Cutting-edge medicines hoped to transform treatment of incurable skin condition EB

The Journal

18-05-2025

THE INTRODUCTION OF two new cutting-edge medicines are hoped to transform the treatment of a rare incurable skin condition, a charity has said.
Debra, which supports 300 people living with epidermolysis bullosa (EB) in Ireland, said the entry of Filsuvez into the Irish market will ease the extreme pain endured by those with 'Butterfly Skin'.
The disease is caused by the absence of proteins between the skin layers, making the skin ultra fragile and easy to wound.
The charity insists that the expected introduction of the prescription medical gel before the end of the year could pave the way for gene therapy treatments, such as Vyjuvek.
Sinead Hickey, head of research at Debra, said: 'Where Filsuvez is a promising start, as it can offer temporary pain relief, we hope it will mark the beginning for the treatment of rare disease in Ireland.
'Vyjuvek has the potential to provide life-changing wound healing for people living with Dystrophic EB, it has already proven to be very effective in the US.'
Actor Colin Farrell with his friend Emma Fogarty, running in the Irish Life Dublin Marathon in Dublin in October, to raise money for people living with Epidermolysis Bullosa (EB), a rare genetic skin condition suffered by Ms Fogarty.
Alamy Stock Photo
Alamy Stock Photo
The topical gel delivers new COL7A1 genes directly to skin wounds to promote wound healing.
Ms Hickey said it does not have to be applied by a medical practitioner but can be done by a trained individual or family member.
'Unfortunately, Ireland is one of the slowest countries in Europe to move from recommendation to market and it could still be between seven and 12 years before we see Vyjuvek available to people here,' she said.
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Filsuvez, meanwhile, is applied to a sterile non-adhesive wound dressing or directly to the skin to ease the extreme pain of wounds caused by EB.
Debra made submissions to the NCPE (National Centre for Pharmacoeconomics), which has recommended the HSE provides the gel once agreement is reached on pricing.
A timeline has yet to be announced but Debra is optimistic a resolution will be found by the end of summer.
The charity's chief executive, Jimmy Fearon, said its entry into the Irish market is a step in the right direction.
'The treatment for EB hasn't advanced much over time, so new treatments always bring hope,' he said.
'This is not a cure but it may reduce the equivalent of a bandage change every two weeks, providing some pain alleviation.
'What this primarily represents is hope, breaking through the glass ceiling would hopefully mean that others will follow.
'Debra and other EB charities around the world support and invest in important research but, ultimately, it's the pharmaceutical companies and venture capitalists that run the breakthrough.'
Ireland is in the lowest quartile in Europe for introducing new drugs to the market, the chief executive said.
'It's an arduous process to bring a drug to market and this is a positive step,' added Mr Fearon.
'What we really need is faster progression from recommendation to market – time is of the essence for the 300 people in Ireland living in pain due to this condition.'