Blow for Kilkenny campaigners as HSE group recommends against covering medication

The HSE Drugs Group’s recommendation is not the final decision on access to Skyclarys, but comes as a huge disappointment to the 200 people with the condition nationwide

Published 12th Aug 2026, 13:30 BST Kilkenny's Emily Felix and David McInerney with fellow campaigners at a Leinster House visit earlier this year The HSE Drugs Group’s recommendation is not the final decision on access to Skyclarys, but comes as a huge disappointment to the 200 people with the condition nationwide 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.

People living with the rare neurological disease, Friedreich’s ataxia, in Kilkenny and across the country suffered a major setback as the HSE Drugs Group advised against reimbursing Skyclarys, the first drug developed to treat the condition on Tuesday.

A relentless campaign including Emily Felix and David McInerney from Kilkenny has been pushing for access to the medication which studies have shown can slow the progression of the disease by up to 55%.

A decision had been expected in the wake of the Drugs Group’s July meeting, however this was postponed by a month as the matter was referred to the Rare Diseases Technology Review Group (RDTRG) for expert consideration.

There had been optimism within the campaign as that group issued a report in favour of providing Skyclarys in Ireland, but this was replaced by shock and anger after the HSE Drugs Group went against this, despite the fact that it had caused the delay to pursue input from the (RDTRG).

The HSE group concluded that the current price being demanded by the drug’s manufacturer Biogen was substantially above the level usually regarded as cost-effective in Ireland related to its efficacy.

Skyclarys comes at a huge purchase cost of tens of millions of euros over a five-year period, but even so, multiple countries around Europe and further afield are already providing the medication which can slow the symptonms of the condition which affects motor skills, speech and the nervous system.

Though Tuesday’s decision will come as a bitter blow to those with Friedreich’s ataxia, the final outcome is to be decided at a meeting of HSE senior management on August 25 who can still opt to go against the Drugs Group recommendation and provide Skyclarys.

Campaigners say they will continue fighting and are seeking a meeting with Minister for Health Jennifer Carroll MacNeil.

Additionally, Emily Felix was recently given permission by the High Court to proceed with a judicial review against the HSE and the Minister for Health over the delays in the decision on reimbursement and is also seeking an interim arrangement for access to the drug.