Overview

• ITF Pharma UK has offered givinostat free under an early access programme since November 2024 but by mid-June 2025 only a handful of NHS trusts in England are supplying the drug.
• Several trusts are refusing or delaying treatment and drawing up prioritisation lists, citing annual monitoring costs of about £1,900 per patient.
• Evelina London Children’s Hospital has begun contacting eligible families and is prioritising children at highest risk of losing ambulation.
• Duchenne UK is calling on the NHS to make givinostat available to both ambulant and non-ambulant boys to end the ‘cruel’ postcode lottery.
• The National Institute for Health and Care Excellence will hold its first committee meeting on givinostat in July 2025 to determine national guidance and pricing.