HSE is negotiating price for cystic fibrosis drug, Kenny says

The HSE is negotiating a price for the drug Orkambi for use in treatment of cystic fibrosis (CF) patients, Taoiseach Enda Kenny has said.

He said meetings were under way between the HSE and the pharmaceutical company that makes the drug.

“I hope an outcome can be arrived at, as has happened in a number of other cases in which the original price set by pharmaceutical companies was reduced to a level where the clinical assessment was it was worth the cost in terms of the improved quality of life it could give,’’ he said.

Mr Kenny said that, on June 1st, the National Centre for Pharmacoeconomics (NCP) had recommended Orkambi should not be reimbursed by the HSE.

According to the prices submitted by the pharmaceutical company that makes the drug, the cost would be €160,000 per patient annually, but the NCP indicated it would have to be below €30,000 to be cost-effective, he said.

“That is a clinical assessment, not a political one,” Mr Kenny said.

He said he would seek an update from Minister for Health Simon Harris on the matter.

Mr Kenny was speaking in the Dáil on Wednesday in response to Fianna Fáil leader Micheál Martin, who said Orkambi was the first drug to work on the underlying cause of cystic fibrosis for up to 50 per cent of people with the condition in Ireland.

“It has been shown to produce both a reduction in the worsening of CF requiring hospital admissions and a sustained increase in lung function and weight, which is an important issue in the context of CF care,’’ Mr Martin said.

Health benefits

He said there was no doubting the health benefits to be derived from Orkambi.

“The benefits are well reported, not just by those in the clinical trial but objectively,” he said.

Mr Martin said CF campaigner Orla Tinsley had written in The Irish Times about how generations should not suffer because a drug company and a government could not negotiate a real solution.

“There must be a price reduction,” he said.