Access in Europe and Globally
Latest updates on global access to nusinersen
We have asked Biogen to keep us updated with this latest information and will add further updates on this page. Biogen uses the terms ‘achieved / negotiating reimbursement’ to show what stage their negotiations to agree a funding contract with a country have reached:
When a contract is agreed, this impacts on the availability of the country’s Expanded Access Programme for SMA Type 1. As some families from other countries have been accessing these programmes this impacts on them. This next update advises about the closure of the Belgium EAP and what families need to do:
We will continue to advocate for access via the Patient Representatives who will be taking part in NICE’s first committee meeting next week and via Scottish MPs and as soon as there is any opportunity to do so via the Scottish Medicines Consortium.
When you are writing to or talking to MPs you may want to point out how far behind the UK is compared to the rest of the world.
If you are considering travelling or moving to another country to try to access nusinersen, please talk to your current medical team. You may also want to contact Biogen’s representatives at Patientcenter@biogen.com