Government Reviews Newborn SMA Screening Programme
The Government has confirmed it is actively considering the implementation of universal screening for spinal muscular atrophy (SMA) across all newborn babies in England. This potential policy shift represents a significant development in public health strategy and follows sustained campaigning by The Mirror newspaper and affected families.
Health Secretary Announces Evaluation Review
Health Secretary Wes Streeting has revealed that he has formally requested his departmental team to examine whether the planned NHS pilot programme for SMA screening could be expanded in both scope and timing. The current proposal involves screening approximately two-thirds of newborns while excluding around 163,000 infants annually to serve as a control group for comparative analysis.
"I have asked my team to look at whether this evaluation can start sooner, and whether it can be expanded to involve all babies, rather than two thirds as currently planned," Mr Streeting stated. He emphasised his commitment to reporting back to the SMA community regarding these considerations.
Campaign Momentum and Celebrity Advocacy
The potential policy reconsideration follows a meeting between Mr Streeting and former Little Mix singer Jesy Nelson, whose twin babies have been diagnosed with the most severe Type 1 form of SMA. Mr Streeting acknowledged that "Jesy and other campaigners have made a powerful case for doing more on screening."
The Mirror has been campaigning since 2021 for universal SMA screening, highlighting how early detection combined with available treatments can prevent disability and save lives. The newspaper's coverage has included interviews with families directly affected by the condition and reports on groundbreaking treatments now available through the NHS.
Current Screening Controversy and International Context
The existing NHS pilot plan has faced criticism from medical experts and charities who describe the exclusion of one-third of babies from screening as "unethical". SMA UK and other advocates argue that sufficient international evidence already exists demonstrating that newborn screening saves both lives and healthcare resources.
Most developed nations, including the United States and much of Europe, already incorporate SMA testing into their routine newborn screening programmes. Meanwhile, NHS Scotland has decided to proceed with adding SMA to their routine heel prick test beginning this spring, creating a disparity in screening provision across the United Kingdom.
Medical Background and Available Treatments
Spinal muscular atrophy is a genetic condition caused by a fault in the SMN1 gene, which produces a protein essential for maintaining nerve cells that transmit signals between the brain and muscles. Without this protein, motor neurons die off, leading to progressive muscle wasting, particularly affecting the legs, chest, and arms.
Since 2019, three major treatments have become available on the NHS that can effectively prevent the condition's progression if administered from birth:
- Gene therapies that correct the faulty SMN1 gene
- Treatments that provide replacement proteins to maintain muscle function
- The groundbreaking Zolgensma injection that delivers healthy gene copies to the brain
Despite these medical advances, the UK National Screening Committee has maintained its 2018 decision against immediate nationwide rollout of the £5 blood test that could detect SMA at birth.
Timeline Concerns and Human Impact
Under current proposals, full national screening implementation is not anticipated until 2031. This extended timeline has raised serious concerns, particularly as at least 16 children born with SMA since 2019 have died in the UK. The delay means that babies born in Wales and Northern Ireland will not receive screening under existing plans.
Mr Streeting offered some reassurance to affected families, stating: "I hope families can feel reassured that progress is being made on this, with more treatments available for spinal muscular atrophy than ever before – we want to see more children with SMA not just surviving but thriving."
The Government's reconsideration of universal newborn SMA screening represents a potentially transformative development in child healthcare policy, balancing evidence-based medicine with ethical considerations about equitable access to life-changing interventions.
