An orphan drug ‘Givinostat’ has been recommended for approval by an Oireachtas committee on Drugs Use.
It’s to treat Duchenne Muscular Dystrophy, a genetic disorder mainly affecting males, which causes progressive muscle weakness.
The drug was approved for use in the European Union in June of 2025, but was not approved for reimbursement in Ireland.
Recently, Deputies Pearse Doherty and Pat ‘the Cope’ Gallagher raised the cases of young Donegal boys Aaron Langan and Diarmuid O’Sullivan, whose lives could be improved by the drug.
The National Centre for Pharmacoeconomics recently said reimbursement should not be considered unless the drug’s ‘cost-effectiveness’ is improved.
A study shows it costs from 92 thousand to 334 thousand per year, per patient, depending on the dosage.
