Fazeels mum bandages his arms

We were delighted to receive confirmation today (Monday 8th July) that Filsuvez®, the topical gel treatment developed by Chiesi to promote the healing of partial thickness wounds associated with dystrophic (DEB) and junctional (JEB) EB, had been accepted for use by NHS Scotland for EB patients aged 6 months and older.

The Scottish Medicines Consortium (SMC) recognised that in phase III clinical trials, Filsuvez®, which is a birch bark extract gel, led to quicker wound healing than a control gel and the results also suggested potential improvements in the frequency of dressing changes, and the amount of affected skin.

The approval of Filsuvez® for DEB and JEB patients in Scotland follows on from a similar decision for England and Wales last September which led to the treatment being made available on prescription from early 2024.

Once again, we are very grateful to the DEBRA UK members who played a key role in the approval of this drug treatment for use in Scotland by providing patient testimony. Members of the DEBRA UK team also attended and provided supporting evidence in the committee meetings that led to the approval.

Commenting on the news, Tony Byrne, DEBRA UK CEO said:

People living with all types of EB desperately need treatments that can positively impact their symptoms and improve their overall quality of life, so it is hugely encouraging that the first treatment for patients with junctional and dystrophic EB was recommended by NICE in September last year and has now been recommended by the SMC, making the treatment available across the UK. On behalf of the EB community, I would like to thank Chiesi and the SMC for facilitating this approval, and all our members who supported the application. There is still much work to do to ensure approved treatments are available for all types of EB, but this is a promising first step. It provides hope today and will hopefully be a catalyst for future therapies.

Following this announcement, we expect Filsuvez® to be available on prescription for patients in Scotland following agreement between Chiesi and the Scottish Government on the data collection requirements, which is expected by September. For more information, please consult with your EB clinician.


For more information about Filsuvez®, please visit Filsuvez® FAQs.