The Health minister is to press the Belfast Trust on its reasons for not making available a new drug to treat muscular dystrophy.
Mike Nesbitt insisted he would follow up on the issue after a 12-year-old boy from Newry said it was “cruel” he could not avail of the drug Givinostat.
Alfie Pentony was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of four. DMD is a severe form of the genetic muscle weakening condition muscular dystrophy.
Alfie’s family said the drug, which is available in other parts of the UK to certain eligible patients, could slow the progression of the incurable condition.
The Belfast Trust has said it is currently unable to offer the drug under an Early Access Programme (EAP) as it would require extra staffing resources.
Alfie’s case was highlighted on BBC Radio Ulster’s Nolan Show on Tuesday morning – prompting an Assembly question to Mr Nesbitt by the SDLP’s Colin McGrath later in the day. Mr McGrath said the drug could delay the muscle wastage that will eventually require Alfie to use a wheelchair.
“Once such muscle wastage commences, he would be unable to avail of the drug, and therefore timing is critical,” said the South Down MLA.
“Minister, the new drug has been approved by Nice (National Institute for Health and Care Excellence) and is available via an early access programme in other parts of the UK, but it is not available here in Northern Ireland. Is it fair that Alfie and others who have contacted our constituency offices are being deprived access to such drugs?”
Mr Nesbitt replied: “I think in this instance, it is my understanding that it is the Belfast Trust who make the decision about whether this young man is allowed that drug or not. I am following up with the Belfast Trust to further understand their decision making process.
“Several members have approached me about this new drug for their constituents. On the face of it, and I’m not a clinician, it looks like it is a revolutionary and very positive development, and I would be keen to see it rolled out at pace, particularly for a young man like the one you referenced.”
Mr McGrath stressed the need for urgent action.
“The word that was used by Alfie today is that not getting access to that is cruel,” he added.
“That’s the words of a 12-year-old to members of this Assembly – it’s cruel. I hope that we can overcome and ensure that he is able to get access to those drugs along with others.”
Mr Nesbitt responded: “I will assure the member that I’m on that case.”
In a statement, the Belfast Trust said: “The drug is available for an Early Access Programme (EAP) for eligible patients, pending decisions about wider access following Nice recommendations. Currently Belfast Trust is not in a position to proceed under the EAP as its implementation will need to be managed within defined and agreed protocols and additional staffing resources will also be required to ensure the treatment can be provided safely.
“We recognise this will be very disappointing for families and the Belfast Trust sincerely apologises to them. Should Nice recommend treatment with Givinostat Belfast Trust will liaise with commissioning colleagues in the Department of Health’s Strategic Performance and Planning Group (SPPG) to establish what is needed to allow the trust to be in a position to support its delivery.”
The trust said the Royal Belfast Hospital for Sick Children provided “comprehensive care” for patients with DMD and was also part of the NorthStar clinical network, which consists of consultants, physiotherapists and other allied health professionals at 23 specialist paediatric tertiary centres across the UK.
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