HSE say cystic fibrosis drug “unjustifiably expensive”

Cystic fibrosis sufferers are left anxious following the HSE’s recommendation to cut funding for the Orkambi drug.

The HSE and producers Vertex Pharmaceuticals have attempted to negotiate the price of the drug, which is €159,000 per patient per year, after the National Centre for Pharmacoeconomics found the drug “unjustifiably expensive and not sufficiently cost effective”, despite Cystic Fibrosis Ireland stressing the necessity of taking the drug.

A spokesperson for Cystic Fibrosis Ireland say “this decision is of immense importance to people with Cystic Fibrosis and their families in Ireland.”

The HSE will “taking into consideration the manufacturers latest price offer”.

Speaking to Newstalk, cystic fibrosis sufferer Jillian McNulty says; “I am devastated – and very frightened… Orkambi has transformed my life. I couldn’t drive myself before Orkambi. I’m a lot stronger. It’s morally wrong. They [the HSE] need to see the difference it can make.”