A Waterford family is calling on the HSE to reimburse the first approved treatment for Friedreich’s Ataxia ahead of a final decision on the drug.

Sinéad Maher, a secondary school teacher from Waterford City, travelled to Dublin with her husband Jason and their four children on Sunday to take part in a demonstration calling for access to Skyclarys.

Around 200 people in Ireland are believed to live with Friedreich’s Ataxia, a rare progressive condition which causes nerve damage, muscle weakness and loss of mobility.

Jason, who is 50, was diagnosed 24 years ago.

Speaking on WLR’s Déise Today, Sinéad said they were initially told there was no treatment available and that Jason’s condition would progressively deteriorate.

‘We were pretty much told, right, there’s no hope,’ she said.

‘But then this drug came on board and, you know, now there is hope.’

Skyclarys became the first treatment for Friedreich’s Ataxia to receive European approval in 2024, but has yet to be reimbursed in Ireland.

Biogen, the company behind the treatment, has disputed figures being reported around its potential cost to the State.

In correspondence sent to Ataxia Foundation Ireland, Biogen said it ‘does not recognise’ the current figures being reported on the medicine’s budget impact and does not believe they reflect the offer it submitted to the HSE.

The company said the treatment is currently approved and available in 11 comparable European countries and that it has contacted the HSE to continue discussions on access for patients in Ireland.

Sinéad stressed that families do not view the drug as a cure, but believe slowing the progression of the disease could give patients valuable time.

‘We know it’s not a miracle cure and we know that it’s not going to be the silver bullet that’ll save everybody,’ she said.

‘We’re just asking to give people time.’

Campaigners gathered at the Garden of Remembrance in Dublin on Sunday before making their way to Custom House Quay, where Sinéad was among those who addressed the demonstration.

The protest was held ahead of a meeting of the HSE Senior Leadership Team on Tuesday, August 25th, when a final decision on reimbursement is expected.

Sinéad said the family remains hopeful ahead of the meeting.

‘We have to be, don’t we, because if we don’t have hope, what have we got?’ she said.

‘I have to believe that we have got people in authority who are meant to put the good of their citizens ahead of everybody else.’