Sign the Petition to Introduce Newborn Screening for SMA in the UK

25 June 2021

SMA UK is a member of the UK SMA Newborn Screening Alliance which brings together patient groups, clinicians and many other stakeholders determined to see newborn screening for SMA introduced as part of the heel prick blood test in the UK. You can get involved to support this call.

Laurent Servais, Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre, leads the Alliance. He's launched a petition calling for immediate funding for newborn screening for SMA in the UK:

“Every five days in the UK, a baby is born with SMA, which can lead to complex disability and, at its most severe, cut a young life short. But if, at birth, babies were given the treatments that are now available through the NHS, they could have longer and healthier lives.  

There are countries across the world that already have newborn screening (NBS) for SMA but the UK is not currently one of them. For every five days that a decision is delayed, a baby born with SMA could be denied the chance of a brighter future.”

New treatments for SMA that are funded by the NHS are most effective the earlier they are given, make a compelling case to introduce screening in the UK at the earliest possible time. But at present in the UK, a baby is only tested for SMA after they show symptoms, which are currently irreversible, or if a relative has / had SMA.

The UK Newborn Screening for SMA Alliance is committed to demonstrating that screening for SMA is safe, cost-effective, and extremely efficient. As we engage with decision-makers over the coming months, we’ll need to show there is strong public support. By signing Professor Servais’ petition, you’ll add your voice to the cause – every signature counts.

You can sign the petition here

In February 2019, the National Screening Committee (NSC) reviewed and turned down the case for newborn screening in the UK. On 30thJuly 2021 the UK SMA NBS Alliance will join representatives from the NSC for an all-day workshop to determine what evidence is needed to ensure that when they review the case this time, we have all the answers they are looking for.

At the same time, members of the UK SMA NBS Alliance are working with other groups calling for reform of the way NBS is considered in the UK. Here, only 9 conditions are screened at birth. In many countries in Europe and elsewhere there is screening for up to some 50 conditions. We are woefully behind. We will bring you more information on this campaign at a later date.