Wednesday 22 November 2017

'Let me in a room with him' - CF patient's fury over drug funds claim

Jillian McNulty campaigns for Orkambi to be made available
Jillian McNulty campaigns for Orkambi to be made available

The Cystic fibrosis (CF) community is outraged after a health economist claimed that providing state funding for a life-saving drug for 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 will divert much-needed funds away from other deserving patients.


The drug, which is understood to cost around €160,000 per patient per year, was recently made available to CF sufferers here.

It followed an agreement between the drug's manufacturer and the Department of Health.

"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," Mr McDonnell told Newstalk Radio yesterday.

"Compared to Orkambi, there are a large number of things you could do that would have a much greater impact on people's lives."

CF patient Jillian McNulty, who has been a tireless campaigner for the drug after her quality of life changed dramatically during clinical trials, said she was deeply offended by Mr McDonnell's comments.

"Let me in a room with him," said the Longford woman. "It's absolutely shocking and disgusting what he said. How dare he. I'm livid."

Philip Watt, the CEO of Cystic Fibrosis Ireland, said an apology was needed.

"He should apologise for the hurt he's caused," Mr Watt told the Herald.

"He's playing God, that's exactly what he's doing.

"It's a very hardened, right-wing 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 is "politically popular" instead of "putting the money where it could save the most people's lives".

Mr Watt said the drug will save the State money in the long run.

"Orkambi has shown to reduce potential hospitalisations by up to 40pc," he said.

"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.

"As a patient group, we would know better than many the impact of the scarcity of health resources."

Mr Watt added that "time and time again" when the issue of resources for cystic fibrosis services was raised by the association over the past 50 years, they were told such resources were not justified and the many must be prioritised over the few.

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