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Every Moment Matters: the urgent need for newborn screening for Spinal Muscular Atrophy (SMA) in the UK

Spinal Muscular Atrophy (SMA) is a rare, genetic condition that affects around 70 babies each year, with approximately one baby being born with SMA every five days in the UK. SMA is characterised by the loss of motor neurons in the spinal cord and, if left untreated, babies affected will experience progressive muscle weakness and problems with mobility. Devastatingly, around 90 per cent of babies with SMA Type 1 – the most common type – will require permanent ventilation or die before their second birthday, making SMA the leading genetic cause of infant death in the UK. Michael Oliver The progressive nature of the disease means that, without timely intervention, 95 per cent of motor neurons will have already been lost by the time of diagnosis – around the age of 6.

Reimagining medicine through population health and population health management

Over the past 20 months, the Covid-19 pandemic has shone a light on underlying healthcare issues and inequalities in the UK. To add to this, our health and care needs are changing. Lifestyle choices are increasing our risk of preventable disease and affecting wellbeing, as we continue to live longer with multiple long-term conditions such as asthma and diabetes against a backdrop of an increasing health inequality gap.i As we look to ‘build back better’ and deliver sustainable healthcare in a post-Covid world, this is a critical time to explore how we can move away from simply treating disease to identifying how we can prevent it in the first place. How can we achieve this? Innovative medicines, while critical to the future of healthcare, are not enough by themselves.