Joe O'Reilly: Include Addison's Disease in Long-Term Illness Scheme

Thank you, thank you Laskar Heirloch, and thank you for the warm welcome earlier Laskar Heirloch to my wonderful colleague Camilla over there. I want to welcome Minister O'Donnell at the outset and say that he's a very apt person to address this question as he comes from a distinguished medical family himself and in the present generation and in past generation. Basically to begin Laskar Heirloch, I wish to make an issue, to raise an issue concerning people living with Addison's disease and I want to ask the Minister for Health through Minister O'Donnell to consider whether this condition should be included under the long-term illnesses scheme and it's my contention that it should. Addison's disease is a serious lifelong condition that affects the body's ability to produce essential hormones needed to regulate blood pressure, metabolism, energy levels and the body's response to illness and stress. For those living with the condition, medication is not optional. It is something they depend on every day of their lives. In fact up to 90% of cases are caused by permanent autoimmune damage to the adrenal glands meaning patients rely on lifelong hormone replacement therapy because their bodies can no longer produce hormones naturally. Nobody chooses to live with Addison's disease, quite the contrary nobody can take a break from it and nobody living with it can simply stop treatment and carry on as normal and just for a moment to list the symptoms. Severe abdominal back or leg pain, vomiting, diarrhea, weakness, confusion, loss of consciousness, dangerously low blood pressure and treatments can include emergency hospital admission, intravenous steroids and intravenous fluids and ongoing monitoring. Without medication people can become seriously ill very quickly and may suffer an adrenaline crisis and a medical emergency involving what I just listed that can require urgent hospital treatment and can in some cases be fatal. The reality is that people with Addison's disease must carefully manage their condition every day. They must take medication consistently, carry emergency medical information and be prepared for situations where illness or injury can suddenly increase their need for treatment. We often speak about supporting people with long-term illnesses, we speak about preventative health care, we speak about ensuring that people recover the treatment they need, that people receive the treatment they need before their condition becomes a crisis. That is why I believe there is strong case for reviewing the position of Addison's disease under the long-term illness scheme. This is not about seeking special treatment, it is about recognizing the reality of a lifelong condition that requires continuous medication and ongoing medical management. I would therefore encourage the Minister and our Department, through you Minister O'Donnell, to engage with clinicians, patient representatives and relevant stakeholders to examine the case, which I believe firmly exists and shouldn't take long, that the current arrangements do not adequately reflect the needs. In other words, there is a compelling case to include in the long-term illness scheme into the future. The question is not how many people are affected, the question is whether people whose health depends entirely on lifelong hormone replacement therapy are receiving appropriate support from the state. My final contention, Minister, is that there's an inherent injustice in not treating this illness in an equitable way with other illnesses, some of which in fact don't have as grievous of symptoms. Thank you. Thanks very much. I'm taking this debate on behalf of the Minister for Health, Jennifer Carroll-McNeil, and I want to very much thank the esteemed Senator Joe O'Reilly for raising this matter. The long-term illness LTI scheme was established under section 59.3 of the Health Act 1970 as amended. Regulations were made in 1971, 73 and 75 prescribing 16 conditions covered by the scheme. There has been no changes to the list of 16 conditions since that time. Under the long-term illness 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 the long-term illness scheme exists within a wider eligibility framework. People who cannot, without undue hardship, arrange for the provision of medical services for themselves and their dependents may be eligible for a medical card. Eligibility for a medical card is determined by the HSE, primarily based on 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. The HSE afford applicants the opportunity to furnish supporting documentation to determine whether undue hardship exists and to fully take 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 a 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 experts group advice, a person's means test remains the main qualifier for a medical card. However, over the last several years there have been a significant focus on improving access to and affordability of healthcare services. This has been advanced through substantial policy legislation and investment to deliver expanded eligibility and services in line with slanted care. Major expansions in eligibility include the removal of public inpatient charges in public hospitals for children in 2022 and for adults in 2023. In 2023 the provision of free GP visit cards to include children aged six and seven and those earning no more than the medium income. Those changes impacted up to half a million, 500,000 people. The reduction of the drug payment scheme DPS threshold which caps monthly expenditure for approved prescribing medicines. The DPS threshold was reduced to 80 euro per month in March 22. This is a 35 percent reduction since 2020 when it was 124 euro. The DPS is not means tested and is available to anyone ordinarily resident in Ireland. Taken together these significant changes and expansions in eligibility continue to create a health and social care service that offers affordable access to healthcare to more people. And Deputy, the points that you specifically raise in respect of additions, these are matters that I will bring to the attention of the Minister for Health, Jennifer Cowan-McNeill and the department officials and I await your follow-up response. Thank you. Yeah, thank you Lasker-Hurlock and thank you Minister O'Donnell. While I appreciate the support that is available, Addison's disease presents a particular challenge because the medication involved is not simply therapeutic. It replaces hormones that are essential for life. The question before us is not how many people are affected, the question is whether people whose health depends entirely on lifelong hormone replacement therapy are receiving adequate support from the state. People living with Addison's disease do not have the option of stopping treatment. Their medication is required every day for life. Ensuring reliable success, access to that treatment protects patients, helps prevent dividable medical emergencies and reduces pressure on our hospitals. And finally I would just say that I would ask you to ask Minister Cowan-McNeill to review this situation, to examine it once again and to look at it on equitable grounds, that this condition is asgrievous. That's not to diminish any other condition, but it's among the very serious conditions and it presents equal, if not even more challenges than some illnesses already listed. So I hope that you can convey that to the Minister and that this could be reformed into the future. It's something that we can't avoid looking at. Thank you. Once again I want to thank Senator O'Reilly for raising this important matter. As I've stated previously, I'm taking this matter on behalf of the Minister for Health, Jennifer Cowan-McNeill TD, and I have very much taken on board the points that you have raised and revert to the Minister for Health on your behalf, specifically a point you raised. As I said earlier, while there are no plans to extend the scope of the scheme, the long-term illness scheme exists within a wider eligibility framework and the government is focused on expanding eligibility, improving the affordability of healthcare through a wide variety of measures. As mentioned, measures like the substantial reduction in drug payments, scheme threshold, the introduction of GP chronic disease management program under which eligible patients receive annual scheduled reviews with a GP and practice nurse, the expansion of access to free GP care to include more children and adults, and the abolition of all public inpatient hospital chairs for both children and adults have all had substantial impact on affordable healthcare. These measures continue to create a health and social care service that offers affordable access to quality healthcare. In addition, Senator O'Reilly will be aware that individuals may also be entitled to claim tax from respect to the cost of their medical expenses who may be prescribed by a doctor. Dentists' relief is at the standard rate of 20%. Aside from eligibility and affordability, there remains a continued focus on improving the services available to people, as seen in the programme for government commitments. Deputy, you raise important points. I will, as I said previously, bring them back to the attention of Minister Colin McNeill on the specific points you raised around Addison's disease and the long-term illness scheme. Thank you. Thank you.