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Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

Givinostat access for Duchenne muscular dystrophy

Summary

The Deputy urges rapid reimbursement of givinostat and asks for access for eligible children; the Minister will press the Health Minister for progress.

I raise the issue of givinostat. I know it has been raised repeatedly but there was a packed audiovisual room briefing. There was welcome news on it yesterday. This is givinostat for Duchenne muscular dystrophy. It was recommended for reimbursement by the HSE drugs group and it is with the senior leadership team now. There are two specific asks I wish to raise with the Minister. First, this process must happen speedily. These children still do not have access to this drug, and they need access to it. Every day counts. The second ask is an important one. When it is recommended and reimbursed, it must be consistent with the National Institute for Health and Care Excellence, NICE, guidelines in Britain so that everyone who can stand or walk, with or without support, is included in the scheme. That is an important point. I would appreciate it if the Minister would bring that back.

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I thank the Deputy for raising an important point around the support for people with muscular dystrophy. It is a very debilitating condition. Obviously, from the interest and number of people who turned up to the audiovisual room, the will to support can be seen. I will raise it with the Minister, Deputy Carroll MacNeill. A significant amount of resources went into the Health Products Regulatory Authority, HPRA, and the drugs approval process in the context of budget 2026. New people were hired to get through the process quicker. I will raise the Deputy’s concerns with the Minister and ask her to revert to the Deputy directly.

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