People have been gathering outside the Dail from 1.30pm today to protest over groundbreaking drug Orkambi, which has a significant impact on the quality of life for cystic fibrosis sufferers.
They are pleading for affordable access to Orkambi drug, which could treat up to 550 Irish CF patients.
The HSE, however, is still in talks with manufacturer Vertex Pharmaceuticals about a 10-year deal that would fund the cost of Orkambi and another CF drug, Kalydeco.
The price of the drug per patient originally given by Vertex was €159,000 per patient, with the government insisting they were unable to fund that amount, which would be almost €400 million over five years.
Since then Vertex has lowered its asking price, however it has taken a lengthy time to begin to finalise a deal, and CF sufferers have repeated that they do not have the luxury of waiting much longer for an agreement on the drug.
Cystic Fibrosis is Ireland’s most common genetically inherited disease that primarily affects the lungs and digestive system of about 1,200 children and adults.
Today’s protest is organised by CF sufferer Jillian McNulty from Longford.
A minute’s silence will be held today for those who have lost their lives to CF, with people attending the protest holding purple balloons and purple roses as an expression of solidarity.
— CF Ireland (@cf_ireland) March 1, 2017
— Páraic Gallagher (@paraicgallagher) March 1, 2017
Enda Kenny told the Dáil that he expected Health Minister Simon Harris would finalise a deal for Orkambi in a matter of weeks.
— Fine Gael (@FineGael) March 1, 2017
Header image: CF Ireland/Twitter