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Baroness Kramer (LD)

Speaking in the House of Lords on 22 July 2025

Debate

Duchenne Muscular Dystrophy: Givinostat

Contribution

My Lords, boys M and H are friends aged 14 and 11, and both have Duchenne muscular dystrophy. Boy M is receiving givinostat, provided by his NHS trust, and expects to preserve his ability to walk and to be eligible for new drugs in the pipeline. Boy H’s NHS trust is not providing him with givinostat. His family fear he will lose his ability to walk before September, and he is unlikely to be eligible for future drugs. Givinostat is cost-free from the manufacturer under the early access programme, but delivery and monitoring costs fall on the NHS. What can the Minister say to boy H and the 400 other boys like him who are losing in the postcode lottery? Will she meet with some of the families?

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