A Buttevant family fighting to secure access to a life-changing treatment for their teenage son has been left devastated after a decision on funding the medication was delayed once again.
Craig Coady and his son Paudie have become central figures in a growing campaign calling for access to Skyclarys, the only approved treatment for Friedreich’s Ataxia, a rare progressive neurological condition.
However, hopes of a breakthrough this week were dashed after the HSE Drugs Group deferred its decision on whether Skyclarys will be reimbursed in Ireland for a further three to four weeks.
For Paudie Coady and around 200 people living with Friedreich’s Ataxia across Ireland, the delay represents another period of uncertainty while dealing with a condition that continues to progress.
The Buttevant family’s campaign has gained widespread attention across Cork and beyond, with public representatives raising Paudie’s case in the Dáil and calling for urgent action.
Reacting to the latest delay, Craig Coady said the decision was “not the news we wanted” and described the outcome as heartbreaking for families affected by Friedreich’s Ataxia.
Craig said every additional week without access to treatment is significant because the condition is progressive and can result in further loss of ability over time.
Having previously lost his son Rory to Friedreich’s Ataxia, Craig has continued to campaign for Paudie and other families living with the condition, saying he wants his son to have every possible opportunity available.
He also expressed frustration that Skyclarys is already available to patients in several European countries while Irish families continue to wait for a decision.
The Coady family’s campaign has received support from local public representatives, with Cork TDs Ken O’Flynn and Thomas Gould both raising concerns following the latest announcement.
Cork North-Central TD Ken O’Flynn said the deferral was deeply disappointing for families who are waiting for access to treatment.
He highlighted the progressive nature of Friedreich’s Ataxia and said that delays have real consequences for those living with the condition. Deputy O’Flynn also pointed to the fact that Skyclarys is already reimbursed in several European countries, including Spain, France, Italy and Germany.
He said families deserve a clear decision and pledged to continue raising the issue.
Cork North-Central TD Thomas Gould also expressed his disappointment following the announcement, saying families who have been waiting for access to Skyclarys should not be left facing further uncertainty.
Deputy Gould said he has repeatedly raised Paudie’s case in the Dáil and believes people living with rare conditions should have timely access to treatments that may make a significant difference to their lives.
The Ataxia Foundation Ireland has also continued its campaign for reimbursement of Skyclarys in Ireland.
The organisation has highlighted that the treatment has received approval from both the European Medicines Agency and the US Food and Drug Administration, and is already reimbursed in a number of European countries.
Campaigners argue that Irish families affected by Friedreich’s Ataxia should have access to the same treatment options available elsewhere.
For the Coady family in Buttevant, the latest delay is another difficult moment in a long-running campaign.
As the HSE prepares to review the application again in the coming weeks, Craig and his family remain determined to continue fighting for Paudie and all those affected by Friedreich’s Ataxia.
For a family already carrying so much, their message remains clear, time matters.