also places England behind other European nations in safeguarding infant health. With treatments available and advocacy rising, the call for action has never been more urgent to ensure no more babies suffer from late SMA diagnoses.
