Eileen Lynch (Fine Gael)
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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.

Christopher O'Sullivan (Cork South-West, Fianna Fail)
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I welcome the national school from County Cork. It is my county. I welcome them to Seanad Éireann.

I thank Senator Lynch for raising this important issue. In her contribution she covered it all, including that the long-term illness scheme is dated and has not been updated in a long time. In terms of her hope that the condition would be covered, the best opportunity would be a review. I am answering this on behalf of the Minister for Health. However, from listening to what she said, I think that is the way forward. I will outline some of the supports that are available, which the Senator is already well aware of. She knows all this already.

The long-term illness, LTI, scheme was established under section 59 of the Health Act 1970. Regulations were made in 1971, 1973 and 1975. They prescribed 16 conditions to be covered by the scheme, but there have been no additions or deletions to the list since that time. That is a long time and there has been such change to people's health, diets, quality of life and so on. It seems a bit rich and it is high time for a review. That is just me speaking. I will outline the position of the Department of Health. Under the LTI scheme, patients receive drugs, medicines and medical and surgical appliances directly related to the treatment of their illness free of charge.

While there are no plans to extend the scope of the scheme, it is important to recognise that the LTI scheme exists within a wider eligibility framework. People who cannot, without undue hardship, arrange for the provision of medical services for themselves and their dependants may be eligible for a medical card. Eligibility for a medical card is determined by the HSE, primarily based on an assessment of means. The HSE may exercise discretion and grant a medical card, even though an applicant exceeds the income guidelines, where he or she faces difficult financial circumstances, such as extra costs arising from illness, so that is a potential avenue. The HSE affords applicants the opportunity to furnish supporting documentation to determine whether undue hardship exists and fully takes account of all relevant circumstances that may benefit them in assessment, including medical evidence of costs and certain expenses. The issue of providing a patient with medical card eligibility on the basis of illness or disability was previously examined in 2014 by the HSE expert panel on medical need and medical card eligibility. The group concluded it was not feasible, desirable nor ethically justifiable to list medical conditions in priority order for medical card eligibility. In following the expert group’s advice, a person's means remains the main qualifier for a medical card. However, over the past several years, there has been a significant focus on improving access to, and the affordability of, healthcare services. This has been advanced through the substantial policy, legislation and investment to deliver expanded eligibility and services in line with Sláintecare. Major expansions in eligibility include the removal of public inpatient charges in public hospitals, for children in 2022 and for adults in 2023, and the provision of free GP visit cards to include children aged six and seven and those earning no more than the median income. These changes impact up to 500,000 people. The reduction in the drugs payment scheme, DPS, threshold, which caps monthly expenditure for approved prescribed medicines, was reduced to €80 euro per month in March 2022. Other measures have been introduced to try to increase accessibility and affordability.

It comes back to the main point the Senator made. The long-term illness scheme was developed a long time ago. The prescribed illnesses were decided on decades ago. I appreciate that the prepared response states there is no plan to review that. However, in my view, that would be the prudent thing to do. It is all well and good for me to outline the other supports available, but the Senator is talking about a specific condition that seems to me to merit inclusion. That, of course, is up to the Minister for Health.

Shane Curley (Fianna Fail)
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Before I allow Senator Lynch back in, I welcome the group from Dromahane National School from County Cork. Senator Lynch tells me the school recently got a new school building. I was a teacher myself in the past. I took up a job and, six months later, moved from an old school building to a new one. I know the excitement involved in that. Congratulations to you all.

Eileen Lynch (Fine Gael)
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I welcome the group from Dromahane National School today. I am delighted to have them here.

I thank Minister of State for his reply. I acknowledge and completely accept this is not within his Department's remit, so I again thank him for taking this Commencement matter today. He referred to section 59(3) of the Health Act, regarding long-term illness, but what that provision actually states - again, while the Act has been amended, it still refers to the health board - is that the "health board may make arrangements for the supply without charge of drugs, medicine or medical surgical appliances to persons suffering from a prescribed disease or disability of a permanent or long-term nature.” That provision does not specify conditions as to the inclusion of other illnesses. It says they may be included. To my mind, there is no legislative barrier to improving, increasing or reviewing the long-term illness scheme. It seems the provision actually allows for further inclusion by use of the word “may”. It is simply political will that has prevented this.

I note the other measures outlined in the Minister of State’s response in terms of things that are available but, as I outlined in my initial statement, IBD is a disease that can flare up. A patient might be absolutely perfect today and incapacitated tomorrow. He or she may be unable to work for a week. While he or she may be working, potentially earning more than the means-test allowance for the medical card, that does not mean he or she can continue to work. As I said, when we see the statistics from Crohn's & Colitis Ireland, there are so many people suffering from Crohn's or colitis or another form of IBD who are afraid to take time off work and are saving their medication because they cannot afford to buy more. It is not fair to say a person can go for medical card. They can, but these people are working and contributing, and while they may be working today and be in perfectly good health, they could absolutely be incapacitated tomorrow, which could lead to them taking time off work. That difference has to be recognised.

Christopher O'Sullivan (Cork South-West, Fianna Fail)
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I thank Senator Lynch. She is right; there is no legislative obstacle to expanding the scope of the long-term illness scheme. There is probably no policy obstacle either. The prepared response says there are no plans to extend it, and I hope that is just for the moment. The Senator is right that with a bit of political will and pushing and presenting the case for inclusion of conditions like IBD in the way the Senator has, which makes sense given how debilitating it is, how costly it can be and the impact it has on people's lives, surely it is time for review. Does that potentially open it up for a whole range of other diseases to be included? I do not know, but it is worth pursuing further. At the moment there are no plans but, as we know, in politics things can change, and if we keep the pressure on, it is worth pursuing.

We have done great things in terms of increasing access to medical cards and GP visit cards. Sláintecare is slowly edging towards achieving a lot of its goals. Expanding the scheme does seem it would be worth pursuing, if nothing else because the range was defined back in the seventies. I appreciate Senator Lynch raising the matter today.