Duchenne Muscular Dystrophy

Debate between Freddie van Mierlo and Chris McDonald

Thursday 12th June 2025 Commons Chamber

[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.

[Freddie van Mierlo (Henley and Thame) (LD)]

I thank the hon. Gentleman for securing this debate. I have been engaging with the Oxford NHS trust, which is not yet providing givinostat to boys in Oxfordshire. Its own business case suggests that it would cost less than £2,000 per boy and £66,000 in total for the 35 boys. Clearly, as a country, we should be able to afford such a sum. Does he agree that a hospital that wants to be world-leading should be providing it? Does he further agree that this is exactly the sort of thing we need Government intervention on, so that these boys can get treatment as soon as possible?

[Chris McDonald]

I do agree. I recognise the figures from the Oxford university hospitals NHS foundation trust. It is quoting around £2,000 per lad treated, which I understand is very similar to other areas of the country. I see that as quite a small amount of money for the 35 lives that could be saved.

Despite, as we have heard, givinostat being available for more than seven months, there has been a very inconsistent approach across the UK. A very small number of ambulant people living with DMD have so far received the treatment, and no non-ambulant boys have been treated with it yet.