Kilkenny campaigners left frustrated as medication access decision is deferred

Skyclarys was first approved for use in Europe in February 2024 but is still not available in Ireland

Published 15th Jul 2026, 18:30 BST Campaigners including David McInerney and Emily Felix at Leinster House on Tuesday Skyclarys was first approved for use in Europe in February 2024 but is still not available in Ireland Sign up to our Kilkenny Live newsletter Sign up Thank you for signing up! Did you know you can manage your profile, and explore all of the available newsletters from Kilkenny Live within your account.

The wait for those living with the rare condition, Friedreich’s ataxia, will continue as a decision on reimbursing Skyclarys, the first drug to treat the disease, was deferred on Tuesday.

FA campaigners, including Emily Felix and David McInerney from Kilkenny , travelled to Leinster House to keep attention on the HSE drugs group meeting which had been hoped to give a decision on whether the medication would be reimbursed after a months-long effort.

However, those who made the journey from all corners of the country did not receive the news they’d been hoping for as the final outcome on reimbursement has been pushed back for another three to four weeks as expert input from specialists is sought.

Skyclarys is already being provided in several European countries along with the United States and the decision sparked anger as time is of the essence in halting the loss of motor functions and speech abilities brought on by FA.

The Taoiseach accepted that there were issues around the quality of communication during the reimbursement process but continued to defend what he called a science-based approach rather than a political one.

READ NEXT: Trolley figures on the rise again at Kilkenny hospital

“There are issues in terms of how this gets communicated, I accept that, but also up to now, since the 2013 Act, there hasn’t been a practice whereby there’s sort of a political parallel operation, if you like, whilst this group is meeting monthly,” he outlined.

“I think that we need to work around the communication of all of that. These are scientists and people with expert knowledge - they’re not politicians - who meet to assess drugs.”

“So we have to protect that process too, in terms of the efficacy of drugs and so forth in relation to conditions. But I think we all accept that ultimately there has to be a science perspective on this,” he concluded.

In a statement released after the decision was announced, Emily spoke about the hurt and fatigue that yet another period in limbo will cause the 200 or so people in Ireland with FA.

“Right now, I am absolutely heartbroken,” she said. “After 712 days of waiting, hoping, advocating and fighting, I honestly don’t know how much more of this I can take. I feel utterly hurt and deeply disappointed.”

“Every delay has a real cost. While reviews are requested and processes continue, my condition does not wait. Friedreich’s ataxia does not pause. It continues to progress every single day, taking things from me that I can never get back.”

“I know some people may see this as a positive step, but today it does not feel that way. Today it feels like more waiting, more uncertainty and more time lost. I am exhausted. I don’t feel like I have much fight left in me,” she added.