MacSharry says Orkambi ordeal illustrates problem with early availability of new drugs
A Sligo/Leitrim TD says the situation surrounding the CF drug Orkambi has highlighted the need to speed up the process of making new drugs available once they have been approved. Fianna Fail Deputy Marc MacSharry says that while he welcomes the agreement now made with manufacturter Vertex for the drugs…
Campaigners set to hold minute’s silence after Minister confirms welcome deal on Cystic Fibrosis drug
Cystic fibrosis campaigners will gather outside the Dáil this lunchtime to hold a minute’s silence to honour those who have lost their lives to the disease. Health Minister Simon Harris announced last night that the HSE has reached a deal with pharmaceutical firm Vertex to provide groundbreaking drugs to about…
Cystic Fibrosis campaigners hopeful ahead of third national protest
Campaigners to secure approval for a new ground breaking drug for people with Cystic Fibrosis in Ireland are hoping to have a positive announcement this week. They are holding their third protest outside the Dail at lunchtime tomorrow in an effort to highlight the need to for the drug Orkambi.…
Health Minister confirms ‘final stages’ of Orkambi talks underway
The HSE will today enter the ‘final stages’ of talks to agree the price of a major new drug for Cystic Fibrosis. Senior management will spend the rest of the week in discussions with Vertex over the cost of the drug Orkambi. It’s been heralded as a ‘wonder drug’ for…
Sligo TD calls for Orkambi decision without delay
There are calls for the Health Minister to make a statement on the drug Orkambi without delay. Sligo Leitrim Fianna Fail TD Marc MacSharry says he contacted the drug-manufacturing company Vertex on Friday. He says a spokesperson confirmed they have yet to hear back from the department of Health since…
Health minister wants more time to negotiate Orkambi deal as campaigners protest at Dail
More than a thousand Cystic Fibrosis campaigners are gathered outside Leinster House calling for the approval of the Orkambi drug. Protestors are holding a minute’s silence outside Leinster House for the second time in a matter of months. Campaigners will hold purple balloons and purple roses as an expression…
Cystic Fibrosis campaigners organising protest outside Dail Eireann
A Sligo Cystic Fibrosis campaigner is urging people to support a protest outside the Dail tomorrow. It’s the second-such protest being organised by CF patients headed by Longford campaigner Jillian McNulty. They are calling for what they claim is a ‘ground-breaking’ drug called Orkambi to be funded by the government…