18 February 2025

SDLP Opposition Health Spokesperson Colin McGrath MLA has welcomed a commitment from Minister Mike Nesbitt to work with the Belfast Trust to secure access to new muscular dystrophy drugs.

Mr McGrath used his topical question to raise the issue during questions to the Health Minister in the Assembly on Tuesday.

It comes after 12-year-old Alfie Pentony from Newry shared his story of being unable to access drug Givinostat to treat his Duchenne muscular dystrophy.

The drug has been approved for use in the UK, but the Belfast Trust has said they do not have the capacity to apply for the Early Access Programme.

South Down MLA Mr McGrath said:

“Anyone who listened to the story of young Alfie Pentony this morning would have been moved, not just by the struggles he has experienced at such a young age, but at his strength and bravery at speaking up for himself and other young people living with Duchenne muscular dystrophy. While Alfie and his family should be commended, we should not be in a position where patients are being forced to advocate for their own health-care at 12-years-old.

“I took the opportunity to raise these issues with the Health Minister in the Assembly today and welcome his commitment to working with the Belfast Trust to ensure that Alfie and other patients can get access to this medication which would enable them to enjoy the best possible quality of life while dealing with this condition.

“This situation again underlines the desperate situation facing our health service, when the Belfast Trust cites it does not have the capacity to offer life-changing drugs like this to our young people, that should give us all pause. I look forward to working with the Minister to ensure that this drug becomes available as soon as possible so that Alfie and other young people living with Duchenne can benefit from it.”