Britain is falling dangerously behind in protecting its newborns from a devastating muscle-wasting disease, leaving an estimated 33 babies a year needlessly paralysed. This stark reality persists despite the availability of breakthrough gene therapies that can prevent disability if administered at birth.
The Race Against Time for SMA Babies
Spinal muscular atrophy (SMA) is a genetic condition where a fault in the SMN1 gene halts production of a vital protein. This protein maintains the nerve cells that carry signals from the brain and spinal cord to muscles. Without it, motor neurons die, causing muscles in the legs, chest, and arms to waste away, often leading to paralysis and death.
The critical window for intervention is narrow. Pioneering treatments like the one-off gene therapy Zolgensma, and others such as Spinraza and Evrysdi, are available on the NHS and can stop the disease in its tracks. However, they cannot reverse nerve damage once it has occurred, making early diagnosis through newborn screening absolutely essential.
Pop star Jesy Nelson has bravely highlighted this urgency, describing how her twin babies gradually lost the use of their legs in their first weeks before a belated diagnosis and treatment.
Britain's Outlier Status on Newborn Screening
The UK's current newborn heel prick test, performed at five days old, checks for just ten serious conditions. This pales in comparison to many European neighbours: Italy screens for 48, Austria for 31, and Poland and Portugal for 29. SMA screening is now routine in 45 countries, including the United States and nearly three-quarters of Europe. Notably, war-torn Ukraine has even managed to introduce it.
In the UK, the National Screening Committee (NSC) first decided against adding SMA to the programme in 2018. Despite three major treatments becoming available on the NHS since 2019 and overwhelming international evidence, the committee in 2023 called for further studies. It insisted on an "in-service evaluation"—a large NHS pilot—rather than recommending national screening.
A Pilot Scheme Deemed 'Unethical' by Experts
This decision has created a postcode lottery and significant ethical concerns. The planned pilot, which has not yet started and is not expected to begin until 2027 at the earliest, would require a control group of babies who are not screened. Medics have criticised this approach as unethical, as it deliberately withholds a potentially life-changing test.
Once running, the Mirror understands the pilot would mean over 160,000 babies annually would not be screened, leading to an estimated 11 SMA babies being diagnosed late each year. The full rollout of national screening is now unlikely before 2031.
In a significant move, NHS Scotland has broken ranks, deciding to add SMA to its routine heel prick test from spring 2026. This leaves England, Wales, and Northern Ireland trailing in its wake, advised by the same UK-wide committee.
The campaign for change is growing, demanding that the UK health authorities act with the urgency this preventable childhood tragedy demands.
