'An opportunity to live life rather than just exist' - Protest for people with Friedreich's ataxia (FA)
Protestors ask: "How much our lives worth to the HSE?"
People suffering from rare neuromuscular condition Friedreich's ataxia (FA) are fighting for access to life-improving medicine.
Patients with the genetic disorder are calling on the HSE to reimburse patients who use the drug Skyclarys; a medicine that slows down the progression of FA.
Despite being approved in eleven EU countries, the drug has not been greenlit in Ireland.
In December 2025, the National Centre for Pharmacoeconomics (NCPE) recommended that the drug not be reimbursed by the HSE due to high costs. Last month the HSE Drugs Group upheld that recommendation, citing “limitations and uncertainties associated with the available clinical efficacy data”.
The current price of the drug is €280,000 per patient per year, with a five-year budget impact of around €130m. The HSE Senior Leadership Team will hold a meeting to make a final decision on the reimbursement of Skyclarys on Tuesday August 25.
This Sunday August 23, a demonstration will be held in Dublin ahead of the final HSE meeting. The event will begin at noon in the Garden of Remembrance and move to Custom House Quay for speeches from campaigners Niamh Ní Hoireabhaird, Eric Fitzgerald, Sinéad Maher, and Aoife Gavan.
A secondary school teacher from Waterford City spoke about the impact of the condition on her life and family.
Sinead Maher's husband Jason suffers from FA. She said: "Ultimately I want the HSE management team to reimburse skyclarys to give every FA sufferer time, and an opportunity to life rather than just exist….
"I want my children to have a father that can continue to be present and active in their life and also so that every future FA patient doesn’t have to fight for their lives."
Emily Felix, a trainee solicitor from Kilkenny, was diagnosed with FA when she was 12 years old. She will be acting as moderator on Sunday.
She said: “We are asking for this decision not to be reduced to a question of cost alone. Behind every statistic is a person whose condition is progressing every day while they wait for treatment.
"Skyclarys is the only approved disease modifying treatment for Friedreich’s Ataxia, and for people like me suffering with this relentlessly progressive disease it represents our only opportunity to slow the relentless progression of this disease.
"We are asking decision-makers to look beyond spreadsheets and budgets and see the human reality of what is at stake.
"We deserve the same chance that patients in 11 other European countries already have; the chance to preserve the abilities we are trying desperately to hold onto, protect our futures, and live our lives with hope and dignity rather than uncertainty and suffering.”
