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The economic burden of caring for people with a devastating skin condition in Ireland exceeds €130,000 a year per patient, new research reveals.
Extremely painful skin condition epidermolysis bullosa (EB), suffered by around 300 people here, has an estimated cost to families and society of €130,021.
Previous research estimated an overall cost of €67,976/person in the UK, €46,116 in Germany and €49,233 in Italy.
The huge outlay includes a wide range of expenses such as wound management, GP visits, hospitalisation and early retirement.
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 this 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’s body is 80% covered in open wounds.
EB is caused by the absence of essential proteins which bind skin layers together, causing breaking and excruciating blistering at the slightest touch.
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.
“They can cost thousands of euro each month and this disproportionately affects those without medical cards.”
The quality of life for those with the illness, the report found, is “profoundly negative” and many adults face challenges around employment prospects, relationships, the pursuit of education and home life.
The study compared the experience of people with EB in five countries (Ireland, UK, Spain, Australia and Austria) and was launched today (Oct 24) at a political briefing in Leinster House hosted by TDs Chris Andrews and Pauline Tully.
Depression has a prevalence of 63% among people with EB, compared to 10% in the general population – and in all five countries, mental health supports were limited.
Debra wants 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 flexible care packages.
“The research draws attention to the high psychological burden placed on those with EB and their carers and also provides a useful comparison of what has been achieved in other countries,” said Dr Darragh Flannery, one of the authors from the Department of Economics at UL’s Kemmy Business School.