AQW 22859/22-27

Miss Nuala McAllister
Alliance Party
North Belfast

Tabled Date: 18/02/2025
Answered On Date: 05/03/2025
Priority Written: No

Question:
To ask the Minister of Health to detail why Givinostat, a drug to treat Duchenne Muscular Dystrophy, is not being made available.

Answer:

The National Institute for Health and Care Excellence (NICE) is currently evaluating givinostat (Duvyzat®) for the treatment of Duchenne muscular dystrophy in people of 6 years and over, with final guidance expected to publish in July 2025.

When the final guidance for this treatment is issued by NICE, my Department will consider it under the usual process for NICE Technology Appraisals as per the guidance set out in circular HSC (SQSD) 12/22 which is available at: https://www.health-ni.gov.uk/sites/default/files/publications/health/doh-hsc-sqsd-12-22.pdf

Whilst the manufacturer has made givinostat available via an Early Access Programme (EAP) for eligible patients in parts of the UK, the Belfast HSC Trust, which delivers Paediatric Neuromuscular services for the region, has advised that it is unfortunately not in a position to facilitate the EAP due to the associated resource implications.