The Access to Medicines and Medical Devices APPG has written to the Health Minister to raise concerns about ongoing delays in the UK National Screening Committee’s review of newborn screening for Spinal Muscular Atrophy (SMA). Originally initiated in 2022, the review remains unresolved, with a final decision on the research team and funding for the proposed in-service evaluation (ISE) not expected until April 2026. Following stakeholder discussions, it is estimated that it could take up to four years from screening the first baby as part of the ISE to the UK NSC issuing a formal recommendation for routine SMA screening in the NHS.

Working to highlight the urgent need for timely access to life-saving treatment, the APPG emphasizes that SMA is a life-threatening genetic disorder where early diagnosis is critical. Without treatment, around 90% of affected babies may die before their second birthday or require permanent ventilation, and most will never walk independently. Newborn screening offers the opportunity to prevent irreversible damage, improve health outcomes, and reduce long-term care costs, with current estimates suggesting annual savings of £62.2 million. The APPG urges the Department to accelerate the review process and ensure that all babies in the UK have timely access to this vital screening.

Find the full letter from the APPG and the Department's response below.