Alfie Pentony
On Tuesday, 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.
Said the Foyle MLA: “Anyone who listened to the story of young Alfie Pentony 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.
“Having raised this matter with the Health Minister, I welcome his commitment to working with the Belfast Trust to ensure that Alfie and other patients across the North can access 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 life-changing drugs like this are not accessible to 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.”
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