HSE urged to ‘think past price’ in protest over drug for Friedreich’s Ataxia

By Gráinne Ní Aodha, Press Association

A protest has been held to call on the HSE to make a drug for a rare neurological condition to be approved for reimbursement in Ireland.

Demonstrators said the HSE is due to meet to make recommendations on the pricing and reimbursement of medicines and it is expected to make a decision on the treatment for Friedreich’s Ataxia.

Emily Felix, 28, from Co Kilkenny, urged the HSE to look past price or politics and make an “ethical decision”.

She was 12 when she was diagnosed with Friedreich’s Ataxia, which causes irreversible loss of mobility, co-ordination and speech.

She has led calls for the drug Skyclarys to be made available for reimbursement to patients in Ireland.

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.

We are not going to regain any of the abilities we've lost, but it will give us time, and time when you're dealing with our progressive relentless disease, time is everything

Felix, who was with her younger sister Anna at the protest, said they are not suggesting the treatment is “a miracle pill” or a cure.

“We are not going to regain any of the abilities we’ve lost, but it will give us time, and time when you’re dealing with our progressive relentless disease, time is everything,” she said.

“We all want and we all deserve time with our loved ones.

“We want time to continue working, to continue studying, to continue travelling the world, to continue building a future.

“We deserve to build a future.

“We are Irish citizens, and we have all contributed to society in one way or another, and we will continue to do so, but we won’t be able to.

“We’ll have no quality of life if this treatment isn’t reimbursed, and the meaning of life for all of us is going to be diminished.

“I just hope the HSE and the Government will think past cost and think past political decisions and precedents and strategies and protocols and all that, and actually look at the lives, our real lives, and realise that we and the people we love deserve this treatment.”

She said they had not been formally told any information about the HSE meeting, but said they had received support from TDs and senators during their protest outside Leinster House on Tuesday.

The HSE has been contacted for comment.