Earlier today, Martin attended an event in Parliament, hosted by Novartis Pharmaceuticals UK, to learn about the urgent need to implement newborn screening for Spinal Muscular Atrophy (SMA) in the UK.
SMA is a rare, life-threatening genetic disorder affecting newborns in the first few months of their life. Left untreated, around 90% of babies born with the condition will either die before their second birthday or require permanent ventilation to keep them alive. By contrast, when treated pre-symptomatically, newborns have a significantly different outlook; a life without severe disability.
The goal of this event was to highlight how newborn screening for the SMA represents a significant opportunity for the Government to deliver on its ambitions of preventing ill health and reducing avoidable burdens on the NHS. However, the campaign calls attention to the fact that the UK is currently a significant global outlier in this area. All US states and almost two-thirds of European countries geographically having routine newborn SMA screening programmes, in recognition of the clear clinical and economic evidence supporting its adoption. The campaign states that, by acting now, the UK can not only improve outcomes for those with SMA but also position itself as a global leader in rare disease policy.
You can read more about the campaign and support for people with SMA online here: https://www.musculardystrophyuk.org/news/introduction-of-newborn-screening-for-spinal-muscular-atrophy/
