The first ever topical issue on Epidermolysis bullosa (EB) has been raised in the Dáil, highlighting the mental health challenges the rare and chronic skin condition can bring.
The Dáil also heard that Ireland is “lagging behind” other countries by failing to provide a dedicated EB bandage scheme, as the Minister for Health was asked by Deputy Pauline Tully if additional funding would be provided to meet the needs of those living with EB in Ireland.
In October, Debra Ireland, the national charity supporting those with EB, expressed disappointment over the failure, for the second year in a row, to allocate funding for the condition in the annual Budget.
Debra had asked for €810,000 to be allocated in Budget 2024 to support those with the extremely painful condition. Debra’s ‘Small ask, Big impact’ Pre-Budget Submission makes four requests of the government, including a care coordinator with the HSE to connect Ireland’s EB community to key supports.
The charity has welcomed the raising of the issue in the Dáil, saying it signalled an increase in awareness around the condition. It comes after an international review of quality-of-life for those with the condition, and a comparison of access to healthcare resources and government supports, conducted by Debra Ireland, and the University of Limerick, highlighted the ‘staggering’ annual cost to families and society of EB of €130,000 per person with EB.
Our 'Life with EB in Ireland' report in collaboration with @UL @darraghflanner1 calculated that epidermolysis bullosa has an estimated cost to families and society of €130,021 a year.
Thank you to @chrisandrews64 and @PaulineTullyTD @sinnfeinireland for hosting us in Leinster… pic.twitter.com/Y19pSdsqOz— Debra – The Butterfly Skin Charity (@debraireland) October 24, 2023
The organisation says the report shows the urgent need for dedicated EB healthcare funding in Ireland,
Watch 🎥The first ever topical issue on EB was raised in the Dáil yesterday by @PaulineTullyTD. Deputy Tully described the reality of EB shared by Debra ambassadors @Elizabe08068244 and Emma Fogarty, and spoke about the need for additional home nursing care, outreach care and… pic.twitter.com/0TjMPDoeKy
— Debra – The Butterfly Skin Charity (@debraireland) November 16, 2023
The condition, which is also known as ‘Butterfly skin’, occurs when there is an absence of the proteins needed to bind different layers of the skin together – creating excruciating blistering and tearing with the slightest touch or movement. Debra, in its pre-budget submission, called for support in the 2024 budget, sending a message to the government that “those with butterfly skin shouldn’t have to fight for basic care.”
Speaking in the Dáil on Thursday, Deputy Pauline Tully referenced a recent study, conducted by Debra Ireland and the University of Limerick (UL) which reviewed the impact of EB on the quality of life, and examined access to services and supports across five countries including Ireland.
Deputy Tully said that while people with EB had access to care through specialist clinics in Children’s Health Ireland, CHI, at St James’s and Crumlin Hospital, and through community health teams, many families “continue to face significant challenges” in managing the condition.
“In particular, the report from UL and Debra Ireland found that Ireland is lagging behind other countries by failing to provide a dedicated EB bandage scheme,” the TD said.
She referenced the report also identifying challenges in the provision of home nursing care for people with EB – including the lack of contingency plans where nursing staff are unavailable, and a lack of nurses trained in treating EB.
“The report highlights the significant impact of EB on mental health and shows that people caring for a loved one with EB have a lower quality of life than the general population. It also found that the economic burden of EB is approximately €130,000 per year per person in direct and indirect costs,” she told the Dáil.
She referenced the group’s pre-budget submission, and stated that, in relation to nursing care, Debra Ireland was seeking ring-fenced funding to enable resources to be available where a person lives.
“A ring-fenced fund would ensure that people with severe EB can access the essential and complex home nursing care they need, as those needs change over time. In addition, Debra Ireland estimates that €400,000 in annual funding would be required to run an EB-specific bandaging and dressing materials scheme in Ireland, similar to the one that exists in Australia.
“Given the significant impact of this disease, will the Minister for Health commit to providing the additional funding required to meet the needs of people living with EB in Ireland?” Deputy Tully asked.
In response, Deputy Mary Butler said that there was cross-party support for helping those living with EB, and pledged that the government is “fully committed to doing everything possible to assist people living with a rare disease.”
She referred to “significant progress” achieved under the National Rare Disease Plan 2014-2018, and the plan to develop a revised national rare disease plan which would meet the needs of patients and families.
As Minister for Mental Health, Deputy Butler was asked about the mental health implications of the condition for the roughly 300 people in Ireland living with EB.
“In a survey conducted by Debra Ireland in 2019, people living with or caring for someone with EB spoke about experiencing feelings of isolation, despair, loneliness, an inability to cope and helplessness when a child is in pain. The pain is excruciating,” Deputy Tully said.
“There is bound to be an impact on mental health,” she continued. “A number of international studies have also examined the psychological impact of EB. One such study found prevalence rates of 63.6% for depression, 45.5% for anxiety and a lower quality of life generally for all of those affected by EB.”
She said a grant for counselling and therapy, provided by Debra Ireland, “to fill in the gaps in the context of what is not being provided by mental health services” saw demand increase by 73 per cent between 2021 and 2022.
“It is looking for an investment of €80,000 per annum towards a clinical psychologist based at St. James’s Hospital,” she told the Minister. “That would have such an impact because there would be a person dedicated to people with EB. I wonder if that is something that could be considered, when it is decided where budget allocations are going?”
She also raised the issue of, while an EB outreach nurse has been appointed to Children’s Health Ireland at Crumlin, none has been appointed to St. James’s Hospital for those who move into adulthood.
“That would make such a difference because an EB outreach nurse can deliver early intervention, for example, in the case of problem wounds, and therefore reduce the need for hospital visits to access treatment for wounds and possible infections. Again, even an investment in an EB outreach nurse would make such a difference to the people living with the disease.
“I have already talked about the bandage scheme. Some of the people say that sometimes when they go to collect their bandages, they are the wrong size or they are not available, and they have to travel then to one of the hospitals to get them. These are small things that could make such a difference to the lives of people with EB and their families.”
Minister Butler, in response, said she would bring the Deputy’s concerns back to the Minister, and said she would also look at the issues she has raised herself.
Alejandra Livschitz, Head of Communication at Debra Ireland, recently told Gript that funding is crucial to support those living with the condition, with the organisation relying on donations to provide crucial supports, with minimal funding allocated by the government.
“We get some support from the government but most of our income comes from donors and supporters. We understand there are many important priorities in health, but people with rare diseases such as EB cannot be forgotten about. It’s really difficult to comprehend the lack of funding for EB because it really is a small ask,” she told Gript.
At the end of October, Debra Ireland joined some of those affected by EB at Leinster House to share the organisation’s ‘Life with EB in Ireland’ report with politicians. 19 TDs and three senators attended or were represented at the briefing.
Our 'Life with EB in Ireland' report highlights the staggering annual cost to families and society of EB of €130,000 per person with EB. https://t.co/kO79RCm88R
The launch of our report yesterday at Leinster House saw 19 TDs and 3 Senators attend / represented including… pic.twitter.com/PRSbNciFci
— Debra – The Butterfly Skin Charity (@debraireland) October 25, 2023