Filsuvez® approved as first drug treatment for DEB and JEB in the UK

Source: DEBRA UK

We are delighted to hear that Filsuvez®, the gel developed by Amryt Pharma as a treatment to promote the healing of partial thickness wounds associated with dystrophic EB (DEB) and junctional EB (JEB) has now been approved for use in the UK by the National Institute for Health Care and Excellence (NICE).

People living with all types of EB desperately need treatments that can positively impact their symptoms and improve their overall quality of life. Any treatment that has the potential to reduce the awful pain that people with EB endure, that being reducing the amount of time needed to do bandage changes or skin healing faster or blistering less is more than welcome.

This shows the importance of funding studies into new therapies for the disease, which affects around 300 people in Ireland. 

This follows on from last year’s approval for Filsuvez® to be used in Great Britain by the Medical Healthcare & Products Regulatory Agency (MHRA) and means that the UK will now be the first country in the world to be able to offer Filsuvez® as an approved drug treatment for patients with DEB and JEB.

Following the approval from NICE we can expect to see Filsuvez® available via prescription for UK DEB and JEB patients aged 6 months+ through the national NHS EB specialist centres before the end of 2023.

To find out more about Filsuvez®, please read the annuncement from NICE.

You can also take a look at our Filsuvez® FAQs.

Pushing for drug approvals 

Did you know it takes on average, over 12 years, for new drugs to move from the initial research stages to being available to patients? The final stage is reimbursement, which comes after the European Medicines Agency approves a drug – and Ireland is currently among the slowest countries in western Europe to get medicines into pharmacies after that point.

There are currently two new treatments for EB in the pipeline – FILSUVEZ® and VYJUVEK™ – and our team will push hard to get them to you as soon as possible.

We will be preparing to make a submission to the Irish reimbursement agency as it reviews these new treatments, and we are linking in with other patient organisations to learn about their experiences campaigning for access to new treatments in Ireland. We’ll make sure your voices are heard and decision makers know the impact these drugs could have.