Enda Kenny: Government has ‘no say’ on funding cystic fibrosis drug

Taoiseach Enda Kenny has denied that the Government has a say on whether a groundbreaking drug for cystic fibrosis sufferers can be paid for, as he said it was a matter for health chiefs.

Decisions on whether new life-enhancing medicines could be subsidised under the HSE’s spending next year were not political or made by ministers, he told the Dáil.

Mr Kenny could not say yet whether the health budget would also cover an estimated €90m cost for an EU-approved drug called Orkambi which is changing the lives of CF patients.

Fianna Fáil leader Micheál Martin told the Dáil the new drug was considered a “game-changer” for CF patients.

“It can lengthen life, will improve quality of life and effectively reduce the number of hospital admissions for cystic fibrosis patients by 40%,” he said.

CF patients have told the Irish Examiner that using Orkambi, taken on an “open access” basis at present, improved their lung functions and made life almost normal.

However, the HSE 2016 service plan, released yesterday, makes no provision for funding the drug for patients next year, estimated to cost €160,000 per person annually.

“The HSE is clear that if the Government wants to fund it, it will have to provide it with additional money,” Mr Martin warned Mr Kenny in the Dáil.

Mr Kenny replied that decisions on funding drugs were not made by the Cabinet — despite its ability to sign off on the yearly spend by health chiefs.

“Decisions on which medicines are reimbursed by the taxpayer are not political and not ministerial.”

Decisions on whether to fund specific drugs for patients and illnesses were made on “scientific” and “economic grounds” by the HSE on the advice of the National Centre for Pharmacoeconomics, he added.

Further research was needed on whether to fund the reimbursement of the drug, he said.