First Authorised Epidermolysis Bullosa Treatment Made Available in Ireland in ‘Transformative Moment’ for Patients
The first authorised treatment for epidermolysis bullosa (EB) in Ireland has been made available here, marking a ‘transformative moment’ for those living with the agonising condition.
Debra, which supports 300 people living with the incurable skin condition in Ireland, described the HSE’s move to make Filsuvez available as an important step to ease the lives of those living with ‘Butterfly Skin’.
The gel – the first EB-specific treatment in Ireland – promotes the healing of wounds associated with dystrophic EB (DEB) and junctional EB (JEB) and will be available to those who are 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 EB.
The HSE has agreed to pay all or most of its cost of the drug, depending on what scheme patients qualify for.
The rare genetic skin condition is caused by an absence of proteins between skin layer, meaning skin becomes ultra fragile and blisters at the mildest touch.
Last year, the National Centre for Pharmacoeconomics (NCPE) recommended that Filsuvez, developed by 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.
“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 CEO, Jimmy Fearon.
“This has been a long journey and marks a transformative moment for people living with this rare skin condition.
“Debra is involved in cutting-edge research innovation that will one day dramatically improve the quality of life of people living with EB.
“We hope this is just the beginning of EB-specific medicine reimbursement.”
The CEO pointed to promising developments that have been made through the recent publication of a new framework agreement on the pricing and supply of medicines.
“This would see a more timely, transparent and patient-centred medicine access system in Ireland, something all people living with a rare disease, including EB, would greatly benefit from.”
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 has said.
“This decision represents hope, dignity and meaningful progress for EB patients and their families,” said Mr Fearon.
“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 rest of Europe.
“The HSE’s commitment to reimburse Filsuvez is a powerful acknowledgement of the urgent unmet need within this community.”