We are deeply disappointed by the UK National Screening Committee’s decision not to add Metachromatic Leukodystrophy (MLD) to the newborn screening panel.
The committee concluded that key criteria for screening are currently not met, citing:
Insufficient evidence on test accuracy and cut-off values for newborn screening algorithms
No direct evidence that early treatment following screening improves outcomes compared to treatment after symptoms appear
Uncertainty around cost-effectiveness of implementing screening at a national level
While we digest the full report and prepare a detailed response, we want to reassure our community:
We will not stop fighting for newborn screening for MLD.
Our next steps include:
Requesting a meeting with the UK NSC to challenge this decision
Seeking more information on the potential 'In Service Evaluation'
Engaging with Parliament to raise awareness and advocate for change
Continuing to amplify the urgent need for newborn screening for MLD
Thank you to each and every one of the 501 people who took time to object to the NSC’s recommendation in August.
Your voices and stories matter. Together, we will keep pushing until every child has the chance for early diagnosis and treatment.
