Debra Ireland, the national charity supporting those living with epidermolysis bullosa (EB) has said it is disappointed that for the second year in a row, the Government has failed to prioritise funding for EB care.
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.”
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.
Alejandra Livschitz, Head of Communication at Debra Ireland, previously told Gript that funding is crucial, with the organisation relying on donations to provide crucial supports to the roughly 300 people living with EB in Ireland. Funding from the government would go towards mental health support, home nursing care and outreach care for those with EB in Ireland.
The organisation was seeking a tiny percentage of the current €23 billion health budget. Highlighting the mental and physical trauma, and lifelong pain associated with the condition, a spokesperson for Debra said that those with the condition can go under the government’s radar. Debra had told the government that for the cost of two coffees per person living with EB in Ireland per day, a real difference can be made in the lives of those with the genetic condition.
However, this becomes the second year that the government has failed to give any funding to the charity, which is the main source of support for sufferers.
“The Budget was announced earlier this week, and we were listening closely to see whether an investment in EB care was included, but for the second year in a row the Government has failed to prioritise funding for EB care,” Joanna Joyce, Head of Advocacy and Policy at Debra said.
“While there were measures in the Budget that may relieve some of the immediate pressures on families, such as the €400 cost of living lump sum payment for people getting the Carer’s Support Grant and Disability Allowance, and a modest increase in most social welfare payments, this Budget does not go far enough in addressing the needs of those living with or caring for someone with EB in Ireland.”
In reaction to the Budget, the charity said that while the news was “extremely disappointing,” throughout the campaign for budget funding, it had continued to build more and more political support for investment in EB.
“Sinn Féin and the Social Democrats included investment in EB in their alternative budgets for 2024 and we have now been invited by Deputy Chris Andrews to make a presentation to TDs and Senators in Leinster House later this month to mark EB Awareness Week,” ms Joyce said.
Debra said they will now wait for the Health Service Executive to publish its National Service Plan later this year.
The plan will set out in detail where the budget allocated for health and social care will be spent, but Debra said that at this stage they are not hopeful that EB care will be prioritised. “As we wait to find out, we will continue to meet with decision-makers to push for the investment we know is so badly needed,” Ms Joyce continued.
Debra told supporters that the progress which has been made in creating awareness around the extremely rare and painful condition “couldn’t have been done” without supporters.
It thanked everyone who supported their campaign this year, adding: “Over 1,800 of you sent messages to the Minister for Health, Stephen Donnelly, resulting in our meeting request being forwarded to the Minister of State for Disability, Anne Rabbitte. We will continue to push for this meeting with Minister Rabbitte to discuss the issues affecting people living with EB in Ireland.”
“Together, we are continuing to shine a spotlight on the desperate struggle many people living with EB face to get basic care and support, and to call loudly and clearly for investment to improve it.”
Budget 2024, announced on Tuesday, saw Minister McGrath announce a total spending package of some €14 billion – with core spending and tax reliefs set to cost of €6.4 billion, and €2.7 billion for once-off measures, and €4.75 billion for non-core expenditure.
Mortgage holders were granted a once-off measure in recognition of the difficulties homeowners face because of hikes in interest rates. This relief will only apply to principal private residences – not rental properties – with an outstanding mortgage balance of between €80,000 and €500,000 on December 31st, 2022.
Other notable measures include an increase in the minimum wage to €12.70 in January. Additionally, the rental tax credit will be increased from €500 to €750 – and parents who pay for student children in full-time accommodation will be able to claim the credit, which will be backdated to allow for claims in 2022 and 2023.
As reported by Gript, the government said that Budget 2024 is providing €4.5 billion to respond to exceptional challenges that still face the country, “such as continuing our humanitarian response to families fleeing the invasion of Ukraine and some COVID-19 related spending needs”.
€2.5 billion of that total is earmarked for support to refugees from Ukraine such as accommodation, welfare payments and education.
€1.3 billion is “to continue to respond to Covid-19”, while €0.7 billion is for “other responsive provisions”.
The breakdown of funding provided shows €25.2 billion is budgeted for social protection, while €22.5 billion is earmarked for health.