Barry Heneghan (Dublin Bay North, Independent)
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1643. To ask the Minister for Health if she will outline how she plans to respond to the 2025 World Health Assembly Resolution on Rare Diseases, with particular reference to improving equitable access to treatment and reducing financial burden for patients living with rare and lifelong conditions not currently covered under the long-term illness scheme; and if she will make a statement on the matter. [30731/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The National Rare Disease Steering Group was established in December 2023 and was tasked with developing a new National Rare Disease Strategy for Ireland. Its vision is to ensure all people living with a rare disease, and their families, have access to equitable, inclusive and cross-sectoral care throughout their life journey that will enable them to reach their full potential and to live their best lives. My Department has reviewed and is supportive of the 2025 World Health Assembly Resolution on Rare Diseases. The World Health Assembly Resolution on Rare Diseases and the New National Rare Disease Strategy strongly align.

Funding of €1.5m has been provided for rare diseases in Budget 2025 with an additional €5m provided to support the implementation of this Strategy. This funding, alongside the implementation of the new National Rare Disease Strategy, will lay a solid foundation upon which to build into the future, addressing the wide ranging needs of PLWRD including equitable access to services, and appropriately reducing the financial burden on PLWRD and their families. It is my intention to publish the Strategy shortly pending Government approval.

With respect to the Long-Term Illness (LTI) Scheme specifically, it 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. While there are currently no plans to extend the list of conditions, it is important to remember that the LTI Scheme exists within a wider eligibility framework.

There has been a significant focus on improving access to and the affordability of healthcare services over the last few years. This includes reductions in the Drugs Payment Scheme threshold, expansion of access to free GP care, and the abolition of all public in-patient hospital charges for children and adults. These measures continue to create a health and social care service that offers affordable access to quality healthcare.

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 under the General Medical Services (GMS) Scheme. In accordance with the provisions of the Health Act 1970 (as amended), eligibility for a medical card is determined by the HSE.

In certain circumstances 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. In circumstances where an applicant is still over the income limit for a medical card, they are then assessed for a GP visit card, which entitles the applicant to GP visits without charge.

Under the Drugs Payment Scheme (DPS), no individual or family pays more than €80 a month towards the cost of approved prescribed medicines. The DPS is not means tested and is available to anyone ordinarily resident in Ireland. The DPS significantly reduces the cost burden for families and individuals with ongoing expenditure on medicines.

I welcome this WHA resolution and are supportive of it and its commitments, which, if fully realised will result in a step change for people living with a rare disease.