Orkambi controversy: Maker of cystic fibrosis drug ‘ripping off taxpayer’

Taoiseach Enda Kenny has accused the maker of a life-saving cystic fibrosis drug of “ripping off the taxpayer” amid growing concern over the “excessive” price tag it is demanding.

Mr Kenny made the claim as he said the Government is willing to enter negotiations with the pharmaceutical firm involved to ensure patients are able to access the medication — if the company agrees to significantly lower its price.

Speaking during Dáil leaders’ questions, Mr Kenny repeatedly came under fire from Fianna Fáil leader Micheál Martin and Sinn Féin leader Gerry Adams over the controversy surrounding the cystic fibrosis drug Orkambi.

Despite being proven to save lives, the drug is not available publicly in Ireland as its maker Vertex wants the State to pay it €160,000 a year for every person they help instead of the €30,000 HSE recommended figure.

Addressing the issue in the Dáil, Mr Kenny said Vertex was “ripping off the taxpayer” by demanding the price must be paid if Irish patients want to get the drug.

Insisting that the US-based pharmaceutical firm is failing to put the lives of people before its own profits, he said the Government fully supports the HSE’s view that the €30,000 figure is appropriate.

“Vertex are ripping off the taxpayer here. It is not a political process that determines the value and the impact of the drug, that has been decided by those qualified in clinical practice.

“Clearly, this company are using cystic fibrosis patients to say we have a drug that enhances your quality of life, but the charge being put forward by the company is grossly excessive.

“The clinical person in charge of this [for the HSE’s pharmaco-economics group, Prof Michael Barry] has been very clear on this.”

The position was heavily criticised by Micheál Martin, who said it was vital Mr Kenny ended the “Mexican stand-off” between the Government and Vertex for the benefit of patients whose lives are at risk.

Urging the Taoiseach to “ensure there are negotiations”, he said while the “easiest thing to do is attack big bad pharma, it doesn’t resolve this” and that “nobody believes” the €30,000 HSE figure is credible.

“This hasn’t been handled well, it is not good enough. You can’t get a deal if it’s just hostility and bad blood on both sides,” he said.

After similar concerns were raised by Mr Adams, who said the Government “knows the price of everything and the value of nothing”, Mr Kenny said he continued to believe Vertex was “ripping off” the State.

However, he added that if the company is willing to reduce its price, the Government will negotiate in a bid to secure the lifesaving drug for the 500 people in Ireland with cystic fibrosis.

“Prof Barry pointed out that in his view Orkambi is not cost-effective at almost €160,000 per patient per year, he estimated the cost at €30,000,” said Mr Kenny.

“There is a big difference. If they [Vertex] are willing to come down from €160,000 a year, let’s see what they’re talking about.”

More on this topic

Research finds majority of people with cystic fibrosis can be treated successfully with three-drug comboResearch finds majority of people with cystic fibrosis can be treated successfully with three-drug combo

Lucky 13: Double lung transplant patient opens up about waiting game and living with CFLucky 13: Double lung transplant patient opens up about waiting game and living with CF

Mum and daughter with cystic fibrosis back campaign to fight conditionMum and daughter with cystic fibrosis back campaign to fight condition

Working life: What it's like to be a paediatric cystic fibrosis clinical nurseWorking life: What it's like to be a paediatric cystic fibrosis clinical nurse


Lifestyle

Tis the season for sequins and excess, but minimalists can stick to their style guns in the season’s next level neutrals. From low-key glitz that’s perfect for party wear to the wardrobe heroes with trans-seasonal appeal, slide into neutral for maximum style with minimal effort. Carolyn Moore reports.Low-key glitz for minimalists with this season's neutrals

How to plump, hydrate and get rid of spots fast before your Christmas party.The Skin Nerd: Getting your quick fix for the festive party season

Irish photographer Seamus Murphy brought music star PJ Harvey to Afghanistan to film part of their documentary, writes Esther McCarthy.Headlong into the war zone in new documentary

Kya deLongchamps shows us how to champion our environmentWinter greens: How to champion our environment this season

More From The Irish Examiner