Medicinal Products
Dail Éireann — 2026-06-17
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Barry Ward (FG), Dún Laoghaire

I thank the Minister. I join with her in thanking the HSE for the work that has been done and also acknowledge her commitment to this. Anybody who has dealt with families who are suffering with this disease understands both the heartbreaking nature of it and the urgency involved.
Listening to what the Minister has said in relation to the progress and the managed access protocol, do we have a timeline for when it will be available? I accept entirely what the Minister has said about the clinical criteria for the application of the drug. That is entirely appropriate and, unfortunately, there will be boys, because of the delay in the application outside our control, who may not be eligible to receive the drug now.
For those who are still eligible and those who can still stand up independently or who can stand up, can we give them a timeline for when they might be assessed for that and the conditions under which it will be made available to them? I am conscious of the fact that time is muscle and the fact that this drug is the very best way available to sufferers of Duchenne muscular dystrophy to stop the progress of this disease and to stop the degeneration of their muscles, which is irreversible. For the families the Minister has been dealing with and I have been dealing with, can we give them a particular timeline for when they can hope to be clinically assessed, if that still has to happen, but more importantly to have access to this drug in the same way it is available, for example, to our cousins in the North of Ireland under the National Institute for Health and Care Excellence, NICE, protocols? Will the drug be available under the same conditions as it is available in the UK under the NHS?

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-06-17/debate/main
Retrieved: 2026-09-21T01:01:09+00:00
Sitting date: 2026-06-17