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Cystic fibrosis campaigners shocked at the HSE’s decision not to fund Orkambi

Cystic fibrosis campaigners say they’re shocked at the HSE’s decision not to fund the use of drug Orkambi to treat the condition.

Carlow girl Kelsey Nolan and her brother Cody both have cystic fibrosis – they’ve spoken on KCLR and made calls for the HSE to fund the drug.

According to the Sunday Business Post today, the authority has decided the cost of the drug – understood to be over 150,000 euro a year – is too expensive and that it doesn’t deliver enough benefits to patients.

Negotiations on its use had been ongoing for almost six months with an official confirmation of its rejection expected tomorrow morning.