Eileen Lynch (Fine Gael)

I thank the Minister of State for being with us today. I raise this Commencement matter to ask why inflammatory bowel disease, IBD, which includes Crohn's and colitis, which are the two most common forms of IBD, remains excluded from the long-term illness scheme, despite being a lifelong, incurable, medically managed condition that affects more than 40,000 people in Ireland. According to Crohn's and Colitis Ireland's 2025 report, Uncovering the Hidden Costs of Crohn's and Colitis, the financial and personal toll of living with IBD is staggering. The average person spends €3,252 per year out of pocket on IBD-related care, including medication, dietary needs, travel and consultation. A total of 60% of people have experienced financial hardship in the past year due these costs, 47% have avoided seeking medical care and 26% have delayed taking medication to make it last longer, all because of cost. It is incredible to read these statistics that show, in a country as developed as ours, people are avoiding seeking medical care because they cannot afford it.

The burden goes beyond treatment costs. It can affect employment. A total of 82% of working people with IBD report financial hardship due to missed work or lost wages. A total of 58% have had to take five or more days off work each year because of their condition. A total of 67% say their IBD has limited their career or promotion opportunities, and many are forced to attend work when unwell. A total of 86% say they have worked through illness because they could not afford to take time off. These people are contributing to our economy and paying taxes while managing serious illness, often in silence and without support. Yet, when they need the State to step in, they are left behind.

The means-tested system for medical and GP-visit cards is simply not fit for purpose for those suffering with IBD. This is a condition that can flare and recede. Someone may appear well on paper one week but be hospitalised the next. The current assessment methods do not reflect the unpredictable and cynical nature of this illness. People with IBD have contributed to society. They have worked while unwell. They have switched to cheaper, generic medication to save the State money, but when they get sick the support is not available. People living with IBD are not asking for special treatment. They are asking for equal treatment. The reality is that, because their illness is not one of the 16 conditions listed in the long-term illness legislation from 1970, which has not been amended since, they are expected to pay out of pocket, while others, rightly, receive support. That is not equity. It is not fair. It is outdated.

I acknowledge there are other supports, but this is not a standard disease where people are unable to work all the time. We need to acknowledge the crucial difference between it and some of the long-term illnesses which are already acknowledged in legislation. I ask the Minister of State to acknowledge that this exclusion is a policy decision, commit to a formal review of the long-term illness scheme to look at including IBD in it, to include IBD in the chronic disease management programme and to look at reforming the medical and GP-visit card system so that it reflects that disease burden and clinical need are a factor, not just a person's income.