The national rollout of screening for the rare genetic condition spinal muscular atrophy (SMA) in newborns is to begin earlier than planned, the government has confirmed. Health Secretary Wes Streeting has announced that the crucial In-Screening Evaluation (ISE) will now commence in October 2026, bringing the start date forward by three months from the initial January 2027 target.
Campaigner’s pride at “major milestone”
The accelerated timeline follows sustained campaigning led by former Little Mix singer Jesy Nelson, who became a vocal advocate after her twin daughters, Ocean Jade and Story Monroe Nelson, were diagnosed with SMA Type 1 in January 2026. Nelson, who recently became a patron of the charity SMA UK, described the announcement as a “big step forward” and said she was “proud” of reaching what she called a “major milestone for the SMA Community.”
Nelson had launched a petition, which gathered over 147,000 signatures, calling for SMA to be added to the NHS newborn blood spot, or heel-prick, test. She also met with Health Secretary Wes Streeting earlier this year to discuss the life-changing impact of early detection. In a letter to Nelson and SMA UK chief executive Giles Lomax, Mr Streeting confirmed the earlier start date for the ISE, a process used by the UK National Screening Committee to test new screening programmes in the NHS before national adoption.
Understanding the urgent need for screening
Spinal muscular atrophy is a rare but devastating neuromuscular disorder, estimated to affect 1 in 14,000 births, with around 47 babies born with it in the UK in 2024. It causes progressive muscle wastage and weakness by affecting the motor neurons that control voluntary movement, which can severely impact breathing, swallowing, and mobility. The most common form, SMA Type 1, is the most severe and has historically, without treatment, significantly limited life expectancy.
The critical factor is time. Available NHS-funded treatments, which include gene therapies, are most effective when administered before symptoms appear or very early in life. The mantra “time is neurons” underscores the urgency, as lost motor neurons cannot be regenerated. While treatments can dramatically alter the disease’s course, they cannot restore muscle already lost. Nelson has said her twins, who have received a one-off gene therapy infusion, are unlikely to ever walk.
For years, the UK National Screening Committee did not recommend screening, citing a lack of evidence on programme effectiveness and the long-term outcomes of new treatments. This stance made the UK a global outlier, with countries like the US and much of Europe already screening routinely. Patient groups had long campaigned for change before Nelson’s involvement, with some families feeling their calls were previously ignored.
Rollout details and remaining challenges
The upcoming In-Screening Evaluation in England will involve an estimated 404,000 babies in a phased rollout. However, a significant control group of around 163,000 newborns will not be tested, a design some experts have criticised as “unethical,” as it may result in an estimated 11 babies per year receiving a delayed diagnosis. Mr Streeting acknowledged officials are “working through the challenges related to extending the ISE to the whole of England,” with the aim of a full national rollout.
The announcement also highlights a postcode lottery across the UK. Scotland has already pioneered a newborn SMA screening pilot. While Scottish officials are working with the UK NSC to share findings, no equivalent decision has been reached for Wales and Northern Ireland, meaning newborns there will remain unscreened for now.
Giles Lomax of SMA UK welcomed the news, stating it “will change the lives of so many diagnosed through the heel prick test.” He pledged to continue working to ensure the rollout reaches all parts of the UK, asserting that “no baby should be left behind based on where they live.” The cost of adding SMA to the existing heel-prick test is estimated at just £4-£5 per baby.