Overview
Burosumab is an important treatment for people living with XLH. Until now, patients and carers in the UK have been using vials, which need to be drawn up manually before each injection.
This process can be difficult if you have dexterity issues and may lead to wastage or injury.
To make treatment easier and safer, burosumab will soon be available in a Pre-Filled Syringe (PFS) – ready to use straight from the packaging.
Burosumab Fact Sheet
Why is the rollout gradual
The move to pre-filled syringes needs to happen in a careful and responsible way.
- There is still existing stock of vial-based burosumab in the UK that must be used first to avoid waste.
- The pre-filled version has a different medicine barcode, which means hospitals and pharmacies must update their systems before it can be prescribed and dispensed.
- Individual training from an Alcura nurse is required.
Because of these factors, not everyone will receive pre-filled syringes straight away.
Phasing for PFS rollout
The rollout is being managed in stages, and certain patients will transition first. Typically, this includes:
- New adult patients or hospital sites who have not previously been trained to use the vials.
- Children under a specific age who require nurse home visits.
- Children who self-inject without a nurse present.
- Adults who self-inject independently.
When it’s your turn to move over to the PFS, you’ll be contacted and invited to a training session with an Alcura nurse, who will show you exactly how to use the new device safely.
Timeline
The rollout will take place gradually over the next year.
It is expected that by September/October 2026, around 70% of patients in the UK will be using the Pre-Filled Syringe.
Staying informed
We understand that many families are eager to move over to the pre-filled syringe, but please be assured that everyone who is eligible will be included in the rollout in due course.
Your hospital team and Alcura will contact you when it’s your turn to switch.
In the meantime, continue using you current burosumab supply until contacted. This helps ensure that existing stock is used and that the transition is managed smoothly for everyone.
If you have any concerns about your treatment or have not heard from your hospital team when you were expecting to, please contact your hospital XLH team for advice.