Why We Are Launching a Monthly Barometer – to Demonstrate the Human Cost of Delaying Newborn Screening

The UK SMA Newborn Screening Alliance is focused on ensuring that a positive decision is made about newborn screening for SMA in the shortest possible timeframe.

While we know and appreciate that people are working as hard as they can to streamline the process for SMA, for every five days that a decision is delayed, a baby born with SMA could be denied the chance of a healthier future. That is why we are launching a barometer to show how many babies have been born in the UK with SMA since nusinersen, the first treatment for SMA in the UK, was approved, first by the Scottish Medicines Consortium and then across the rest of the UK.

We hope that this barometer will serve as a reminder to us all as to why we must continue to work together as efficiently and effectively as we possibly can.