New research reveals significant financial burden of IBD

A new report has demonstrated that 60 per cent of people in Ireland living with Crohn’s disease and colitis experience financial difficulties, and almost half have avoided seeking necessary medical care due to the costs involved.

Even more concerning is that over a quarter of respondents reported delaying taking their medication to make it last longer due to the costs involved. The Uncovering the Hidden Cost of Crohn’s and Colitis report was launched by Crohn’s and Colitis Ireland (CCI) in partnership with Johnson and Johnson Ireland.

Crohn’s disease and colitis, the primary forms of inflammatory bowel disease (IBD), affect an estimated 40,000 people in Ireland, and commonly present in young adults between 15 and 35, with a notable second wave of diagnoses occurring between 50 and 60. The report provides insights into the challenges faced people living with IBD in Ireland, and identifies the key areas for improvement.

The report revealed that direct medical costs are the most significant financial challenge. People living with these uncurable conditions spend approximately €3,252 annually to manage their disease, which includes treatment and dietary needs. On average, this cohort spends a minimum of 33 hours a year accessing healthcare services, including travelling to and attending appointments.

Indirect costs also significantly impact patients’ overall financial stability.

• 62 per cent reported that taking time off work due to their condition has negatively affected their financial situation to some or a great extent.
• 82 per cent of respondents said that they missed work or lost wages as a result of their condition, while 86 per cent reported they have attended work when they have needed to take time off work.
• Costs associated with attending medical appointments also play a significant role in financial burden, with 85 per cent citing mileage and travel costs, 83 per cent citing parking fees, 62 per cent citing overnight stays for medical appointments, and 49 per cent citing childcare fees.

Amy Kelly, Chief Operations Officer at Crohn’s and Colitis Ireland, said:“These findings show the true extent of the challenges faced when diagnosed with Crohn’s disease and colitis, including the financial burden inflicted. However, it’s not just about medical bills, it’s about lost wages, dietary adjustments, and the constant struggle to access the care that people desperately need.

“We urge the Government to listen to the needs of the community and to improve access to care in Ireland. This includes including Crohn’s disease and colitis in the Chronic Disease Management Programme and expanding medical card eligibility, ensuring equitable access to essential medical care.”

Just under one-quarter of people living with IBD have qualified for the drugs payment scheme. A total of 39 per cent expressed difficulty in seeing a GP, while qualifying for a medical card or GP visit card is also reportedly difficult.

Less than one-third of people with Crohn’s disease and colitis have a medical card and only 13 per cent have qualified for a GP visit card. An overwhelming 98 per cent believe Crohn’s disease and colitis should automatically qualify individuals for additional support, underscoring the urgent need for policy reform.

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