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The economic burden of caring for people with epidermolysis bullosa (EB) in Ireland exceeds €130,000 a year per patient, our new research reveals.
EB, suffered by around 300 people in this country, has an estimated cost to families and society of €130,021.
Previous research estimated an overall cost of €67,976 in the UK, €46,116 in Germany and €49,233 in Italy.
The huge outlay includes direct and indirect expenses of the extremely painful condition – such as wound management and costs borne by carers in looking after those with EB.
The University of Limerick study also shows Ireland is lagging behind other countries by failing to provide a funded bandage scheme for those battling the rare illness.
It coincides with EB Awareness Week and comes after no additional funding was allocated in Budget 2024 for EB patients for the second consecutive year.
“We have been cast aside again; my daughter matters, her life matters, people with EB matter, they exist and we’re not going away,” said Liz Collins, whose 19-year-old daughter Claudia lives with recessive dystrophic EB, leaving 80% of her body covered in open wounds.
The ‘Life with EB in Ireland’ report has prompted calls from the charity supporting families for the Government to introduce a €400,000 bandage scheme similar to that in Spain or Australia – where a monthly supply of dressings is delivered directly to a person’s home.
“Of the multitude of obstacles facing people with EB, access to specialised bandages is a significant issue,” said Joanna Joyce, Head of Advocacy with Debra, which commissioned the research.
“Bandages can cost thousands of euro each month and this disproportionately affects those without medical cards.”
The international review, conducted by UL’s Kemmy Business School, found that the quality of life of those with EB is “profoundly negative” and many adults face challenges around employment prospects, relationships, the pursuit of education and home life.
It compared the experience of people with EB in five countries (Ireland, UK, Spain, Australia and Austria) and was launched at a political briefing in Leinster House hosted by Deputy Chris Andrews and Deputy Pauline Tully.
EB is caused by the absence of essential proteins which bind skin layers together, creating breaking and excruciating blistering at the mildest touch.
In severe cases, it requires daily bandaging to prevent infection.
International studies show that depression has a prevalence of 63% among people with EB, compared to 10% for the general population – and in all five countries, mental health supports were found to be limited.
To address this, Debra is calling for funding for an adult clinical psychologist post (€80,000/annum) in St James’s Hospital in Dublin.
The report also found that in Ireland, challenges remain in the provision of home nursing care, such as the lack of a contingency plan when nursing staff are unavailable – and to address a lack of EB-trained nurses to replace those who move on.
Debra says a ring-fenced fund of €580,000 a year must be provided to ensure secure and flexible care packages.
The report was compiled by Dr Darragh Flannery and Brian Downes from the Department of Economics at the Kemmy Business School, along with Sarah Mullins and Joanna Joyce from Debra.
“The research highlights a number of important issues relating to life in Ireland for those with EB. For example, it draws attention to the high psychological burden placed on both those with EB and their carers and also provides a useful comparison of what has been achieved in other countries to help those with EB,” said Dr Flannery.
