Pauline O'Reilly (Green Party) | Oireachtas source

I thank the Cathaoirleach. I thank the Minister of State for coming to the Chamber today. As the Cathaoirleach has said, a number of Members have raised this issue, and Senator Buttimer has indeed been at the forefront on the issues around cystic fibrosis.

I am here for an update from the Minister of State. He will be aware that Cystic Fibrosis Ireland had called for a health technology assessment to be completed by the end of January. We are now into February. I submitted this Commencement matter at the end of January to get an update. There are 35 children and their families awaiting news. They had been denied the drug Kaftrio. I have been contacted by a former senior psychologist at the adult unit for cystic fibrosis in St. Vincent's University Hospital. She outlined to me the real psychological challenges for people when they are dealing with a long-term condition such as cystic fibrosis. We in Ireland have a particular propensity for cystic fibrosis. There is no cure and people are reliant on these drugs. It is immoral not to ensure every person who needs the drug can get access to it. I look forward to hearing the Minister of State's response. I would like to hear that the HSE had been in contact with the Minister for Health, Deputy Donnelly, and some confirmation that the health technology assessment is either completed or nearing completion. The families were disappointed to hear it needed to go through this step, albeit a step in the right direction.