Second hospital Trust starts dosing with givinostat under Early Access Programme
A second hospital Trust, Singleton Hospital, has starting dosing Duchenne muscular dystrophy (DMD) patients with givinostat through the Early Access Programme (EAP). Eleven-year-old Billy Sole has begun to receive givinostat to treat his DMD after receiving it from the University Hospital of Wales pharmacy and being treated at Singleton Hospital in Swansea.
First dosing through EAP last month
This follows Leicester Royal Infirmary, which was the first UK site to start treating DMD patients with givinostat through the EAP.
Billy’s mother Clair said:
“While I am delighted that Billy is now being treated with givinostat, I am very sad and frustrated that so many are being denied access to it. I know how hard that is as I was in the same position until very recently. It was so tough to know that there was a drug that could slow down the progression of Billy’s DMD, but that he couldn’t access it. I want everyone eligible for givinostat to be able to access it now.”
Dosing commencing at a second site now means that there is dosing with givinostat taking place through the EAP in two UK nations – England and Wales – but not Scotland and Northern Ireland.
Legal action in Scotland
A group of parents of children with DMD are threatening legal action in a desperate bid to force the NHS to provide access to givinostat.
Mhairi Harvey, whose seven-year-old son Michael has DMD and is among the parents preparing to take action, said:
“How does this fit in with UN Rights of the Child which since last year is part of Scots law making it legally enforceable. Article 24 guarantees every child the right to the highest standard of attainable health. The way children with Duchenne are being treated is in complete breach of this and needs to be rectified immediately. Our boys don’t have time, give them their medicine now.”
Meeting with Northern Ireland Health Minister
While a group of parents of children with DMD is meeting Northern Ireland Health Minister Mike Nesbitt to discuss the issue.
Twelve-year-old Alfie, who has DMD, has publicly called for access to givinostat for him and everyone with DMD.
His mother Colleen Pentony, who will be meeting the minister, said:
“Time is muscle and it is torturous to know that a treatment that can slow down the progression of my son's disease is freely available but he can't access it. I am urging the minister to do all he can to help my son Alfie and everyone who is eligible to be given givinostat.”