Newborn Screening Collaborative

Government inaction is allowing children to die from a treatable illness.

Since treatment for MLD became available on the NHS, 40 children have been diagnosed. Without newborn screening, 32 of them were sent home without access to life-saving treatment.

We’re grateful to see Simon take Katie and this issue seriously. Now we need James Murray to do the same.

In the first weeks of his new role, James Murray has the chance to help save one child every month from a preventable death.

The UK is lagging behind countries that have already begun screening for MLD based on credible, peer-reviewed, and published evidence. Yet when our government considered that same evidence, it relied on only 2 of the 23 pieces of evidence it classed as credible.

Scientists have done their job - we have the treatment and screening we need. Now it’s time for politicians to do the right thing.

I saw my constituent Katie and her son Joey recently, who I first met back in 2022. Joey has Metachromatic Leukodystrophy (MLD). He was diagnosed shortly after his second birthday, by which point he was already showing symptoms of this devastating condition.

MLD is a rare genetic disease that progressively damages the brain and nervous system and without early intervention, it is always fatal. While there is now a treatment available, it is only effective if given before symptoms begin.

The UK National Screening Committee has decided not to include MLD in the newborn screening programme, even though screening is already in place in countries such as Italy and Germany. I completely understand Katie’s (and many other families) deep concern and frustration at this decision.

I've raised this with several previous Ministers and I have now raised this issue with the new Secretary of State for Health. I also want to pay tribute to Katie, who is campaigning tirelessly so that other families do not have to go through what they have.