I know that the Taoiseach is familiar with those who suffer from Friedreich's ataxia, as it has been raised with him in recent weeks. It is now nearly 700 days and the HSE has still not made a decision on the reimbursement for the drug Skyclarys. Other EU citizens are receiving this transformational drug thanks to support from their governments. Why are the HSE and Irish Government not supporting Irish citizens who urgently need it?

At the start of the year, a group of young adults came to the Dáil to tell Members about their ordeal and what they were going through. Emily Felix was one of those people. At the time, she only needed one person to help her. Now, she needs two. I spoke to Emily's mother last night. She and her family feel helpless. The Minister will not meet with them and they are receiving only generic replies. I ask the Taoiseach to intervene and request that the Minister meet with these families and those who are suffering. I cannot stress enough how time sensitive this is.

I fully accept the urgency and seriousness of this for those who require Skyclarys. The engagement between the HSE and the company has perhaps at times been problematic. When I saw "problematic", delays have taken place, but meetings did happen. I will talk to the Minister again to see if we can get an outcome to this as quickly as we possibly can for all concerned.

They cannot wait any longer. They need it. It is criminal.