Fianna Fáil TD, Marc MacSharry has described the government’s decision to refuse funding for the introduction of a drug for people living with Cystic Fibrosis as absurd.
Deputy MacSharry said, “Cystic fibrosis is a very debilitating condition and anything that can be brought forward to improve people’s quality of life and extend life expectancy should be made available immediately.
While the HSE says the Cystic fibrosis drug, Orkambi, is considered to be unjustifiably expensive.
The health authority says it’s disappointed around the level of meaningful engagement by the manufacturer in lowering the exorbitant price of Orkambi for Irish patients and those elsewhere.
Negotiations on its use had been ongoing for almost six months with an official confirmation of its rejection now expected tomorrow morning.
Brian O’Carroll has been on Orkambi and says he’s felt the benefits: