Independent Ireland Cork North Central TD Ken O’Flynn has called on the Minister for Health to take action in relation to those suffering from Friedreich’s Ataxia.
The rare disease causes progressive damage to the nervous system and affects around 200 people in Ireland. In 2024, the drug omaveloxolone, branded as Skyclarys, is the first licensed drug approved in Europe for treatment of the disease.
O’Flynn has urged the Minister to fund extra capacity at the Combined Ataxia Clinic in Tallaght University Hospital immediately, so that people with the condition can be prescribed Skyclarys before Christmas.
The HSE confirmed reimbursement of Skyclarys, the only approved treatment for Friedreich’s Ataxia, in August 2026. However, advocacy group FARA Ireland has now written to the Minister, saying patients cannot get an appointment with their neurologist in time to be prescribed it, even though many have already had the required blood tests done by their GP.
It is understood that at a meeting with FARA Ireland on the 22nd of September, neurologists and administrators at Tallaght said that if the service stays as it is, not all patients would be prescribed the treatment until June 2028. Even with temporary measures, including cancelling other clinics, the rollout is expected to run until late February 2027.
According to Independent Ireland, the clinic looks after more than 80 people with Friedreich’s Ataxia, but because of a “lack of resources” it can only see them every two and a half years, while European and international guidelines recommend an annual review including a heart examination.
Deputy O’Flynn said,”In August we celebrated a hard-won victory when Skyclarys was finally approved. Families had waited years for that day. Now they are being told they may have to wait until 2028 to actually get it. That is not acceptable.
“Friedreich’s Ataxia is a progressive condition. It takes a little more from people every month. A treatment that sits on a shelf because there is no appointment to prescribe it helps nobody.
“The staff in Tallaght have been running this clinic without proper funding for years, and they have been honest about that. The problem is not their commitment. It is a failure to fund the service needed to deliver a treatment the State has already agreed to pay for.
“I am tabling questions to the Minister for Health this week, and I am calling for dedicated resources to be put in place now, so that every eligible patient is seen and prescribed by 31 December. Approval was the first step. Now it has to reach the people it was meant for.”
As Gript reported in August, campaigners urged Government figures to approve funding for the treatment which slows down the progression of the illness, although it does not act as a cure.
Read the full report by Maria Maynes here.