Current status: Answered by Jenni Minto on 20 May 2025
To ask the Scottish Government what discussions it has had with NHS Lanarkshire regarding the administration of duvyzat for patients with Duchenne muscular dystrophy, in light of reports that NHS Greater Glasgow and Clyde is now administering the drug through the Early Access Programme, and what steps it has taken to identify and overcome any barriers faced by NHS boards, including NHS Lanarkshire, in administering the medication, in order to support safe, fair, and equitable access across Scotland.
NHS Greater Glasgow and Clyde (GGC) is the regional hub responsible for providing services to children with Duchenne muscular dystrophy (DMD) on behalf of the West region which includes NHS Lanarkshire. In response to concerns raised regarding access to givinostat in Scotland, the Cabinet Secretary has met with the four health boards, including NHS GGC. He has asked them to set out their timelines and approaches to the families with children with DMD covered by the national Early Access Programme (EAP), in the next two weeks. NHS GGC are planning three treatment cohorts, beginning week commencing 26 May 2025, with the second and third cohorts starting week commencing 28 July 2025 and 29 September 2025. In addition, the Chief Pharmaceutical Officer has been assured that the consultants have reviewed all eligible children and applied the broadest definition possible to the eligibility criteria to ensure that all children described in the EAP can access the medicine.