Taoiseach admits to urgency of drug approval for rare disease

A decision on whether a drug for Friedrich’s ataxia is approved is a “matter of urgency” for those with the condition, Taoiseach Micheál Martin has said.

However, he said that scientists and researchers must do their work, stating they are “not politicians”.

A Cork father who lost his young son to the rare disease, has told of his devastation after the HSE Drug Group deferred a decision on the life-changing drug, which he needs for his older son who also has the condition.

Paudie Coady from Buttevant is one of just 200 people in Ireland living with Friedrich’s ataxia.

The 16-year-old has a rare degenerative disease which progressively robs patients of their mobility and independence. His 13-year-old brother Rory died in September 2025.

The mother of the two boys, Delia, has Huntington’s Disease and is receiving treatment in Dublin.

Craig Coady, the father of Paudie and Rory, said on Cork’s Red FM this week that he fears that history could repeat itself.

“We prayed today would finally bring hope for Paudie,” he said. 

“Instead we have been told to wait [for a decision] again.”

Skyclarys, the drug for treating Friedreich’s ataxia, is not available in Ireland. The drug was approved in the US in 2023 and in Europe a year later.

The drug costs €280,000 a year. It is publicly funded in a number of European countries.

The HSE drugs group decided on Tuesday to defer a decision on the drug for another three to four weeks, pending further research.

The Taoiseach said that he understood this was a “matter of urgency for those with the condition of Friedreich’s Ataxia”.

He suggested that Biogen, the drug company behind Skyclarys, was “slow” in responding to the HSE.

“The commercial proposal was ultimately received from Biogen on May 27. They went through a lot of interactions before that, which could have been quicker, in my view, on the part of the company,” 

Mr Martin said.

Mr Martin said that he understood that communication needed to be worked on, and they are “scientists and people with expert knowledge who meet to assess drugs”.

“They are not politicians. We have to protect that process too, in the context of their assessment of the efficacy of drugs and so forth with regard to conditions,” he said.

“It is a serious and urgent situation for the families. Our hearts go out to them. It is a disease that progresses and has severe impacts on those with the condition.

“It has now been referred to the rare diseases technology review committee, and the minister is taking steps to get that established as quickly as possible to assess this.”

The HSE drugs group will meet within a month to further discuss the drug.