Landmark research indicates that early screening for a severe muscle-wasting disease during infancy not only saves lives but also reduces healthcare costs for the NHS.
The Mirror is advocating for the nationwide implementation of a straightforward £5 blood test for spinal muscular atrophy (SMA) for all newborns in the UK, based on findings from an Oxford University study published in the esteemed Lancet medical journal. The study highlights that 507 babies have been born with SMA since 2019, when NHS treatments became available, offering a cure if administered at birth.
In the absence of newborn screening in the UK, infants with the most severe form of SMA were diagnosed at an average age of six months. Out of 188 affected babies, none gained the ability to walk, with 65% needing respiratory assistance and 54% requiring direct feeding tubes. Tragically, 16 of these infants have passed away.
Comparatively, in southern Belgium where SMA screening at birth is standard, all babies diagnosed with SMA have survived without requiring walking aids, breathing support, or feeding tubes. The study, led by Professor Laurent Servais and published in the previous year, emphasizes the significant disparities in outcomes for affected children born in countries with and without newborn screening programs.
Researchers estimated that supporting an SMA baby in the UK costs around £74,000 annually, while similar babies identified through newborn screening incur costs of £25,000 per year.
The Mirror has been campaigning for integrating SMA screening into the NHS newborn heel prick test, aligning with practices in many other developed nations to prevent unnecessary suffering among children.
The story of Ezra Thorman, among the first infants successfully treated for SMA after a delayed diagnosis, exemplifies the importance of early intervention. With advancements in treatments like Zolgensma, which delivers a vital gene to nerve cells, the possibility of reversing disability in SMA patients exists if administered promptly.
Despite the UK National Screening Committee’s past reluctance to include SMA in the newborn screening program, recent efforts aim to conduct further research and pilot screenings in specific regions to assess outcomes. While a nationwide rollout is not expected until 2031, NHS Scotland has decided to commence newborn SMA screening in the coming months.
Acknowledging the importance of early diagnosis and access to treatments, the Department of Health and Social Care commits to supporting children with SMA through timely interventions and screening initiatives.