Duchenne Muscular Dystrophy: Givinostat

Lord Evans of Rainow Excerpts

Tuesday 22nd July 2025 Lords Chamber

[Baroness Blake of Leeds (Lab)]

I cannot give the detailed answer on the numbers that the noble Lord is after, but I am very happy to write to him. We have this experience in a whole range of other medicines, but I appreciate the noble Lord’s particular interest in this. This is a very difficult area. It is for NICE to look at the best way forward on providing medicines that give the best results and value for money and achieve the right outcomes. This is an ongoing situation, and I am happy to write to the noble Lord on the detail.

[Lord Evans of Rainow (Con)]

My Lords, I witnessed a close family member suffer with this dreadful disease, and the Minister is right to say that she cannot comment on the actual drug and NICE’s decision. However, before this drug is administered, you require blood-clotting platelets so that the drug can have the best effect. However, there is a big shortage of platelet donors within the NHS, as the noble Baroness may be aware. Waiting for NICE’s decision may be part of the administration cost of administering this drug, but one thing it may use to say it cannot do it is a shortage of donors, so perhaps we can proactively ask the NHS to look into how we can get more donors for platelets.

[Baroness Blake of Leeds (Lab)]

The noble Lord touches on a very sensitive matter that could be replicated around a variety of issues. Looking for more people to come forward is a perpetual challenge, and I am sure that everything should be done to encourage people to do so. I am sure that many people do not know that this is an issue, and some promotion could be helpful.