Member of Parliament for the Cities of London & Westminster, Nickie Aiken, today raised concerns about the lack of testing undertaken in children through the newborn screening programme.
Currently, the UK only tests for 9 rare diseases, whilst Iceland tests for 49 and Italy 47. The lack of testing puts our children at risk of severe disability.
Nickie would like the UK Government to overhaul the current newborn screening programme to align with other European and high-income countries and lead the world in diagnosing and treating rare diseases.
You can read Nickie’s question to the Health Secretary, and his response below.
Thank you, Mr. Speaker.
I'm sure my Right Honourable friend saw Fergus Walsh's report on BBC News last week on the ground-breaking treatment for spinal muscular atrophy, SMA, and the importance of the UK's newborn screening programme.
Surprisingly, the UK currently only screens for nine rare diseases in the heel-prick test, compared to other European countries like Iceland and Italy who test for 47 and 43 diseases respectively.
The sooner the diagnosis for a child of a rare disease, the better, which can change their lives and their life chances. "With this in mind, does he agree with me that the UK should really now be considering an expansion of the UK newborn screening programme?
And will he agree to meet me, or ask a Minister of State to meet with me and campaigners on the issue?
The Secretary of State Matt Hancock MP replied,
Yes, absolutely, I 100% agree with the Honourable Lady, and we do have the funding to expand this programme, and she'll have seen in the National Genomics Strategy that we set out that newborn screening is specifically highlighted.
It's a personal mission of mine to make this happen, and I'd be very happy to meet with her and with Baroness Blackwood, who's the Chair of Genomics England, who has been driving this project forward.
You can show your support for expanding screening by signing the ArchAngel MLD Trust Newborn Screening Review petition.