Today, five brave young people - David McInerney and Emily Felix from Kilkenny, Eric Fitzgerald from Mayo, Niamh Ní Hoireabhaird from Kildare and Oisín Pollard from Carlow - and their families attended the AV room to raise awareness around the rare disease, Friedreich's Ataxia. These five young people all suffer from Friedreich's Ataxia and they need the Government's help with regard to approving funding for the drug Skyclarys, which will make a huge difference to their lives. Today, their parents said, "Our kids don't have the luxury of time." They said, "Don't let the cost of this drug be the price of the lives of our sons and daughters." Young inspirational Emily Felix from Kilkenny, who is studying to become a solicitor, said that she had to record her voice on to an app so when her voice is gone, her family will remember what it sounded like. I am asking the Taoiseach and the Minister for Health to help these people and to urge the HSE to approve the funding for Skyclarys drug.

I was very pleased to meet with Eric, Emily, Niamh, David and Oisín. I thank the Deputy for bringing them in. I have already followed up on the different physiotherapy and other supports that should be due to them and to get an assessment of what they should be getting and what they are getting. With regard to the drug, we have a series of different drugs that are coming on stream. The Taoiseach and I have discussed the increasing the drugs budget. We are very aware of how much we are already spending on that, how much we want to provide and where we need to go with that. Crucially, with regard to one of their asks, we are shortening the process for the assessment of the reimbursement process, which is going to be 180 days. We do recognise the very considerable the impact that many of these drugs - without speaking to any one of them in particular - would have on people's lives and the cost of that to the State. Reconciling that is something the Taoiseach and I are very aware of.