Duchenne Muscular Dystrophy: Givinostat

Baroness Burt of Solihull Excerpts

Tuesday 22nd July 2025 Lords Chamber

[Baroness Blake of Leeds (Lab)]

I am not sure that I can add a great deal more, other than to refer the noble Baroness to the 10-year plan, where innovation is absolutely at the core and the centre. We are where we are, and her point is about how we move from here to where we need to be. We need to make sure that there is a real focus on moving all that expertise into actual practice to bring benefit to as many patients as possible.

[Baroness Burt of Solihull (LD)]

My Lords, currently only 70 of the 500 children with Duchenne are accessing the trial of givinostat. We are hoping for a decision on 18 December from NICE, but my worry is about how long the rollout will take for sufferers and their parents. They want to know how long it will take for those who are not included in the fortunate 70 currently receiving givinostat, and for others in categories that may also be helped.

[Baroness Blake of Leeds (Lab)]

I recognise the noble Baroness’s concern and in-depth knowledge about this situation. I need to repeat at this point that it would be wrong of me to speculate on the outcome. I hope that the decision will be earlier than the date she mentioned. When the guidance is published, we will be in a much better position to assess next steps.