Update on Givinostat for Irish Duchenne boys

Where Things Stand Now
Big update: the NCPE has completed its review of Givinostat, and negotiations are now underway — but every day counts for Irish Duchenne boys.

Their recommendation states:

“The NCPE recommends that givinostat not be considered for reimbursement unless cost effectiveness can be improved.”

This means negotiations are now underway, but this is not the final decision. After negotiations, the HSE will consider reimbursement using broader criteria under the Health (Pricing and Supply of Medical Goods) Act 2013, including patient impact, social and ethical factors, and the benefits to patients and society — not cost alone.

For families living with Duchenne Muscular Dystrophy, these considerations are impossible to ignore.

 
Why Time Matters
Duchenne is progressive — muscle loss cannot be reversed.

Every month without treatment means strength that can never be regained.

For many families, there is a very real fear: our boys could lose eligibility while they wait.

That is why speed matters. Not just approval — timely approval.

Because for Duchenne families, every day counts. Time is muscle.

 
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