Ensuring access to treatments and medicines

People living with EB face daily challenges managing painful wounds, preventing infection, and protecting fragile skin — but in Ireland, access to the bandages, dressings and EB-specific treatments and medicines they need isn’t guaranteed.

At Debra, we’re working to change that.

What’s the issue?

There’s no national bandage scheme in Ireland

In many other countries, people with EB can access the dressings they need free of charge. In Ireland, only those with the most severe forms of EB are typically covered — usually through disability or carer’s allowance schemes.

For others living with EB, this means paying out-of-pocket for essential medical supplies like emollients, topical antibiotics and specialist dressings — often costing hundreds of euros per month. This isn’t just a financial burden. Without proper wound care, people risk infection, increased pain and a serious drop in quality of life.

Access to EB-specific medicines is too slow

In recent years, two new EB treatments have been approved by the European Medicines Agency — but delays in reimbursement mean that people in Ireland still can’t access them.

Filsuvez: A topical gel designed to support wound healing. It’s EMA-approved for use in people over six months of age with DEB or JEB. It has been approved in May 2026, after years of advocacy and campaigning.
Vyjuvek: A topical gene therapy approved by the EMA in 2025 for people with DEB. This treatment has the potential to help the skin restore collagen and accelerate healing. It’s now starting the reimbursement process in Ireland — but without intervention, delays are likely.

Approved treatments for EB in Ireland

Filsuvez, now available in Ireland for those who are eligible, is a treatment that can support wound healing. It won’t change everything. It won’t be right for everyone. But for some, it may ease part of the daily burden — fewer bandage changes, some relief from pain.

If you are a member of the EB community and have any questions about Filsuvez — including whether it may be appropriate for you or how it might fit into your care — your clinical team and wider medical community are best placed to provide personalised advice.

They understand your individual circumstances and can guide you accordingly. That said, please know that we are always here to support you, and if you need help navigating information or simply want to talk things through, you can reach out to us at any time.

What are we doing?

We’re advocating for real change — and we won’t stop until everyone with EB in Ireland has fair and timely access to the care and treatment they need.

We’re calling for a national bandage scheme, so that all people with EB — regardless of severity — can access dressing materials without cost being a barrier.

We’ve submitted detailed proposals in multiple pre-budget submissions, and we continue to engage directly with the Department of Health and the HSE to move this forward.

We’ve also made formal submissions to the National Centre for Pharmacoeconomics (NCPE) in support of the reimbursement of Filsuvez, and we’re closely monitoring the process for Vyjuvek.

We’re working with key people across the system to expedite the drug reimbursement process for EMA-approved EB treatments — because families in Ireland shouldn’t have to wait any longer.

Wound care and access to new treatments are not luxuries — they’re essential to improving the daily lives of people with EB.

Until change happens, we will continue to stand with the EB community and advocate for equity in care, access, and support.

Latest news

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European Commission approves Amryt Pharma’s Filsuvez for use in the EU