An tOrd Gnó - Order of Business
Seanad Éireann — 2026-05-12
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Manus Boyle (FG), Nominated by the Taoiseach

I would like to be associated with the calls of my colleagues about the National Ambulance Service. As we know, I am always very vocal in here about that. I thank my colleagues for taking it up and I thank my colleague for taking up International Nurse Day. My late mother-in-law was a nurse for many years and so is my wife.
Today, I want to talk about a very serious issue of the availability of givinostat for children with Duchenne muscular dystrophy, DMD. I know colleagues have raised it here on numerous occasions. DMD is a serious, lifelong condition for children and their families.
I have continued to raise this since I was appointed to the Seanad. Families deserve answers and action on this. I raised it at an Oireachtas health committee meeting in October and we were told it was hoped it would be sorted by the end of the year or the beginning of 2026. We are now nearly halfway through 2026 and families are still waiting.
I especially mention my local boy in Donegal and his family, who along with other families across Ireland, are living with DMD every day. These families are not asking for a miracle; they are asking for urgency, fairness and access to a treatment that has been approved in Europe. The drug company is not engaging with the HSE. We need to put pressure on to get it to engage. Families need clarity on this and we need progress. Children with DMD cannot afford endless delays. Time is muscle and that is the important thing. I will continue to raise this issue and fight for these children and their families.
Before I sit down, I thank my colleagues across the House. Every party has raised this issue in the past year and a half since I was appointed. It has nothing to do with politics. We need to get this issue sorted out for the children of Ireland. Time is crucial for this so I ask that we put pressure on the drug company to engage.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-05-12/debate/main
Retrieved: 2026-08-14T04:54:55+00:00
Sitting date: 2026-05-12