Healthcare Policy
Seanad Éireann — 2026-06-10
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Manus Boyle (FG), Nominated by the Taoiseach

I thank the Minister of State for coming in. Since I became a Senator 16 months ago, I have raised the issue of givinostat for children living with Duchenne muscular dystrophy, DMD, so many times, together with other colleagues in the Seanad. Last month, a large crowd of up to 2,000 people turned out in the Diamond in Donegal to support the children with DMD. In the health committee last year, we were told it would be sorted by Christmas. It was then pushed out to the early new year. Now, we are into June. Time is muscle for children with DMD. Every day, week and month that passes without access to this treatment can result in further decreased progression and permanent loss of physical ability. We are letting our children down. Families have watched as their children lose strength, mobility and independence. Children who were eligible for the treatment when givinostat was established over ten years ago in other countries are now maybe not eligible for givinostat because it has taken so long in this country. While families recognise the appropriate assessment procedures have to be followed, families are waiting and watching their children decline rapidly.
I am asking the Minister of State to outline the current status of givinostat, the timeline and when the final decision on this medicine will be made. These children have waited long enough. Time is muscle. It is important. I know of three children in Donegal with this. It is so sad to see them. I thought we would have this sorted long ago. It seems to have dragged on and on. As I said earlier, time is muscle. It is very important for these children all over Ireland. Of the three children in Donegal. One of them, Nathan, got a trial from England ten years ago. He is holding his own and is in good health. His brother, Dermot, however, does not have access to givinostat. This is something we need. Aaron Langan is the same. We need to get this sorted. We need to get it sorted soon.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-06-10/debate/main
Retrieved: 2026-08-14T04:55:02+00:00
Sitting date: 2026-06-10