Decisions on Orkambi and Kalydeco to be made at high level HSE meeting before end of February

Decisions on Orkambi and Kalydeco to be made at high level HSE meeting before end of February

Update 1 February 2017


Cystic Fibrosis Ireland has received many calls this morning about a headline in the Irish Times (1 February 2017) that states ‘Talks break down over cost of cystic fibrosis drug’.

We understand after seeking clarification with the HSE and the pharma company (Vertex) that this headline is premature and indeed on closer reading the headline is at variance with the article itself.

We understand (as stated in the article itself) that discussions within the HSE on Orkambi and the extension of Kalydeco are continuing and that a high level committee at directorate/HSE leader’s level will meet within the next couple of weeks to make a decision.

Cystic Fibrosis Ireland notes in the Irish Times report the ‘HSE is unlikely to give the go ahead for the drug without a firm indication from Government that extra funding will be available to pay for it’.

CEO of Cystic Fibrosis Ireland, Philip Watt stated ‘Judging from the amount of calls we received this morning there remains huge anxiety about the forthcoming decision to fund Orkambi and the extension of Kalydeco. This is little wonder as these are the first ever drugs to treat the underlying cause of Cystic Fibrosis (in respect of Orkambi - about 50% of the CF population in Ireland). The increase in lung function of up to 10% and the decrease in hospitalisations of 40% shows how effective Orkambi can be.’

Philip Watt further stated ‘Cystic Fibrosis Ireland urges the Department of Health and the Department of Finance to avoid an impending row and together agree a mechanism to fund these ground-breaking drugs. We acknowledge the challenges faced by government, but would point out that as well as proven significant health benefits these ground breaking drugs will bring other savings, especially through reduced hospitalisations and less dependency on other expensive medications and treatments.’