Campaigners for people with Friedreich’s Ataxia will march in Dublin this Sunday, calling on the HSE to fund the drug Skyclarys.
The treatment can slow progression of the rare neurological condition, which affects around 200 people in Ireland, including trainee solicitor Emily Felix from Gowran, Kilkenny (more from her here) and Oisín Pollard in Carlow.
The demonstration comes two days before the HSE’s senior leadership team is due to make a final decision on reimbursement – many members of Fianna Fáil signed a letter calling on them to overturn the initial proposal (That’s here) while Sinn Féin too has sought the funding.
29-year-old Kildare journalist Niamh Ní Hoireabhaird, who was diagnosed with Friedreich’s ataxia when aged 13, says patients are losing vital abilities while they wait for access to treatment, noting; “In 2023 I was living independently in a different country, I was actually studying in Amsterdam for a Masters and now three years later I could absolutely not do that with how my condition has progressed, I very much rely on my Mum or on my husband”.
She adds; “Showering or dressing, all these simple things that people take for granted, I lost, I’m a future where I could loose even more so time is absolutely of the essence, we need to get the medication as soon as we can”.
