Drug used to treat MLD to become available in Ireland

The world’s most expensive drug Libmeldy is set to become available for use in Ireland following negotiations with the manufacturer on price.

The drug is used to treat Metachromatic leukodystrophy – or MLD – which is a rare and life-threatening inherited disease that affects the metabolic system in children.

The original price of the drug for the one-off dose was €2.8 million.

The breakthrough comes following the Beneluxa initiative, through joint negotiations involving Ireland, Belgium and the Netherlands in talks with the manufacturer, Orchard Therapeutics.

The condition seriously damages the brain and the nervous system in children.

It is estimated that three children here would be treated in a five-year period.

At the full cost that would have been almost €10m but a lower cost has been negotiated.

That price has not been disclosed.

Minister for Health Stephen Donnelly said that the Health Service Executive has approved the use of the drug here.

He said that the drug will make a significant positive impact on the lives of the children with the condition.

The Beneluxa talks started in December 2022 but ended after no agreement on price with the manufacturer at the time.