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Ireland has successfully negotiated access to the world’s most expensive drug, Libmeldy, bringing hope to children battling the rare and life-threatening inherited disease, Metachromatic leukodystrophy (MLD) (via RTE).
The drug, manufactured by Orchard Therapeutics, is set to make a significant positive impact on the lives of affected children, marking a triumph after negotiations and a shared initiative with Belgium and the Netherlands.
Ireland Secures Access to World’s Costliest Drug, Bringing Hope to Children Battling Rare Disease
World’s Most Expensive Drug
Libmeldy, originally priced at a staggering €2.8 million (more than US$ 3 million) for a one-off dose, is designed to treat MLD, a disorder that wreaks havoc on the metabolic systems of children, causing severe damage to the brain and nervous system.
The breakthrough in negotiations followed the collaborative efforts of the Beneluxa initiative, involving Ireland, Belgium, and the Netherlands in talks with Orchard Therapeutics.
The drug’s administration involves collecting stem cells from the patient’s bone marrow or blood, modifying them, and then administering the drug through an infusion via a drip into a vein.
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While the full treatment cost for three children over five years was estimated to be almost €10 million, a lower cost has been successfully negotiated. However, the exact negotiated price remains undisclosed.
As RTE reports, Minister for Health Stephen Donnelly expressed his approval of the Health Service Executive for the drug’s use in Ireland, emphasizing the profound impact it will have on improving the lives of children grappling with this devastating condition.
The achievement came after the initial Beneluxa talks in December 2022 ended without an agreement on the drug’s price.
What Is Metachromatic Leukodystrophy?
Metachromatic leukodystrophy is a rare hereditary disorder that causes the buildup of fatty substances in cells, particularly in the brain, spinal cord, and peripheral nerves.
The deficiency of an enzyme responsible for breaking down lipids leads to progressive damage to the brain and nervous system. MLD presents in three forms: late infantile, juvenile, and adult, each with varying symptoms and prognoses.
While there is currently no cure for MLD, early identification and treatment may help manage some signs and symptoms, delaying the disorder’s progression. Bone marrow transplantation has shown promise in delaying progression in some infantile-onset cases.
The approval of Libmeldy in Ireland opens a new avenue for treatment, providing hope for those affected and their families.
The successful negotiation for access to Libmeldy underscores the importance of international collaboration in addressing critical healthcare challenges.
As Ireland prepares to implement the use of Libmeldy, there is renewed hope for families grappling with the devastating impact of MLD. The negotiated lower cost not only ensures accessibility but also sets a precedent for future discussions on making cutting-edge treatments available to those who need them most.
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