Kilkenny woman speaks about medication reimbursement on Prime Time

The majority of Fianna Fáil non-ministerial parliamentary party members have signed a letter raising concerns about the recommendation to not reimburse medication to treat Friedreich’s ataxia

Published 14th Aug 2026, 13:30 BST Updated 14th Aug 2026, 14:21 BST Emily Felix on Thursday’s Prime Time The majority of Fianna Fáil non-ministerial parliamentary party members have signed a letter raising concerns about the recommendation to not reimburse medication to treat Friedreich’s ataxia 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.

Emily Felix from Kilkenny made her second appearance on RTE’s Prime Time to speak about this week’s HSE Drugs Group recommendation against reimbursing Skyclarys, the first medication to treat the rare neurological condition Friedreich’s ataxia, which affects her and around 200 others in Ireland.

After a one month delay caused by the Drugs Group referring the case to the Rare Diseases Technology Review Group (RDTRG) for further input, optimism was high after the RDTRG issued a positive review of Skyclays and advised its reimbursement in Ireland.

This was short lived however, as on Tuesday the HSE body went against this advice and recommended that the drug not be made available in Ireland, citing concerns over its efficacy in relation to cost.

The statement has sparked national public backlash and also from the Fianna Fáil parliamentary party, with 48 TDs, senators and MEPs signing a letter to the HSE urging all possible measures and supports to be provided to people with Friedreich’s ataxia and their families.

The signatories comprise the majority of the non-ministerial members of the party and also called the country’s system for funding new drugs “broken and not fit for purpose.”

Emily made the journey to Dublin to speak on Thursday’s Prime Time, outlining her dismay at the HSE Drugs Group recommendation and the struggles she has faced since Skyclarys was approved in the EU in 2024.

“I had a huge amount of hope and belief that the process would continue to be science-led and would be recommended for approval,” she said.

“I’ve lost abilities in those two years that I’ll never regain. I’m terrified of what more is to come and I know it’s only going to get worse without a disease modifying treatment.”

“The cost needs to be at the bottom of the list in terms of criteria,” she added.

The HSE’s senior management will make the final decision on Skyclarys on August 25, while Emily has received permission from the High Court to proceed with a judicial review against the organisation and the Minister for Health over the delay in being able to access the treatment.