Topical question AQT 1041/22-27
Topical question by Mr Colin McGrath on .
- MLA
- Mr Colin McGrath
- Party at the time
- Social Democratic and Labour Party
- Date
- 18 February 2025
- Type
- Topical question
- Assembly reference
- AQT 1041/22-27
- Business
- Oral Answers to Questions
- Assembly identifier
- Official Report component 4806414
Read the official Assembly record
Text
Mr McGrath asked the Minister of Health, given that we learned in the media today that Alfie Pentony, a 12-year-old from Newry who suffers from Duchenne, a rare form of muscular dystrophy, is being deprived of a new drug that could delay the onset of muscle wastage, resulting in his being wheelchair-bound for the rest of his life and that, once such muscle wastage commences, he would be unable to avail himself of the drug, making timing critical, and given that the new drug has been approved by NICE and is available via an early access programme in other parts of the UK but not in Northern Ireland, whether it is fair that Alfie and others who have contacted our constituency offices are being deprived of access to such drugs.
130 words. Text as published by the Northern Ireland Assembly.
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