NHS press release highlights impact of treatment options on SMA prognosis, but newborn screening is essential to deliver true transformation for babies with SMA

On 7 August, NHS England issued a news release highlighting that 3 in 4 babies born with SMA are now surviving for 2 years or more, thanks to the increased availability of treatments through the NHS since 2019.

This data is drawn from the latest SMA REACH UK study. In its release, NHS England also draws attention to other aspects of that report, including that there has been a significant reduction in deaths from SMA type 1, with 11 deaths from SMA type 1 recorded between 2018 and 2023, compared to 25 deaths each year being recorded between 2008 and 2017.

The UK SMA Newborn Screening Alliance agrees that the increased availability of ground-breaking treatments through the NHS has greatly improved the prognosis for patients diagnosed with SMA. However, many babies are still being diagnosed due to the onset of irreversible symptoms due to the lack of newborn screening

As Amanda Pritchard points out, “there is so much still to do”. This of course starts with the need for a rapid decision on the commencement of newborn screening for SMA, arising from the current UK NSC review.

As acknowledged by SMA UK CEO Giles Lomax in this release, newborn screening is essential to securing timely access to these treatments and ensuring that infants are treated before irreversible damage occurs. Newborn screening will deliver the best patient outcomes and the best value for money for the NHS overall.

The full NHS England statement can be found through this link.