O’Reilly hosts Dáil briefing for TDs and Senators on Orkambi and Cystic Fibrosis
Sinn Féin Health Spokesperson Louise O’Reilly this morning hosted a briefing for TDs and Senators in Leinster House on Orkambi and Cystic Fibrosis. The Committee of Parents of Children with Cystic Fibrosis spoke to the members on their own experiences and why the availability of Orkambi is so important.
Deputy O’Reilly said:
“The briefing this morning was organised to give parents of children with Cystic Fibrosis an opportunity to inform members about the new Cystic Fibrosis treatment Orkambi and about their desire to make this treatment available to their children.
“Deputy Gerry Adams and I met with a group of these parents previously and one of the outcomes from that was the need for an opportunity to make TDs and Senators aware of their situation and the challenges they and their children face. We in Sinn Féin were more than happy to facilitate them to do this.
“Today, parents told heartfelt stories of their daily routines and how their children’s lives are affected by living with Cystic Fibrosis. Their overwhelming desire is to see a resolution that will benefit their children, and that will ease the pressures on the health system into the future. While their frustration on the lack of movement on the price and negotiations was evident, there was unanimity in the fact that this must be an issue that all parties, all parliaments and all countries must work on collectively.
“While Ireland has the highest incidence of CF in the world, it is clear that the government, like others across Europe, are failing in their negotiations with the pharmaceutical company on pricing. We are asking Minister Harris to contact his counterpart in the North Michelle O'Neill inviting her to participate in a group action of Health Ministers to maximise leverage to reduce cost considerably in a negotiation with the pharmaceutical company involved.
“I was heartened by the action and determination of these families who came together to draw attention to this and identify the reality of CF in Ireland. Today’s briefing reinforced the need for cooperation.”