Business of the House Debate

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Department: Leader of the House

Business of the House

Connor Rand Excerpts
Thursday 30th January 2025

(3 weeks, 5 days ago)

Commons Chamber
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Nusrat Ghani Portrait Madam Deputy Speaker
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Questions are getting even longer. I said short questions, please. I call Connor Rand.

Connor Rand Portrait Mr Connor Rand (Altrincham and Sale West) (Lab)
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Duchenne muscular dystrophy is a severe progressive muscle-wasting disease that affects around 2,500 people in the UK, including Felix from my constituency. Felix’s mum, Lisa, has told me about Givinostat, a promising new treatment that could be transformative. However, not all NHS trusts are signed up to the early access programme for the drug, even though it is free. That needs to change, so could we have a debate or a statement on Duchenne muscular dystrophy and how we can improve access to treatments for it?

Lucy Powell Portrait Lucy Powell
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As my hon. Friend says, that treatment is free to patients and the NHS under the early access programme, but whether local trusts can cover the cost of administering it is a matter for them. I know that the National Institute for Health and Care Excellence aims to publish guidance on the use of Givinostat in the NHS shortly, and we will update the House as soon as possible.