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.

Sentiment score: -0.03

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

Sentiment score: -0.18