The Access to Medicines and Medical Devices APPG has written to the Health Minister to highlight ongoing challenges with the Early Access Programme (EAP) for Givinostat, a life-changing treatment for Duchenne muscular dystrophy. Working closely with Duchenne UK, the APPG is raising awareness of the inequities in access caused by differences in resources and capacity across NHS Foundation Trusts. Currently, not all NHSFTs are able to provide the treatment, resulting in a postcode lottery that prevents some patients from receiving timely access. 

The APPG’s letter calls on the Department to address these barriers, ensure more consistent access across the country, and support measures that strengthen the programme’s capacity to deliver this vital therapy to all eligible patients. The Department has since responded to the letter, outlining its position and the steps it is taking to address the challenges raised.

Find the Departments response below.