Key facts
- England will implement universal newborn screening for spinal muscular atrophy (SMA).
- SMA is a genetic disease causing progressive muscle weakness, impacting movement, breathing, and swallowing.
- Early intervention with gene therapies is crucial for SMA and must be administered before symptoms appear.
- Singer Jesy Nelson, whose daughters have SMA, welcomed the screening program.
- Nationwide screening is expected to begin in October 2027, with full implementation by that date.
England is set to introduce universal screening for spinal muscular atrophy (SMA) for all newborn babies starting in October 2027. SMA is a rare genetic disease that causes progressive muscle weakness, affecting a baby's ability to move, swallow, and breathe. In its most severe forms, it can be fatal before the age of two. However, pioneering gene therapies exist that can correct the genetic defect, but they are most effective when administered before symptoms manifest. The decision follows a campaign by former Little Mix singer Jesy Nelson, whose twin daughters were diagnosed with SMA. Previously, plans indicated that only 72% of newborns would be tested, drawing criticism for a potential 'postcode lottery.' The expanded program will utilize all 13 laboratories capable of testing for the condition. The heel-prick blood test, taken when babies are five days old, will screen for SMA alongside 10 other existing conditions.