The Clare Branch of Cystic Fibrosis Ireland says drugs companies are holding CF sufferers to ransom.
It comes following revelations that HSE is unlikely to fund the drug Orkambi, which has been described as a game-changing drug for many patients.
It emerged over the weekend that the HSE is unlikely to fund Orkambi, which could benefit 550 patients in this country.
Campaigners claim the drug slows the progression of CF and cuts the rate of hospitalisation.
The HSE says that to date, the drug has been considered "unjustifiably expensive" and that it is disappointed at the lack of meaningful engagement by the manufacturer, Vertex, in lowering the "exorbitant price" which has been pegged at 160,000 euro a year.
The Head of the state's medicines watchdog has today defended their recommendation not to give it the green light.
Professor Michael Barry is the head of the National Centre for Pharmacoeconomics.
Here there has been dismay following on from the rejection of Orkambi.
32-year-old CF sufferer Robert Cook from Kilrush has told Clare FM's Morning Focus that he needs the drug to live a normal life.
Cystic Fibrosis Ireland is calling on the Minister for Health to make Orkambi available as soon as possible.
It's Clare representative Kieran McCarthy, who's daughter suffers from Cystic Fibrosis, says research in the US has found long-term benefits from the drug.
He believes patients here are being held ransom by drugs companies.
A protest over the issue is due to take place outside Leinster House in Dublin on December 7th.
