Ian Byrne

Ian Byrne

Labour — Liverpool West Derby

Speaking in the House of Commons on 28 January 2026

Debate

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Contribution

I hope you get well soon, Mr Speaker. Lillia Jakeman is 19 years of age and has been given a devastating diagnosis of motor neurone disease. When she was told that she has a very rare form of the disease that can be treated with a groundbreaking new drug called tofersen, her family were given hope. They have since discovered that although the drug is being made available to the NHS free of charge, her local trust has declined to deliver it. This afternoon, her family will be arriving at Downing Street, having walked from Southampton, to highlight this injustice. Will the Deputy Prime Minister work with me, MPs from across the House, Ministers in the Department of Health and Social Care and NHS bosses to deliver fair access to tofersen for all living with this rare form of motor neurone disease?

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