England to Add SMA Test to Newborn Heel Prick Screening From End of Year

The Department of Health announced on Thursday that a national newborn screening program for spinal muscular atrophy will begin across England at the end of the year as part of an evaluation. Hundreds of thousands of babies will receive the test through the existing heel prick blood spot procedure shortly after birth.

The Independent reported that the rollout follows years of advocacy by Jesy Nelson, 35, whose twins Ocean Jade and Story Monroe were diagnosed with SMA.

Nelson interviews former health secretary Wes Streeting in the Prime Video documentary Jesy Nelson: Life Changing, released Friday, which traces her campaign to add the condition to routine newborn screening. During the interview for ITV’s This Morning, Nelson asked Streeting why the change required her platform.

Streeting replied that his inbox had been full of similar questions and that many people had thanked Nelson for her work.

Nelson told him it was madness that three life-changing treatments existed yet SMA remained outside the heel prick test. Nelson later said she felt gutted for not raising every point and asked for two more minutes with Streeting. She described her frustration that her daughters’ diagnosis could have come months earlier and said the possibility of explaining the missed screening to them one day infuriates her.

Streeting said he felt pressure to implement the testing so every child benefits. The NHS states that SMA causes muscle weakness, movement problems, breathing and swallowing difficulties, tremors, and bone and joint issues. Nelson has campaigned for inclusion in the newborn blood spot test since her twins’ diagnosis, noting that early treatment can limit severe effects.