There is no attempt to talk down the benefits of the cystic fibrosis drug Orkambi, Minister for Education Richard Bruton has insisted.

He rejected claims by Fianna Fáil leader Micheál Martin in the Dáil that a Sunday newspaper report appeared “to be about talking down the effectiveness of the drug”.

“If it was so ineffective why would the HSE spend 25 to 26 weeks negotiating with the company?” he asked.

The leaked story suggested a formal announcement by the HSE was imminent after its drugs committee recommended against funding the drug on the grounds that it did not deliver sufficient benefits to justify the annual cost per patient of €159,000.

Mr Martin acknowledged there were difficulties with the cost, but the drug “is effective in terms of lung function, weight gain, quality of life and independence”.

Ireland has the highest incidence of the disease per head of population in the world, with about 1,200 sufferers.

The Fianna Fáil leader said he had met Jillian McNulty who has cystic fibrosis. She has been taking Orkambi and in the past 2½ years has been in hospital for only 10 weeks, compared to between eight and nine months a year before starting on Orkambi.

Families

Mr Bruton insisted “there is no attempt by the Government to talk down the benefits of this”. He said Ministers had met families directly affected, and were very aware of the concerns. However, he said that “approval of a drug of this nature has been taken out of the political process”.

Mr Martin said that until recently the Minister for Public Expenditure demanded the right to sanction any drugs.

Mr Bruton said the National Centre for Pharmoeconomics, which had expertise in this area, had clearly stated that this drug company was “not approaching this in the proper way, and is not showing sufficient concern for patients’ needs in the approach it is taking to the pricing of this product”.

He said Minister for Health Simon Harris wanted to build a coalition between a number of countries, including Australia, Canada, England and Scotland, to try to reach a sensible outcome.