12 July 2018 - Positive outcome of joint reimbursement negotiations on Spinraza
Beneluxa Initiative partners Belgium and the Netherlands successfully negotiated the reimbursement of Spinraza
Belgium and the Netherlands have reached an agreement on the pricing of Spinraza, a drug for Spinal Muscular Atrophy (SMA). Spinraza will be reimbursed for specific groups of patients in both countries.
The aim of the Beneluxa Initiative is to enhance the access of patients to high quality and affordable treatment. The agreement on Spinraza is the first positive outcome of a joint negotiation of the Beneluxa Initiative. As a result of negotiations, which started in February of this year, Spinraza will be reimbursed in both countries under similar conditions. The joint process consisted of a joint Health Technology Assessment, followed by a joint price negotiation.
Although previous pilots have proven that joint negotiations can be successful, this particular case is a great achievement that benefits patients in both countries.
Ireland has recently joined the Beneluxa Initiave too. With several pilots ongoing, the aim is to expand future negotiations with other Beneluxa partners and to enhance efficiency by streamlining reimbursement processes in different countries.
Bruno Bruins: ‘First and foremost, the positive outcome is wonderful news for the young SMA patients and their families, both in the Netherlands and Belgium. It is also a very clear and promising example of the benefits of working together on price negotiations and pharmaceutical policy. Biogen’s willingness to engage in a joint process and discover the benefits of gaining swift access in several markets at the same time is a positive development. Therefore I hope more companies will follow this example.’
Maggie de Block: ‘I am delighted to be able to make this orphan drug available to our SMA patients, barely one year after it received a marketing authorization. There was no treatment at all for these patients, but that is now changing. This means a giant step forward for these people and their families. At the same time, I am very proud of how we have tackled this. Today, we demonstrate that countries can jointly negotiate the reimbursement of orphan drugs to the benefit of their patients. This is a very important signal for everyone involved in Beneluxa and an extra motivation to further develop this international cooperation.’
Last update: 12 July 2018
24 May 2018 - Steering Commitee Meeting
On the 24th of May 2018, the Steering Committee of the Beneluxa Initiative met in Brussels. On the 25th of May 2018, the Beneluxa General Assembly took place. A representative of Ireland, at the time in process of joining the Initiative, participated in the Steering Committee meeting.
The following topics were discussed:
1. updates on the on the Initiative’s four Domain Task Forces:
2. Alternative business models to develop medicines (such as the Fair Medicines Initiative)
3. Austria’s planned activities related to pharmaceutical policy under the upcoming EU Presidency
4. Developments concerning the reimbursement of pharmaceuticals in Europe
5. The Beneluxa Initiative has opened a twitter account to announce news and new content on the website. The Beneluxa Initiative twitter can be found at https://twitter.com/BeneluxaCoop.
18 January 2018 - Steering Commitee Meeting
The Steering Committee of the Beneluxa initiative met in Luxembourg on 18 January 2018.
Experiences with joint HTA reports and joint negotiations were assessed, and the planned activities for 2018 in the areas of HTA and pricing and reimbursement were discussed. Topics included a discussion of moving ahead with collaboration in the areas of Horizon Scanning and patient registries.
28 November 2017 - Orientation Meeting on Patient Registries
Policy makers and national patient registry experts from Beneluxa countries, Hungary and the United Kingdom met in Vienna on 28 November 2017 to explore a possible collaboration in the field of patient registries in order to increase efficiency, and enhance evidence generation and information sharing.
The meeting aimed to identify the challenges and prerequisites for collaboration in the field of patient registries, and ways to move forward. As a supportive exercise, results of a preliminary mapping of patient registries in the member countries of the Beneluxa initiative were presented. As different types of registries exist, key learnings included the need for a clear definition of patient registries and scope in order to determine which type of registry would be appropriate for a potential pilot in the near future. Furthermore, technical and political challenges of a joint registry (e.g. interoperability of datasets, legal framework/collaboration agreements, as well as how necessary information can be collected) were identified.
The Beneluxa partners will further explore a collaboration in the field of patient registries.
11 November 2017
Information on the first results of actual joint HTA procedures are available here.
6 September 2017 - Website of the Beneluxa collaboration launched
The competent authorities of Belgium, the Netherlands, Luxembourg, and Austria have committed to cooperate in order to contribute towards the sustainable access to medicines in their countries.
Further information on the Beneluxa cooperation can be found on this website, which was launched on September 6, 2017.
27 June 2017 - Meeting on Joint Horizon Scanning
A meeting was organised in Brussels on 27 June 2017 to explore options for potential collaboration between authorities on Horizon Scanning - even beyond the Beneluxa countries.