A SCOTS father is considering moving his family south after the NHS in England approved a vital drug to treat his young son who suffers from a debilitating illness.
Gary Fegan said his five-year-old son Cormac has benefited from using Translarna to help him cope with Duchenne muscular dystrophy (DMD).
Cormac had been receiving the treatment after local health board, NHS Lothian, made an individual decision to administer the child the drug. The youngster has trouble walking and is constantly biting other children,
But Mr Fegan faces a dilemma over whether to move his family after The National Institute for Health and Care Excellence (Nice) approved the drug for treatment on the NHS in England, Wales and Northern Ireland.
This is because the £200,000-a-year treatment remains unavailable in Scotland for NHS patients on cost grounds.
Mr Fegan, from Longniddry, East Lothian, said it was a postcode lottery. He said: “It’s ridiculous that just four days ago this drug was refused in Scotland.
“The way I see it, it’s a case of two stops on the East Coast railway line.
“What makes it even worse is that there is a 28-day waiting period between a decision being made and it being published, so the Scottish Medicines Consortium would have known it was going to be approved down south when they announced they would not approve funding in Scotland.
“If we don’t get individual funding, we will be moving. It would be morally bankrupt if we didn’t make that decision. I can work from anywhere. There would be a lot to sort out, and we would have to find a new house and schools, but we would have to do it.”
Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: “Families in Scotland haven’t been given the same opportunity [as the English]. It is simply unacceptable that eligible boys in Scotland won’t have access to Translarna, which could make such a valuable difference to their condition and lives.”
After NHS Lothian confirmed individual funding for Translarna, his behaviour improved drastically and both his balance and speed have increased over the months.
However, Cormac will not be able to continue taking the life-changing medicine after the SMC ruled that Translarna is too expensive.
Nice confirmed that “Translarna represents an important development in the treatment of nonsense mutations DMD”.
“Potential benefits associated with Translarna are great enough to justify its cost to the NHS when the proposed managed access agreement is applied.”
Diana Ribeiro, director of research at Action Duchenne, said they were bitterly disappointed by the Scottish decision, adding: “The way it’s structured in Scotland is that very little time is designated for any drug – it’s not given the amount of time and substantiated evidence as down south.”
An SMC spokeswoman confirmed it was an “extremely expensive” medicine for NHS use, adding: “The committee was not satisfied that the company’s evidence on the benefits of the medicine was strong enough to justify its very high cost to the NHS.”
“We recognise how disappointing this decision is for patients and carers, as Duchenne Muscular Dystrophy is a devastating condition.”
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