Duchenne Muscular Dystrophy

Jim Shannon Excerpts

Thursday 12th June 2025 Commons Chamber

[Chris McDonald]

Yes, I do agree with that very timely intervention. In fact, the slogan of Duchenne UK is “Time is muscle”, and it is absolutely right that every day and every week makes a difference to these boys.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing forward this debate. He and I spoke about it the other day. I have some constituents who have had a brave few years with Duchenne muscular dystrophy. The problem is that the opportunity of this drug has never been there for them, but it needs to be. Up until now in Northern Ireland, Duchenne treatment has included corticosteroids, physical therapy and other supportive therapies, while access to newer treatments, such as vamorolone or givinostat, are being worked on—we in Northern Ireland have not had access to them either. It seems to be almost a postcode lottery. Does he agree that these drugs could give those young boys a life-changing opportunity that they would never have otherwise, and that, with great respect to the Minister, the Government need to move and ensure that they all get these drugs?

[Chris McDonald]

I thank the hon. Member for that intervention. I am very pleased that he has intervened and I think the comment about a postcode lottery is exactly right. I noted, when I looked at the figures, that currently the Belfast health and social care trust is not offering the drug to lads in Northern Ireland, because it is claiming that it will cost £309,000 for 13 patients. That is different from the rest of the country by an order of magnitude, so I would be grateful if the Minister looked very carefully at the situation in Northern Ireland.