Three children die every year while the NHS waits to roll out a blood test for spinal muscular atrophy (SMA), according to modelling seen by the Mirror. The newspaper is campaigning for the £5 check to be added to the NHS newborn heel prick test, which already screens for nine other conditions.
The test would allow babies to be given drugs that are effectively a cure if administered soon after birth, before muscle neurons die. Most European nations and the US already screen for SMA. Delayed diagnosis can mean babies never walk, need breathing machines, or require feeding via a stomach tube.
Modelling by the Sheffield Centre for Health and Related Research (SCHARR) shows that every year screening is delayed results in three infant deaths, two more babies needing breathing machines, and 30 growing up unable to walk. The cost of screening all newborns – £6.7 million – would be offset by long-term healthcare savings.
Giles Lomax of charity SMA UK said the model found screening could produce better outcomes at lower cost. He noted that hidden costs such as wheelchairs, home adaptations, and lost parental income were not included. Many severe SMA type 1 babies require round-the-clock nursing and repeat hospital admissions for common infections.
Health Secretary Wes Streeting told the Mirror he has asked whether a planned NHS pilot could be expanded to screen all babies. The pilot, due to start next year, currently plans to leave a third of infants unscreened as a control group, a decision experts have branded unethical.
Streeting met former Little Mix singer Jesy Nelson, whose twin babies have SMA type 1 and will never walk. She is leading calls for newborn screening. The Mirror’s campaign continues as the UK National Screening Committee has delayed recommending the test since 2019.
