Robert Troy (Longford-Westmeath, Fianna Fail) | Oireachtas source

I thank the office of the Ceann Comhairle for selecting this extremely important topic. It is fair to say that access to appropriate healthcare is a fundamental right of all our citizens. I want to take this opportunity to acknowledge the huge progress being made by the Minister, Deputy Stephen Donnelly, and his team in ensuring that we improve our health service in the face of the global pandemic. Despite significant increases in investment there still remain challenges and problems. In an ever-evolving world there always will be. This is why we need the Government to respond to these challenges. It is important that this response is done in an efficient and timely fashion.

Most of us are aware of someone who suffers from cystic fibrosis and the debilitating disease it is. I compliment Cystic Fibrosis Ireland for the work it does in advocacy, supporting families and fundraising. Most of us remember that a number of years ago there was a very comprehensive campaign for the licensing of Orkambi and the huge difference that drug made to the quality of lives of so many people. I am told by the CEO of Cystic Fibrosis Ireland that a new drug, Kaftrio, is much better and makes even more of a difference to people's lives, improving their quality of life. Unfortunately there is a cohort of approximately 35 children aged between six and 12 years who are excluded from this drug because of their genotype. This is despite medical people knowing that the drug will work and greatly enhance the quality of their lives.

I am aware the National Centre for Pharmacoeconomics, NCPE, is in the process of carrying out a health technology assessment, HTA, and that the HSE has prioritised this. I thank the Minister for ensuring this was prioritised. Through the Minister of State, Deputy Collins, I ask that the Minister encourage the HSE to have this process brought to a conclusion as soon as possible and for the HSE to give a commitment not to procrastinate thereafter but to come forward with a positive decision. Every delay is causing irreparable damage to these children and potentially reducing their life expectancy.

A young boy in my constituency, Ciarán Kilmurray, whose family know I am raising this issue, spoke to Joe Duffy before Christmas. Ciarán was in hospital right up until Christmas. I compliment his classmates from St. Kenny National School. They were precluded from visiting him because of his vulnerability. They did not want to put him at any greater risk so they made Ciarán a lovely video to show he was very much missed by the school. I am glad to say he is now back at school but he is sitting on his own with a mask on and cannot participate freely in school activities with his classmates. However, if he had access to this life-changing drug, he could participate. I am sharing this story with the Minister of State in the hope he will bring it back to the Minster to ensure this process is concluded without delay, that we have a positive outcome and that the 34 other children who are in a position similar to Ciarán can get access to this life-changing drug and go on to live their lives normally.

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