Communiqué de presse

The Grand Duchy of Luxemburg Joins Belgium-Netherlands Initiative on Orphan Drugs

LUXEMBURG, 24/09/2015.- The Grand Duchy of Luxemburg joins Belgium and the Netherlands in their cooperation on orphan drugs. The three countries will jointly negotiate with pharmaceutical companies to moderate the price of orphan drugs. Today 24 September the Luxemburg Ministers of Health Lydia Mutsch and Social Security Romain Schneider have signed the declaration of intent.

Lydia Mutsch: “High drug prices have more and more influence on our policies in relation to accessibility to qualitative health care for our citizens, especially those suffering from rare diseases. I am convinced that this new cooperation with our Belgian and Dutch partners is an important step in a joint and constructive approach that will lead to pragmatic solutions.” Her colleague the Luxemburg Minister of Social Security Romain Schneider agrees: “The price of drugs weighs heavily on our budget. The Grand Duchy of Luxemburg will greatly benefit from the valuable experience and knowledge of Belgium and the Netherlands.”

A European Approach to Orphan Drugs

The Belgian Health Minister Maggie De Block is particularly satisfied and hopes that other Member States will join the initiative: “This means a step forward towards an even broader European approach on orphan drugs. Last year each country still acted alone. Today we are already three countries joining forces in order to offer the best care possible to our patients affected by orphan diseases.”

Belgium and the Netherlands discussed the joint approach for the first time in December 2014. On 20 April 2015 the Dutch Minister of Health Edith Schippers and her Belgian counterpart Maggie De Block signed a declaration of intent to jointly negotiate with the pharmaceutical sector on the reimbursement of orphan drugs.

The services of the ministers concerned are currently elaborating the practical details of the agreement so that a first pilot project can start.

The initiative goes well beyond jointly negotiating with the pharmaceutical industry. Eventually the three countries also want to exchange data, share registries and coordinate assessment methodologies. They will also examine together which innovative drugs will be commercialised in the coming years and how they can best prepare.

Lower Price

Orphan diseases are rare diseases which affect fewer than five in 100.000 people.

There are about 8000 orphan diseases for which only 150 drugs are currently available on the market. It is estimated that 30 million people in Europe suffer from one of these 8000 orphan diseases.

As this is - relatively speaking - a small amount of patients, companies cannot sell many orphan drug doses, which often leads to very high prices.

Until recently, each country made agreements separately with pharmaceutical companies. But together, they represent more patients and they can create the necessary conditions to bargain a lower price.

There are also advantages for the companies: they only have to submit one dossier and they directly have access to a larger patient population. Different pharmaceutical companies have already declared that they want to participate in the pilot project.