Cystic Fibrosis sufferers hit out at economist’s claims over vital drug

THE cystic fibrosis community is outraged and demanding an apology from a health economist who claims State funding of a life-saving drug for CF patients is putting others at risk.

Anthony McDonnell, an economist with the Wellcome Trust, a biomedical research charity based in London, sparked controversy when he claimed that State funding of the CF drug Orkambi would divert much-needed funds away from other deserving patients.

The drug, which is understood to cost about €160,000 per patient, per year, was recently made available to CF patients here following an agreement between the drug’s manufacturer and the Health Department.

Speaking on Newstalk Radio yesterday, Mr McDonnell said: “Every time the Government decides to fund something in our health system or anywhere else, they are essentially deciding not to fund something else. We only have a limited amount of money.

“Compared to Orkambi there are a large number of things you could do that would have a much greater impact on people’s lives,” he said.

But CF patient Jillian McNulty, who has been a vocal campaigner for the drug after her quality of life changed dramatically when she took part in clinical trials for it, said she was deeply offended by Mr McDonnell’s comments.

“Let me in a room with him,” the Longford woman said. “It’s absolutely shocking and disgusting what he said.”

Philip Watt, CEO of Cystic Fibrosis Ireland, agreed that an apology was needed.

“He should apologise for the hurt he’s caused,” he told the Irish Independent. “He is playing God, that’s exactly what he’s doing.

“It’s a very hardened, rightwing attitude and it’s extremely offensive.”

He also took issue with some of the points Mr McDonnell made, including claims that the Government agreed to fund the drug because it was “politically popular” instead of “putting the money where it could save the most people’s lives”.

But Mr Watt said the drug would actually save the State money in the long run.

“Orkambi has shown to reduce potential hospitalisations by up to 40pc. The CF population in Ireland combined spent over 15,000 days in hospital in 2015. Massive savings will be made in the existing health budget,” he said.