Government must deliver Orkambi drug for cystic fibrosis patients – Adams
Sinn Féin President Gerry Adams TD, speaking in the Dáil during Leaders’ Questions this afternoon, has urged the Taoiseach to pursue all options to ensure access to the Orkambi drug for cystic fibrosis patients and to give a commitment to patients who are candidates for the drug that they will receive it while negotiations with the manufacturer are ongoing.
Teachta Adams said:
“Ireland has the highest number of people suffering from cystic fibrosis in the world and the largest proportion of families with more than one child suffering from the condition.
“According to ‘Cystic Fibrosis Ireland’, it affects around 1,200 adults and children in the State and citizens here suffer with some of the most severe strains of the disease. There are also 455 citizens with cystic fibrosis in the north.
“Oireachtas members have heard in the past two weeks two emotive and heart-breaking presentations from citizens living with cystic fibrosis and their family members. We have heard from parents who have buried their children, and patients who manage gruelling daily medical regimes and who endure recurrent hospitalisation.
“Many of them are valiantly battling for the opportunity to access the potentially life changing drug, Orkambi. Only forty citizens have been able to secure Orkambi on a trial basis.
“I have asked the Minister for Health Simon Harris numerous questions about where the negotiations on Orkambi and other drugs are, but we are none the wiser. The families have requested six times to meet with the Minister and I would ask the Taoiseach to ask him to meet them as a priority.
“Some of the families were told recently by Vertex that the company was open to a risk-sharing model of payment among other payment schemes so I would urge the Taoiseach to confirm if all options have been pursued with Vertex.
“I understand that the Minister for Health is in Lisbon today, and I agree that a collaborative approach could lead to significant reductions in prices and I would commend that approach.
“While the Minister for Health in the north, 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. I would urge the Taoiseach to commit to formally approach counterparts in the Assembly and other EU member states as part of a collaborative discussion to secure access to Orkambi.”
“There is a real urgency about the provision of this drug and would ask the Taoiseach to consider a proposition of giving a commitment to the families who are candidates for the drug that they will receive it while negotiations are ongoing, even on a trial basis.”