Access in Europe and Globally
Page last updated: 14th September 2020
Thank you to the SMA Europe member countries who responded to our request for information about the reality of access to treatment by adults in their country. Some provided other information about access in general. Responses included testimonials from adults who have SMA Type 3 and are being treated. We have a long way to go in the UK. Read More.
We have also asked Biogen to keep us updated on global access to nusinersen. They use 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