Gino Kenny (Dublin Mid West, People Before Profit Alliance) | Oireachtas source

A number of parents are listening to this debate. What they will want to know is when their children will get access to the drug, Kaftrio. There are 35 children being denied a drug that is hugely beneficial to treat their cystic fibrosis, CF. They will be asking questions of the HSE and the manufacturer, Vertex. A resolution has to be found immediately. It is unbelievable that others living with CF have access to this drug. It is hugely beneficial. Even in Europe, the vast majority of people living with cystic fibrosis have access to it. These parents and children are being denied and delayed. That is a terrible injustice for these children. I understand the Minister for Health will be meeting with some of the parents next week regarding this cohort of children. It is disappointing that the meeting has not taken place thus far. There is huge frustration and anger about this situation. I always try to put myself in the shoes of a parent of a child with CF Imagine knowing there is a medication that is being denied to your child. That is immoral. I am sure the Minister of State and everybody else will agree with that, given that a drug is available to people but these children cannot get it because of what seems to be a price dispute between the HSE and Vertex. A resolution has to be found. No financial burden should be put on parents and children at this stage. There is speculation that this could be referred to the National Centre for Pharmacoeconomics, NCPE. That is an arduous and lengthy process, to say the least. That could go on for well beyond three months. Time is of the essence for access to Kaftrio. I hope the Minister of State will have some news today for the 35 parents who are listening and seeking access for their children.

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