Rare skin condition patients gain access to newly approved drug

By Claudia Savage, Press Association

The first authorised treatment for a painful and incurable skin condition has been made available in Ireland, in what has been described as a ‘transformative moment’.

Debra, the national charity and patient support organisation for people living with epidermolysis bullosa (EB), described the HSE’s move to make Filsuvez available as an important step to ease the lives of 300 people battling the illness, also known as butterfly skin.

EB is caused by an absence of proteins between skin layers, meaning skin becomes ultra fragile and blisters at the mildest touch.

The new gel treatment, called Filsuvez, 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 pain of wounds.

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

Debra, chief executive, Jimmy Fearon, said introducing 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”.

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

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.

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

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

“For too long, people living with EB have had no approved treatment options.

“Ireland is in the lowest quartile in Europe for introducing new drugs to the market.

“The average timeline from European Medicines Agency decision to reimbursement in this country is 1,024 days, far beyond the 611-day average in the rest of Europe.

“The HSE’s commitment to reimburse Filsuvez is a powerful acknowledgement of the urgent unmet need within this community.”