Freddie van Mierlo MP Urges Health Secretary to Tackle Delays in Newborn Screening for Spinal Muscular Atrophy

Freddie van Mierlo MP Urges Health Secretary to Tackle Delays in Newborn Screening for Spinal Muscular Atrophy

Freddie van Mierlo, MP for Henley and Thame, has written to the Secretary of State for Health and Social Care, Wes Streeting, to raise serious concerns about the ongoing delays in introducing newborn screening for Spinal Muscular Atrophy (SMA) in the UK.

Writing on behalf of the Access to Medicines and Medical Devices All-Party Parliamentary Group, which he chairs, Freddie is calling for urgent action and clear timelines from the Department of Health and Social Care and the UK National Screening Committee (UK NSC).

The UK NSC began reviewing the case for SMA newborn screening in 2022. In July 2024, it proposed an in-service evaluation (ISE) that could begin in mid to late 2025. However, critical steps in the process, including appointing a research team and allocating funding, are now not expected until April 2026. Following recent stakeholder discussions, it is feared that a final recommendation may not come until 2031.

SMA is a rare but life-threatening genetic condition. Without early diagnosis and treatment, most affected babies will experience irreversible muscle weakness, and many will die before the age of two or require permanent ventilation. Newborn screening can prevent these outcomes and is also expected to save the NHS over £60 million annually. The letter outlines three specific asks of the Health Secretary:

• Publish clear timelines for the implementation of the in-service evaluation and provide clarification on how the NIHR will address outstanding evidence gaps
• Ensure national coverage of the evaluation to reflect data across all UK regions
• Assess the impact of delayed access to screening for those outside the initial scope of the in-service evaluation

Freddie also highlighted that the UK’s newborn screening programme now ranks 23rd out of 30 European countries, down from 18th just three years ago.

"This delay is costing children their futures. Spinal Muscular Atrophy is a devastating condition, but we have the tools to act early and prevent lifelong disability or even death.

It is deeply concerning that the UK is falling behind other countries while families continue to suffer. We urgently need a clear timetable, proper coordination and a real commitment to delivering newborn screening for SMA without further delay. This is about giving every baby the best possible start in life. There is no excuse for waiting until 2031."