Health Secretary Wes Streeting has been directly urged to accelerate a decision on nationwide screening for spinal muscular atrophy (SMA), a severe muscle-wasting condition, with campaigners warning that political delays are putting babies at risk of lifelong disability.
Charity Issues Direct Appeal to Health Secretary
Giles Lomax, chief executive of the charity SMA UK, has made a personal appeal to Mr Streeting, emphasising that every month of inaction results in more infants being diagnosed too late for effective treatment. Mr Lomax, whose own twins have SMA, met with the Health Secretary alongside former Little Mix singer Jesy Nelson, who also has twins affected by the condition.
The meeting highlighted the critical time sensitivity in diagnosing SMA, as available NHS treatments can effectively cure the disorder but only if administered immediately after birth before irreversible muscle damage occurs.
The Devastating Impact of Spinal Muscular Atrophy
Spinal muscular atrophy is caused by a fault in the SMN1 gene, which produces a protein essential for maintaining nerve cells that transmit signals between the brain, spinal cord, and muscles. Without this protein, motor neurons die off, causing muscles to waste away.
Currently, three treatments available on the NHS can correct the faulty gene or provide replacement protein, offering what amounts to a cure when given early. However, an estimated 33 babies each year in the UK are diagnosed too late, often leaving them dependent on wheelchairs, breathing machines, or feeding tubes.
Current Screening Plans Deemed Unfair and Unethical
The UK National Screening Committee (UKNSC) has planned an NHS pilot that would screen approximately two-thirds of newborns in England—around 404,000 infants annually—while excluding 163,000 babies as a control group. This approach has been criticised by experts as unethical and geographically unfair, as whether a baby is screened depends on their location.
Mr Lomax stated: "Under the current NHS screening pilot, where a baby is born determines whether they are screened for SMA or not. Babies in London are, while babies in places like Bristol are excluded. That simply isn't fair."
Political Decision Now Rests with Streeting
Campaigners argue that the question of SMA screening is no longer clinical but political, with the responsibility squarely on Mr Streeting's shoulders. The UKNSC initially declined to add SMA to the newborn screening programme in 2018, despite three major treatments becoming available on the NHS since 2019.
While NHS Scotland has decided to implement routine SMA screening from spring, babies in Wales and Northern Ireland remain excluded under current plans. SMA UK contends that an NHS pilot excluding some babies is unnecessary, pointing to international evidence from the US and most of Europe where newborn SMA screening is already standard practice.
Health Secretary's Response and Next Steps
In response to the campaign, Mr Streeting told the Mirror he has asked his team to explore whether the planned evaluation could start sooner and be expanded to include all babies, rather than just two-thirds as currently proposed. He acknowledged the powerful case made by campaigners and noted that planning for a large-scale trial is underway.
However, with the current schedule suggesting a full screening rollout might not occur until 2031, families and campaigners are pushing for immediate action. Mr Lomax emphasised: "The SMA community has presented the evidence, the data and the real-life impact on families. This decision cannot wait."
The situation underscores the tension between evidence gathering and urgent medical need, with campaigners arguing that lives and quality of life are at stake with every passing month.
