In a powerful appeal to Health Secretary Wes Streeting, charity leaders have warned that the “clock is ticking” on a critical decision that could save the lives of babies with a devastating muscle-wasting condition. Giles Lomax, chief executive of SMA UK, and former Little Mix singer Jesy Nelson, whose twins were diagnosed late with spinal muscular atrophy (SMA), have urged Streeting to act swiftly and expand the NHS’s newborn screening pilot to cover all babies across the UK.
SMA is a genetic disorder caused by a fault in the SMN1 gene, which produces a protein essential for the health of motor neurons. Without this protein, these nerve cells die, leading to the deterioration of muscles and, in severe cases, the need for assisted breathing and feeding. While three effective treatments are now available on the NHS, they are only truly effective if administered at birth, before irreversible muscle damage occurs.
Currently, the NHS pilot program only screens around two-thirds of newborns in England, leaving an estimated 33 babies diagnosed too late each year. This has devastating consequences, with many requiring wheelchairs and intensive medical support. Experts have criticised the decision to exclude a “control group” of 163,000 babies, branding it “unethical”.
Lomax has warned Streeting that “every month of delay means more babies are diagnosed too late.” He emphasised that this is no longer a clinical question, but a political decision that now rests with the Health Secretary. Jesy Nelson’s story has inspired four more families to come forward with the same devastating news, underscoring the urgency of this issue.
In response, Streeting has acknowledged the powerful case made by the campaigners and stated that plans are underway for a large-scale trial to screen hundreds of thousands of babies for SMA across the NHS. He has also promised to explore the possibility of expanding the evaluation to involve all newborns, rather than just two-thirds as currently planned.
The UK National Screening Committee had previously decided against the immediate rollout of SMA screening, despite the availability of effective treatments. However, with the evidence now clear and most developed nations already screening for the condition at birth, the SMA community is urging Streeting to act swiftly and ensure that no more babies are left behind due to their postcode.
