For those who have spent years trying to raise awareness, Wes Streeting’s intervention is ‘bittersweet’
When former Little Mix star Jesy Nelson announced her twins had been diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that causes muscle wastage, the news quickly made front page news.
The call for SMA to be added to newborn screening sprang to national attention and the health secretary, Wes Streeting, was quick to respond, saying Nelson was “right to challenge and criticise how long it takes to get a diagnosis”.
“I’m determined to look not just at screening for SMA, but to make much better use of genomic medicine,” he said.
But for many families affected by SMA, his intervention was bittersweet, with some saying their calls for the same kind of government action had been ignored for years.
