Gerry Adams (Louth, Sinn Fein) | Oireachtas source

Tá mé ag cur an ceist céanna. As the Taoiseach knows, the island of Ireland has the highest number of people in the world suffering from cystic fibrosis and the largest proportion of families with more than one child who suffers from the condition. According to Cystic Fibrosis Ireland, it affects around 1,200 adults in the State and citizens here suffer some of the most severe strains of the disease. There are also 455 citizens with cystic fibrosis in the North. In the past few weeks Oireachtas Members have heard two heartbreaking and emotional presentations, one hosted by Teachta Louise O'Reilly, made by citizens living with cystic fibrosis and their family members. We have heard from parents who have buried children and those who manage gruelling daily medical regimes and endure recurrent hospitalisation. Many of them are battling valiantly to be given the opportunity to access the potentially life-changing drug, Orkambi. Let us take the case of Finn Whitmarsh whose family members are living in fear that they will not be able to access the treatment that would give him a new quality of life. For Finn and his parents, Linda and Ronan, drugs like Orkambi have the potential to keep him well and assist in managing his condition. Finn is two and a half years old and has been hospitalised 38 times. Cathal Gallagher is nine years old and his health was good until recently. He has developed lung issues. The medication he is taking has affected his liver which has been permanently damaged. He is featured on the #YesOrkambi mural on the quays in Dublin. Only 40 citizens have been able to secure Orkambi on a trial basis, of whom Jillian McNulty is one. I asked her how patients were chosen and she said it was the luck of the draw.

I have asked the Minister for Health, Deputy Simon Harris, numerous questions about where the negotiations on Orkambi and other drugs stand, but we are none the wiser, as he has not told us. The families have requested six times to meet him. Will the Taoiseach ask him to meet them as a priority? Some of them were told recently by Vertex that it was open to a risk-sharing model of payment, among other payment schemes. I am not sure if I heard the Taoiseach properly a moment ago when he appeared to say Vertex was ripping off the taxpayer. That is what he said. I checked with my colleague. It is an extraordinary allegation and begs the question that if he is saying the company is ripping off the taxpayer, what is he doing about it? Will he confirm if all options have been pursued with Vertex? I understand the Minister is in Lisbon today. I agree absolutely that a collaborative approach could lead to significant reductions in prices and commend that approach. While the Minister in the North, Ms Michelle O'Neill, has no direct responsibility in the matter, she has indicated a willingness to work with the Minister here to assist in the process. Will the Taoiseach commit to formally approaching counterparts in the Assembly and other EU member states as part of a collaborative discussion to secure access to Orkambi? Will he tell us what he will do following his allegation that the company is ripping off the taxpayer, while citizen patients suffer?

See this speech in context