Simon Harris moves to assuage fears over funding of drug

Cystic fibrosis campaigners have expressed dismay and anger after it emerged that a drug labelled a “game-changer” may not be funded by the HSE.

Reports emerged yesterday that the HSE is set to reject Orkambi after the HSE’s drugs committee unanimously recommended against funding its purchase, deeming it did not deliver sufficient benefits to justify its €159,000 annual cost.

Minister for Health Simon Harris stepped in to reassure CF patients that the HSE had not concluded its assessment process, and told patients: “I do not see this as the end of the process.”

It is understood there are 550 people in Ireland with a form of cystic fibrosis that could benefit from the drug.

In a statement, Philip Watt, CEO of Cystic Fibrosis Ireland, said the organisation would fight the decision and called on Mr Harris to intervene. Mr Watt also strongly criticised the manner in which patients learned of the news yesterday, claiming it was leaked “in a cynical way” even before the minister was informed, in what he said was a “disgraceful and heartless form of communication”.

The HSE later signalled that it was disappointed with the level of meaningful engagement with the manufacturer of the drug Orkambi in lowering its price to patients with cystic fibrosis. Mr Harris said he was upset at how the news emerged and added that he was frustrated with the “extraordinarily difficult” negotiations that have been continuing over the “exorbitant” price of the drug.

Orkambi user Jillian McNulty from Longford has been on the drug as part of a trial for three years and said it had saved her life when she was hospitalised with swine flu earlier this year.

Ms McNulty, 40, said she handed in a petition some weeks ago to manufacturers Vertex, requesting they lower the price, but she said using cost as a reason to discontinue its use made no sense.

“It would cost the State a lot more with me off Orkambi than with me on Orkambi,” she said.

Ms McNulty has already contacted her hospital to ascertain whether she will get a fresh supply, as her current supply is due to run out on Christmas Day.