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Cystic Fibrosis Ireland has expressed its ‘dismay’ and ‘anger’ at the revelation that the Health Service Executive (HSE) will not fund the ‘ground-breaking’ drug Orkambi.

 

The HSE had entered into price negotiations with the drug’s manufacturer, Vertex Pharmaceuticals, in the hopes of agreeing to a reduced price.

 

Current estimations place the use of Orkambi at €160,000 per patient, per year – a sum which the National Centre for Pharmacoeconomics deemed too expensive.

 

 

News that the HSE would not be funding the drug in Ireland was ‘leaked’ today, in the Sunday Business Post, and cystic fibrosis patients across the country are understandably devastated.

 

Vowing to ‘fight the decision’, CF Ireland’s CEO, Philip Watt, expressed his deep ‘dismay’ over the news.

 

 

“It is rare that a therapy comes along that has been shown to reduce hospitalisations by up to 40 percent, and further, it significantly retards the progression of cystic fibrosis for those who stand to benefit from this drug,” he said.

 

He then called on Minister for Health, Simon Harris to ‘use his ministerial powers to intervene, to ensure that Orkambi is made available in Ireland for the 550 patients who stand to benefit’.

 

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