Maria Byrne (Fine Gael)
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I thank the Minister of State, Deputy Butler, for coming to the House to discuss this important issue. In recent weeks I have met an adult and a 18-year-old girl who suffer from Crohn's disease. The 18-year-old girl has been very debilitated over recent years. She spends an awful lot of time in hospital. She has had to drop out of school because of the level of her illness. Crohn's disease and colitis are very debilitating. It is very difficult to get a proper diagnosis because they are hidden diseases in that people do not know what the symptoms are or what is happening. The diseases are a breakdown in the immune system and people can suffer very badly with them. Some people have a lesser degree of it but many people suffer for quite a while. When they have energy, they are great, and suddenly the immune system goes down and they can be very sick with it.

When I met this 18-year-old recently, which was not my first meeting her, I saw how sick she has been, especially in recent years. She should be enjoying her life, going to school and playing sport, yet she could be in hospital for six or eight weeks at a time.

These conditions should be included on the long-term illness scheme because inflammatory bowel disease is not of the person's doing. It is something that, unfortunately, people end up being diagnosed with. I will not use the phrase "no future" but people spend a lot of time in bed and sick and it should be included in the scheme because of the cost of the medicines. Even in the short term, perhaps it could be included in the drug payment scheme and these people could qualify automatically for a medical card. Our long-term objective should be to have it in the long-term illness scheme.

Mary Butler (Waterford, Fianna Fail)
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I thank Senator Byrne for raising this very important issue. The long-term illness scheme was established under section 59(3) of the Health Act 1970, as amended. Regulations were made in 1971, 1973 and 1975 prescribing 16 conditions covered by the scheme. These include acute leukaemia, mental handicap - which is not wording we use any more, I have to say, when I think about it- cerebral palsy, mental illness in a person under 16, cystic fibrosis, multiple sclerosis, diabetes insipidus, muscular dystrophies, diabetes mellitus, Parkinsonism, epilepsy, haemophilia, spina bifida, hydrocephalus and conditions arising from the use of Thalidomide. There is no mention of Crohn's disease or any form of inflammatory bowel disease. I take on board what Senator Byrne said about that young person. When people have bowel conditions, it is very debilitating. That person will probably spend a lot of time in the comfort of her own house because of the condition.

As we know, under the 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 at present, it is important to reflect that it exists in a wider eligibility framework. The Government has put a significant focus on improving access to, and the affordability of, healthcare services, advancing substantial policy, legislation and investment to deliver expanded eligibility and services in line with Sláintecare.

As we are all aware, public inpatient charges in public hospitals have been removed, first for children under 16 years of age in 2022 and then for adult public patients in 2023. We have also focused on reducing costs in primary care, delivering the largest expansion of GP visit cards in 2023 to include children aged six and seven and those earning no more than the median income.We have also focused on reducing costs in primary care, delivering one of the largest expansions of GP visit cards in 2023 to include children aged six and seven and those earning no more than the median income. This enabled these patients to visit their GP free of charge. These two GP access measures provide eligibility to approximately 500,000 additional people.

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, as we all know, 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. There are about 80,000 discretionary medical cards in the mix now. The issue of providing a patient with eligibility on the basis of illness or a 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 or 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.

In respect of medications, there has also been a focus on reducing costs for families. As we know, the drug payment scheme threshold was €124 per month in 2020. It now stands at €80 per month - a reduction of over 33%. I am not sure if the response addresses the issue the Senator raised in relation to a young person with a disease such as Crohn's disease or other difficult bowel conditions. I will certainly raise this aspect with the Minister to see if there is any consideration that can be given. The regulations were made more than 40 years ago, so maybe it is time for them to be looked at again.

Maria Byrne (Fine Gael)
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I thank the Minister of State for her positive response. I agree with what she said about these rules having been made more than 40 years ago. I know one or two people who have Crohn's disease would certainly love to make a submission to the Department in relation to their condition and maybe even a case study concerning how debilitated and ill they are. Perhaps this might be something the Department might be open to receiving and perhaps the Minister of State might be able to check this out for me. To see how ill that young girl was really was the cornerstone in this regard for me. The other lady I met was pregnant, but has had a diagnosis of the disease since she was 11. She said it never leaves you, you just learn to manage it. That young girl, though, certainly spends most of her time in hospital - this is the key thing here. She also spends a lot of time at home and this means her mother has to take time off work to stay with her. I would appreciate any support the Minister of State can give or any information she can bring back to me.

Mary Butler (Waterford, Fianna Fail)
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Any disease or condition a person, especially a young person, is living with is very difficult. It is difficult for the parents and siblings too because when somebody is ill in the house, everybody is involved. This is the right way. At the same time, though, Crohn's disease is very debilitating and very difficult for a young person to manage. They do not want to have to battle for things such as a medical card. The Department will always welcome any submissions it gets. All the correspondence that comes into the Department is looked at. If the Senator would like to see if the people she mentioned would like to write in, we can 100% facilitate that. I will speak to the Minister about this issue, because, as I said, even the wording I was quoting in my first contribution - regarding the 1975 Act - is no longer appropriate.

Maria Byrne (Fine Gael)
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Absolutely.

Mary Butler (Waterford, Fianna Fail)
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This is especially the case when we are talking about the new mental health Bill I will be bringing to Report Stage on Wednesday. It is a huge Bill and I am looking forward to bringing it into the Seanad shortly. I will bring this matter back to the Minister and revert to the Senator.

Maria Byrne (Fine Gael)
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I thank the Minister of State.