Following recommendations from the National Screening Advisory Committee, Minister for Health for the Republic Ireland, Stephen Donnelly has asked for SMA to be added to the National Newborn Bloodspot Screening Programme.
Published on the 26th November, Minister Donnelly emphasised the impact that rare conditions can have on children and their families and how screening is a step that can significantly improve outcomes for children.
He says, “this is why I have been consistent in my support for expanding the National Newborn Bloodspot Screening Programme since assuming office.”
Over 65% of European countries now have SMA included on their NBS programme and with Republic of Ireland approving last week, they join Luxembourg which is planned for 2024. They recognised the positive impact screening can make on the lives of so many.
At SMA UK we are delighted to hear this news knowing that the introduction of newborn screening can significantly improve the outcomes for children and their families. However, with our closest European neighbour now having approved NBS for SMA it further highlights that we as a nation are falling behind and failing many children that will live with complex needs.
“That is why advocating for Newborn screening in the UK is our number one priority” says Giles Lomax, CEO at SMA UK
SMA UK presented the need for NBS at the parliamentary round table event on the 8th November which was hosted by LIz Twist MP. Following on from this event we will be working at a political level across all four home nations to maintain contact and pressure on decisions makers, ensuring there is a clear timeline introduced for NBS with a particular reference to the in-service evaluation.
You can read the full press release here from the Irish Government