Kilkenny campaigners awaiting decision on rare disease medication

Kilkenny people living with Friedreich’s ataxia have been campaigning for access to groundbreaking medication

Published 7th Jul 2026, 16:00 BST Friedreich’s ataxia campaigners including Kilkenny’s Emily Felix and Carlow’s Oisín Pollard during a recent visit to Leinster House. Kilkenny people living with Friedreich’s ataxia have been campaigning for access to groundbreaking medication 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 conversation around access to medication for the rare disease, Friedreich’s ataxia, has been ongoing in government as a decision on reimbursing the drug is due next week.

Skyclarys has been shown to slow the advance of the progressive disease by up to 55% in some cases, but due to the massive purchase cost, it is out of reach without HSE and government assistance.

A sustained campaign from many people living with the disease, including several from Kilkenny such as Emily Felix and David McInerney, has pushed for access to the drug with activists making visits to Leinster House and Áras an Uachtaráín to raise awareness.

The HSE drugs group is scheduled to meet on Tuesday, July 14 with Skyclarys on the agenda, giving the 200 or so in the country with Friedreich’s ataxia some hope that the long wait for access to the medication might finally be nearing an end.

The issue has been discussed in the Dáíl and cabinet committees this week as representatives from Kilkenny and elsewhere have attempted to keep attention on Skyclarys.

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In a debate on the wider issue of access to rare disease medication, Fianna Fáíl TD for Cork North-Central, Pádraig O’Sullivan, raised the case of FA patients as an example to the plight suffered by many groups seeking access to groundbreaking medications.

“The Leas-Cheann Comhairle and the Minister of State will know that we are working with Friedreich’s ataxia patients who are undergoing a similar process regarding reimbursement of the drug Skyclarys, which, I understand, will be dealt with by the drugs group shortly,” he said.

“Still, here we are again. How many more patients’ groups or cohorts of people will have to plead for much-needed access to quality drugs? I again make the case that these people just want a hearing as expeditiously as possible.”

“Nine other European countries have approved that drug apart from the United States and a few other countries internationally. When are we going to step up to the plate with drugs like Skyclarys for Friedreich’s ataxia patients?” he added.

Carlow/Kilkenny TD and Fianna Fáíl Minister of State at the Department of Health, Jennifer Murnane O’Connor, spoke about meeting with families in her own constituency and stressed the urgency of the situation.

“I have met with a lot of families affected by Friedreich’s ataxia, particularly Emily and Oisín (Pollard),” she outlined. “As the Deputy said, it is important. It is important because I have met with so many families in Carlow-Kilkenny and with constituents who need this drug.”

“These families are waiting to get it urgently. Like everything, there is due diligence and funding is always spoken about. It is important that we know we have a date for it,” she continued.

The matter was also discussed at a Cabinet committee meeting on health the previous day where it was raised by Peter ‘Chap’ Cleere TD who pushed the Taoiseach, Micheál Martin, for an update on Skyclarys access and the situation of the hundreds of people waiting in Kilkenny and across the country.

“For people living with Friedreich’s ataxia, time is something they simply do not have,” he said. Every delay means more mobility lost, more speech lost and more independence taken away.”

“Families such as Emily Felix and her family in Kilkenny, Oisín Pollard and his family in Carlow and many others have campaigned with huge dignity and courage for access to Skyclarys, the first treatment approved for this condition, but unfortunately they continue to face delay and uncertainty while the disease continues to progress.”

“Will the Taoiseach update the House on what the Government’s position is on reimbursing Skyclarys? What message does he have for the young people and families who feel they are being asked to wait while an irreversible disease takes more and more from them every day?” he asked.

In his response, the Taoiseach sympathised with FA campaigners and signalled his hope that the outcome of the decision would become clear sooner rather than later.

“I have met quite a number of people as well,” he stated. “It is very distressing, difficult and challenging for the families and for Emily, Oisín and their contemporaries who want access to Skyclarys as quickly as possible.”

“Early on, there were issues in getting material from the company and so on, but all that has been overcome. I would hope that we will get a decision on that. Obviously, the Minister is trying to progress it as quickly as possible,” he concluded.