Medicinal Products Dail Éireann — 2026-05-13 ============================================================ Pearse Doherty (SF), Donegal Yes. I want to raise the urgent issue of access to the drug givinostat for children living with Duchenne muscular dystrophy, or DMD, as it is commonly known. Givinostat was approved by the European Medicines Agency last June. Nearly a year has passed, the HSE is still reviewing whether it is going to cover the cost of this drug for children and adults across the State. What makes the delays around givinostat's availability particularly distressing - and I am sure the Minister of State knows this - is that it is only available to children who still have mobility. These children are in a race against time, and their parents are looking on as the HSE and the Government drags their feet while their children are seriously at risk of not being able to have the life-changing support offered by this drug. Matters are particularly urgent for young Aaron Langan. Aaron is a nine-year-old from Laghey in my county, Donegal. His family are fearful that if Aaron's mobility is further impacted by this condition that he will not be able to have this life-changing drug, even if the HSE approves its reimbursement. Aaron's mother and father were here in the Dáil last year campaigning and pleading with Government to get its act together to allow them access to this lifesaving drug. At that time, Aaron was walking. Today, he is in a wheelchair. As a result, the issue of mobility is absolutely crucial. This drug is not just a life game-changer for Aaron. Young Diarmuid O'Sullivan from Donegal is another example. Diarmuid is ten years of age. His older brother Nathan was on a trial in Britain. Nathan is now an adult who is able to avail of this drug and have a fulfilled life, yet Diarmuid, who is ten, is not able to have it. Imagine the distress of a parent knowing that one child has the drug that changes your life and the other child is denied it because the HSE and the Government have not got their act together. I ask the Government for a compassionate intervention to allow these drugs be made available to children who are in a race against time. --- 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/dail/2026-05-13/debate/main Retrieved: 2026-09-14T01:01:03+00:00 Sitting date: 2026-05-13