Medicinal Products Seanad Éireann — 2026-03-25 ============================================================ Seán Kyne (FG), Cultural and Educational Panel I thank the Cathaoirleach for choosing this Commencement matter this morning. I welcome the Minister of State, Deputy Butler. It is good to have a Minister from the relevant Department, in this case, the Department of Health. I want to talk about a particular case. I met a young girl and her mother on Monday in my office. While she gave me permission to use her full name, I will only use her first name here. Her name is Aoife and she is from Galway. She was diagnosed with Friedreich's ataxia in 2021 during her leaving certificate year. Prior to this, she had been misdiagnosed with apraxia. In October 2020, shortly after she turned 18, a neurologist in Galway took blood tests to investigate Friedreich's ataxia. She said that moment marked the first time she had heard the words "Friedreich's ataxia". From that point on, her life changed completely. As the Minister of State knows, Friedreich's ataxia is a rare inherited disease. It damages the spinal cord, peripheral nerves and the cerebellum part of the brain. It also leads to heart problems. The disease tends to develop in children in their teens and gets worse over time, with unsteady, awkward moments and a loss of feeling due to nerve injury developing as the disease gets worse. People with the disorder may have other health problems, such as diabetes and heart disease, along with the nervous system symptoms. That is according to Johns Hopkins Medicine. Symptoms can include trouble walking, tiredness, a loss of feeling that starts in the legs and spreads, loss of reflexes, slow or slurred speech, hearing loss, vision loss, chest pain, shortness of breath and heart palpitations. Aoife said that she chose to delay receiving the results of her tests until after her leaving certificate as she wanted to focus on her exams without the added weight of a serious neurological diagnosis, especially during the uncertainty of the Covid pandemic. When the diagnosis was finally confirmed, she said she, her parents and her sisters were thrust into the reality of where her future suddenly seemed frightfully limited. She grieved the life she had envisioned for herself. She is fortunate at this stage that she can still walk, but she lives with severe balance and co-ordination difficulties. Friedreich's ataxia is relentless and progressive. Every day brings further loss. As the Minister of State knows, a drug called Skyclarys can slow the progression of Friedreich's ataxia. Reimbursement of Skyclarys in Ireland would slow the progression of this disease and give Aoife and others the chance to maintain their strength and independence for as long as possible. She is one of approximately 200 people in Ireland suffering with Friedreich's ataxia. As I said, it is a hereditary genetic condition. Access to this treatment would not only help people like Aoife but also teenagers who are newly diagnosed and who, with timely intervention, may be spared some of the suffering experienced by those before them. It would offer hope not just to patients but to entire families. There was a briefing here recently. The Minister of State's colleague, Deputy Cleere, brought in a group of people, all of whom were in wheelchairs due to progression of the disease and the condition. What steps are being taken to ensure that the HSE might recognise and respond to the critical nature of Friedreich's ataxia during the current price negotiations with Skyclarys? How are the commitments outlined in the national rare disease strategy, which aims for a 180-day decision timeline, being applied in this case to prevent further delays in addressing this unmet need? Aoife went on to say that Ireland is one of the wealthiest countries in the world but there are issues in terms of access to orphan drugs, with only 20% of rare disease drugs being funded. There has always been talking about using bulk-buying capacity with other countries within the European Union. Is that something that could be looked at? Aoife indicated that if she has to travel and live abroad and move her family to gain access to this drug, that is something that they would have to consider. It should be a right. We should be able to look after people here in our own country. --- Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted. Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-03-25/debate/main Retrieved: 2026-08-14T04:54:46+00:00 Sitting date: 2026-03-25