Sunday 20 August 2017

Claims State funding Orkambi for cystic fibrosis patients will cost lives 'need to be challenged'

Jillian McNulty, who has cystic fibrosis, addressing a protest at Leinster House last year
Jillian McNulty, who has cystic fibrosis, addressing a protest at Leinster House last year

Kathy Armstrong

Claims that funding Orkambi for cystic fibrosis patients will cost lives is "bordering on offensive and needs to be challenged", a leading patients' organisation said today.

Philip Watt, CEO of Cystic Fibrosis Ireland has hit out at economist Anthony McDonnell's remarks and said that in the long run Orkambi "will save more lives."

Mr Watt said in a statement: "It is difficult enough living with a life threatening disease such as Cystic Fibrosis, but then to be accused of causing the deaths of other patients in the wake of gaining access to the first drug that treats the underlying cause of CF beggars belief.

"The overall thrust of the article is that health resources are finite and in ‘tackling one problem, we are in practice taking money away from somewhere else’...

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

"Time and time again when the issue of resources for Cystic Fibrosis services was raised by our association over the past 50 years, we were told such resources were not justified and the ‘many must be prioritised over the few’.

"If our association had accepted these arguments then people with CF would still be dying before they reached primary school in Ireland, as they did 40 years ago.

"Now thanks to a combination of better hospital services and access to ground breaking new medications such as Kalydeco and Orkambi, people with CF in Ireland are now expected to live into their 30s or 40s. "

Philip Watt, chief executive of Cystic Fibrosis Ireland (CFI).
Philip Watt, chief executive of Cystic Fibrosis Ireland (CFI).

Read More: 'We have limited money' - Economist claims funding CF drug Orkambi puts other patients' lives at risk

Mr Watt was speaking after Anthony McDonnell, an economist with Wellcome Trust, appeared on Newstalk Breakfast this morning and said he thinks the State funding Orkambi isn't cost-effective.

Mr Watt 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.

"For example, for a year of Orkambi you could fund 4,000 physiotherapy treatments. At the moment there is a four to five month waiting list for someone who can't work and is in physical pain but can't go to a physiotherapist because the waiting list is too long.

"There are people on trolleys across the country every day and some of them die because they don't get treatment on time.

"Whatever we do with our money there will be something that we won't be able to fund and at the moment it seems that we are choosing that is very expensive because it's politically popular, rather than putting the money where it could save the most people's lives."

Read More: 'Nobody ever expected to see my 30th birthday' - Sasha Delaney on life cystic fibrosis

Rachael Hegarty takes part in the cystic fibrosis protest in Dublin yesterday. Photo: Gerry Mooney
Rachael Hegarty takes part in the cystic fibrosis protest in Dublin yesterday. Photo: Gerry Mooney

Mr McDonnell disagreed and claims that Orkambi is good value from a financial point of view.

He said: "The Government have entered to at least two major agreements with the pharmaceutical industry in Ireland to reduce the costs of other drug therapies for which Ireland paid over the odds for many decades.

"The Minister for Health has stated that at least some of this these savings will be used to pay for new and innovative medications.

"The proposed increased use of generic drugs and bio-similars is estimated at bringing savings of €750m to the Government. In short the cost of Orkambi can be met by savings to the existing drugs budget in Ireland...

"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."

Kristofer Shekleton, who campaigned with Jillian McNulty for Orkambi and is a member of Equal Rights for Equal People in Ireland said he was "disgusted" by Mr McDonnell's comments.

He told Independent.ie: "His comments are absolutely disgusting, I've campaigned tirelessly for Orkambi with many people who have CF and he has given them the biggest insult I could possibly imagine.

"I can't describe how angry I am for everyone else, who does he think he is to say that?

"We know it's a costly drug but it saves lives, end of story, he can put a price on it but it does save lives.

"I'm calling him out on this because he's caused so much hurt and anger."

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