As members of the Beneluxa Initiative, Ireland, Belgium and the Netherlands, have successfully concluded joint pricing negotiations for Libmeldy, a treatment designed for Metachromatic Leukodystrophy (MLD), having arrived at a mutually agreeable pricing arrangement with the manufacturer Orchard Therapeutics.
MLD is a rare disease affecting an estimated 1 in 40,000 – 160,000 people. Its effects are devastating to those suffering with it and their families. Children with MLD will directly benefit from this agreement as Libmeldy will become available for reimbursement in the three countries.
The negotiations were carried out based on a joint Health Technology Assessment (HTA) procedure involving the three countries, showcasing the effectiveness of a unified approach in ensuring equitable access to innovative therapies. The outcome of successive negotiations with the manufacturer has shown that collaboration through the Beneluxa Initiative can support positive outcomes for countries and, in particular, for patient access to the latest medications. Access to Libmeldy through this multi-country agreement is a testament to the collaborative spirit driving the Beneluxa Initiative.
The Beneluxa Initiative remains committed to fostering collaboration among member countries, continually working towards solutions that enhance access to innovative therapies, contributing to patient well-being and healthcare system sustainability.
Stephen Donnelly T.D., the Irish Minister for Health:
‘Today’s announcement that Libmeldy is approved for reimbursement in our three countries provides hope for the families who can now access this life-changing medicine. It clearly demonstrates the importance of partnerships such as the Beneluxa Initiative, in delivering new innovative medicines for patients. The Initiative offers the opportunity to the pharmaceutical industry to deliver sustainable access to medicines across our health services.’
Frank Vandenbroucke, the Belgian Minister of Health and Social Affairs:
‘By working together across national borders, we can make vital medicines available to patients. To improve their lives, to save their lives. The patient should always come first, especially when a life is at stake, and then a government has to pull out all the stops for that. And that is why we need to cooperate much more in Europe. Beneluxa is a great example of cooperation so that we can avoid pharma producers pitting countries against each other.’
Conny Helder, the Dutch Minister of Health, Welfare and Sport:
‘This positive result is great news for MLD patients and their families. This collaboration between Belgium, Ireland and the Netherlands shows once more the benefit of our countries collaborating on price negotiations. Our countries will continue this successful collaboration to secure affordable access to medicines for patients in all our countries.’
Last update: 24 January 2024