TAOISEACH MICHEÁL MARTIN said there’s an “urgency” attached to the assessment of a drug to treat rare disease Friedreich’s ataxia, but refused to commit to a timeline.

Friedreich’s ataxia is a neuromuscular disease that mainly affects the nervous system and the heart. It is a hereditary disease caused by a gene mutation.

While there is no cure, it is a progressive disease and a drug called Skyclarys has been found to slow the disease progression and improve neurological function.

The treatment was approved by the European Medicines Agency in February 2024 and has been made available to patients in other European countries, but it is not available to around 200 patients in Ireland.

A Cork father who lost his son to Friedreich’s ataxia is among those calling for Skyclarys to be made available in Ireland.

Craig Coady’s son Rory died from the disease last year, aged 13.

His other son, Paudie (16) also has the rare disease.

Coady met with the Taoiseach in Co Cork last month and speaking to the Irish Examiner, Coady said Martin told him that he will “do everything I can to get the Skyclarys drug to your son and to 200 other patients”.

On Tuesday, the HSE met to discuss the drug and make recommendations around pricing and reimbursement – reimbursement meaning it will be covered for patients who have medical cards or who are covered by another State scheme – but the decision was ultimately relayed to the HSE Rare Diseases Technology Review Committee.

The committee is made up of 11 members of the HSE, including consultants with rare disease expertise, and two patient representatives. It meets only at the request of the HSE Drugs Group.

In an interview today on Cork’s Red FM, Coady said he received very little details arising from the HSE meeting on Tuesday and that a decision has been deferred for three to four weeks.

Coady warned that Paudie’s condition is worsening and that he could soon require a wheelchair.

“He [Paudie] told me a couple of weeks ago that he’s not afraid of dying, because if I die I’ll be with Rory.”

Raising the issue at Leaders’ Questions today, Sinn Féin’s health spokesperson David Cullinane said the group needs to be convened “urgently” and the matter cannot wait for months before a decision is made.

He highlighted the progressive element of the disease and said some patients’ conditions will worsen as they await a decision on the drug.

A group of campaigners on Tuesday protested outside Leinster House for the drug’s inclusion in the list of reimbursed medicines.

Emily Felix was among those protesting outside Leinster House. Last month, she told Ireland AM that “it’s very hard to hold on to hope knowing that the government know this drug has been available for almost three years”. 

Cullinane told the Dáil that it is his view that campaigners were treated “appalling” as they were forced to ask journalists and politicians for updates due to the lack of communication through official channels.

“When the news did eventually filter through, they were left devastated,” Cullinane continued.

Although he stressed he was aware the approval of drugs and medicines must go through the proper process, he said everyone living with Friedreich’s ataxia cannot afford further delays.

In response, the Taoiseach said: “There has to be a scientific input into whether medicines are effective or not, or whether they’re suitable for reimbursement.”

Martin said there was a delay on the company responsible for the drug in communicating with the HSE.

He added that the health minister has taken steps to establish the meeting of the committee.

“I accept that this is not the news that they [the families] wanted to hear,” said Martin.

While there is an “urgency” attached to the assessment of the drug, Martin emphasised the “science perspective” and the process through which such drugs are approved in Ireland.