Medicinal Products Seanad Éireann — 2026-03-03 ============================================================ Jennifer Carroll MacNeill (FG), Dún Laoghaire I thank Senator Ní Chuilinn for raising this important matter. Supporting those living with rare diseases is a priority for me as Minister and for the Oireachtas. It is important to remember that 300,000 people, as the Senator said, are living with a rare disease. While the disease may be rare, the fact of living with a rare disease is not. On foot of that, the national rare disease strategy was launched in August 2025. The Department of Health will now ensure its implementation and its vision to ensure that all people living with a rare disease have fair, equitable, inclusive, safe and cross-sectoral care throughout their journey. An implementation oversight group has been launched. It met in February and that implementation work is under way. Work has begun on planning for the 11 recommendations. As implementation of the strategy progresses, it is of course intended that patient representation will be a key feature and will be embedded in all structures. I have a couple of updates on the pricing and reimbursement system. There has been dramatically increased resourcing across the pricing and reimbursement system, with 34 new people hired to work in it. That is essentially a doubling of that team, which is very important. There is also the development of a tracker to increase transparency. Since the negotiation of the agreements in principle on the supply and pricing of medicines with the Irish Pharmaceutical Healthcare Association and Medicines for Ireland, those agreements will commence this year and last until the end of 2029. Those agreements work alongside and indeed supersede some of the other work because they provide the commitment and structured process towards achieving a 180-day timeline for completing the health technology assessment and the reimbursement decisions. That is a significant change from the current waiting period. It is important to remember that there has been an additional €158 million in funding in the past four years. We have delivered access to 250 new medicines in that time, about 110 of which were for cancer and 69 were for rare diseases. While we have allocated another €30 million in funding specifically for new medicines, at the moment we spend close to €4 billion every year on drugs. The pressure of that on our budget is significant. That is nearly €4 billion, which is more than twice the complete spend on the Department of Defence. The Department of justice spends €6 billion in the whole year for all the salaries of An Garda Síochána and the justice system in its entirety. That is to put the €4 billion in context. It is a very significant amount of money. What are we spending . that on? We are spending it on medication people get in hospital, that people get through their pharmacist that is paid for by the State. Even where a person pays €80 in the pharmacy, it is not that the drugs cost €80, it is that the State pays for the rest of it. Those are benefits to the taxpayer and to people living in Ireland in the healthcare system. The pricing is an important part of the reimbursement decisions that will ultimately have to be made in respect of rare disease drugs, as every other drug, and the State has to try to get the best value for money to continue to support as many people as possible within the budget, even though that budget is expanding. It is also important to say that, as part of the framework agreements to which I referred, the State and the pharmaceutical sector have agreed to establish a strategic partnership on the development of sandboxed early access for rare diseases. That is a proof of concept initiative. It aligns with the commitments in the programme for Government. In parallel, my officials have examined reimbursement systems throughout the European Union. They will bring forward further proposals in the coming months. Those mechanisms are quite complex and the potential impacts have to be considered carefully. I thank the Senator for giving me the opportunity to discuss the matter. --- Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted. Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-03-03/debate/main Retrieved: 2026-08-14T04:54:42+00:00 Sitting date: 2026-03-03