Fury over hundreds suffering with extremely painful rare condition ‘cast aside’ as shocking health costs revealed
THE economic burden of caring for people with a devastating skin condition in Ireland exceeds €130,000 a year per patient, new research reveals today.
Extremely painful skin condition epidermolysis bullosa or 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 per 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.
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Liz Collins, whose 19-year-old daughter Claudia’s body is 80 per cent covered in open wounds, said: “We have been cast aside again; my daughter matters, her life matters, people with EB matter, they exist and we’re not going away.”
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.
Joanna Joyce, Head of Advocacy with Debra, which commissioned the research, said: “Of the multitude of obstacles facing people with EB, access to specialised bandages is a significant issue.
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“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 at a political briefing in Leinster House hosted by Sinn Fein TDs Chris Andrews and Pauline Tully.
Depression has a prevalence of 63 per cent among people with EB, compared to ten per cent in the general population - and in all five countries, mental health supports were limited.
Debra wants funding for an adult clinical psychologist post at €80,000 per annum in St James’ Hospital in Dublin.
RING-FENCED FUND NEEDED
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.
Dr Darragh Flannery, one of the authors from the Department of Economics at UL’s Kemmy Business School, said: “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."
Emma Fogarty from Abbeyleix in Co Laois, is one of the estimated 300 people in Ireland living with EB.
Speaking previously about the condition, she said: “The pain is excruciating. But it has to be done — there’s no way around it.
“Living with EB means every day is a challenge.”
She added: “It’s cruel what parents have to go through, what kids go through."