THE FIRST AUTHORISED treatment for epidermolysis bullosa (EB) in Ireland has been made available.

EB, also known as butterfly skin, is caused by the absence of proteins between the skin layers, making the skin ultra fragile and easy to wound. It causes immense pain to the person with the condition and their skin can blister at the slightest touch.

There are around 300 people battling the incurable condition in Ireland.

The HSE has moved to make EB-specific gel treatment Filsuvez available. 

The gel – the first treatment of its kind in Ireland – promotes the healing of wounds associated with dystrophic and junctional EB and will be accessible to those prescribed it by their consultant.

It is applied to a sterile, non-adhesive wound dressing or directly to the skin and can reduce the frequency of bandage changes and ease the extreme pain of wounds caused by the condition.

The HSE has agreed to pay all or most of the cost of the drug, depending on what scheme patients qualify for.

“Filsuvez is a promising start, as it can offer temporary pain relief, and we hope it will mark the beginning for the treatment of EB in Ireland,” said Debra chief executive officer, Jimmy Fearon.

He said Ireland lags behind other European countries in introducing new drugs to the market.

“This has been a long journey and marks a transformative moment for people living with this rare skin condition.”

Last year, the National Centre for Pharmacoeconomics (NCPE) recommended that the gel, developed by pharma group Chiesi, be considered for what is known as reimbursement.

It will now be covered under the High Technology arrangement for patients aged six months or older with junctional or dystrophic EB.

Fearon says the charity hopes it is the beginning of EB-specific medicine reimbursement in this country.

The chief executive officer pointed to promising developments that have been made through the recent publication of a new framework agreement on the pricing and supply of medicines.

The availability of a treatment in Ireland marks a significant step towards improving the quality of life and easing the daily burden on patients and caregivers, the charity said.

“This decision represents hope, dignity and meaningful progress for EB patients and their families,” said Fearon.