Kilkenny Friedreich ataxia campaigners continue fight despite HSE disappointment

HSE senior management will meet on Tuesday to make the final decision

Published 19th Aug 2026, 18:30 BST Updated 19th Aug 2026, 18:31 BST Campaigners including David McInerney and Emily Felix from Kilkenny at a visit to Leinster House. HSE senior management will meet on Tuesday to make the final decision 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 campaign by people living with Friedreich’s ataxia to access Skyclarys, the first treatment for the rare condition, is continuing despite the HSE Drugs Group recommendation that it should not be considered for reimbursement in Ireland.

The Drugs Group had delayed their statement by a month in order to refer the issue to the Rare Diseases Technology Review Group (RDTRG) for further expert consideration and although this wait had caused frustration, there was optimism within the campaign as the RDTRG issued a positive opinion of Skyclarys and advised for it to be made available.

This was replaced by shock and dismay however, as the Drugs Group subsequently went against this opinion, recommending that it should not be reimbursed, citing concerns over the drug’s efficacy in relation to its high purchase cost.

Emily Felix and David McInerney from Kilkenny have been involved in the campaign to secure Skyclarys for themselves and around 200 others in Ireland living with Friedreich’s ataxia as Emily continued a packed few months of media appearances and interviews by outlining the impact of the decision on RTE’s Prime Time this week.

Speaking to The Kilkenny People, she expanded further on the stress caused by waiting for the medication which has been shown to slow the progression of the condition, which affects the nervous system and motor skills, by up to 55% in some recipients.

Read More Kilkenny woman speaks about medication reimbursement on Prime Time as Fianna Fáil revolt grows Blow for Kilkenny campaigners as HSE group recommends against covering medication Kilkenny woman suing HSE over delays to medication access “I am devastated by this recommendation,” she said. “For people living with Friedreich’s ataxia, every month matters and every delay means more abilities lost that we may never get back.”

“This recommendation is incredibly disappointing, but it is not the end of the road. We will continue fighting for access to the only treatment available to slow the progression of our relentless disease.”

Though the Drugs Group opinion marks a major blow in the journey to access Skyclarys, it is not the final decision as the HSE senior management will have the last say on August 25.

Campaigners have organised a protest in Dublin on Sunday, August 23 at 12pm from the Garden of Remembrance to Custom House Quay in order to raise awareness ahead of the HSE meeting on the following Tuesday.

“We are asking the HSE to give us a chance to protect our independence, preserve our remaining abilities and preserve our futures,” Emily described.

“The protest on August 23 is about making our voices heard. We want decision-makers to see the people behind the statistics and understand what is at stake.”

“We are asking the public to stand with us. Together, we can show that people with Friedreich’s ataxia deserve a chance to live, not just survive,” she added.

The situation has sparked opposition throughout public and political spheres with 48 Fianna Fáil TDs, senators and MEPs, the majority of the non-ministerial parliamentary party, signing a letter calling on the decision to be reviewed and criticising the overall process of funding new drugs in Ireland.

The Government has been put in a difficult situation by the huge cost of providing Skyclarys, tens of millions over a five year period, demanded by the drug’s manufacturer Biogen.

Attempts to engage with the biotechnology company to ease the process of providing the medication are ongoing with seven Fine Gael Oireachtas members, including Carlow/Kilkenny TD Catherine Callaghan, meeting representatives to discuss a range of ideas such as a compassionate access programme.

While any measures that can potentially reduce the price of obtaining Skyclarys would be of benefit in getting it to the country, campaigners have stressed that the cost should not be a reason for the drug not to be reimbursed.

“The science has spoken,” asserted David to The Kilkenny People. “Skyclarys is proven to slow down the progression. It received a resoundingly positive recommendation from the science-led RDTRG.”

“The only issue for the government is money, human life should be more important than money. It would be cruel to deny us access.”

These sentiments have been echoed by local political figures including Mayor of Kilkenny, Cllr Andrew McGuinness who is also David’s cousin.

“This recommendation has caused enormous distress to families across Ireland and understandably so,” he said. “More than 200 people in this country are living with Friedreich’s ataxia, a progressive and life-limiting condition that robs people of their mobility, independence and quality of life.”

“These families fight battles every single day that most of us cannot begin to imagine. As someone whose own family has been affected by Friedreich’s ataxia, this issue is deeply personal to me.”

“I have seen first-hand the impact this disease has, not just on the person living with it, but on parents, brothers, sisters, cousins and entire families who carry the emotional burden every day,” he continued.

Fianna Fáil TD for Carlow/Kilkenny, Peter ‘Chap’ Cleere also released a statement earlier in the week expressing concern over the decision and urged for all measures be taken to ensure a positive outcome for those living with FA.

“I am deeply disappointed by the decision not to approve Skyclarys for people living with Friedreich’s ataxia by the HSE Drugs Group,” he outlined. “For those living with this devastating and progressive rare disease, this is not simply a decision on medicine.”

“It is about access to a treatment that could make a profound difference to their quality of life and their future. Patient advocates, their families and the wider Friedreich’s ataxia community have campaigned tirelessly for access to Skyclarys.”

“I know how much hope was placed in the decision, which makes this outcome all the more difficult. We need a positive outcome for those living with Friedreich’s ataxia, and if that isn’t going to be through the reimbursement of Skyclarys then we must find another alternative pathway to treatment.”

“We cannot accept a situation where people living with a rare and progressive condition are left waiting while a potentially life-changing treatment remains out of reach,” he concluded.