2026-06-18

I thank all the Deputies from across the House who have contributed to this important discussion. The contributions from across the House have been thoughtful, constructive and, above all, grounded in the lived experience of the families and people affected by rare diseases. Many Members have spoken with real insight and compassion about the challenges faced, the long wait for diagnosis, the difficulty navigating services, the strain placed on families and the understandable frustration when access to medicine and treatments are delayed. What has come through clearly is that while the details of individual conditions may differ, the themes are constant. People want answers sooner. People want care that is more joined up. They want greater clarity, better support and, where possible, access to new and innovative treatment in a timely and compassionate manner. Above all, they want to be heard, not occasionally but as a core part of how decisions are made. I want to acknowledge the powerful advocacy that Members have reflected on today. I want to pay tribute to Deputy O'Sullivan, others in my party and Members across House who have advocated. Deputies have brought the voices of patients and families directly into this Chamber. This ensures the work remains grounded in the reality of people's lives, not just in policy frameworks. I want to take a moment to acknowledge Craig Coady, who was here today, and his son Paudie. I have known the family for many years over my time as a public representative. I know Craig has been to the fore in accessing drugs for Paudie. I pay particular tribute to him for the advocacy and engagement he has had with Members across the Chamber. He has advocated on behalf of his family and I pay tribute to him for the outstanding person he is, considering the burdens that have been placed upon him. He is working very hard and I reach out to him and other the families today. I know Craig well as well as the many others who have reached out to us. Like all Deputies in the House, we know families in our own areas. I cannot pre-empt the outcomes of the HSE drug group but having engaged with the Department of Health, I know that everybody across the national system and in the HSE is working as quickly and thoroughly as possible to advance the process involved. Nobody is trying to delay this and everyone is acutely aware of how important the timelines are for individuals and families. In all contributions, there has been a strong and shared understanding that while progress has been made, there is an awful lot more work to do. It is important that we recognise that. The national rare disease strategy 2025-30 provides a clear structure and patient-centred framework for change. As we speak today, patients, advocates, clinicians and Department officials are meeting to further review the strategic implementation plan. This is to ensure that commitments in the strategy translate into practical actions with timelines and accountability. We have made progress in screening and diagnosis, including the expansion of the newborn screening programme to include more rare diseases. This step will make a real difference for children and families by enabling earlier intervention. Work will continue to further expand our newborn screening programme. In this regard, the National Screening Advisory Committee, NSAC, has accepted advice from its newborn screening subgroup on the grouping of similar conditions into a singular health technology assessment, HTA, process. The aim of grouping conditions is to expedite the review process timeline. As things stand, and dependent on the findings of the HTA, this creates a pathway to significantly expand the national newborn blood spot screening programme before the conclusion of the national rare disease strategy in 2030. We are strengthening our approach to genetics and genomics, including through the delivery of the national genomics test directory for rare and inherited diseases. This will help to ensure patients receive the right test in the right place at the right time. We are seeing progress on care co-ordination, with the introduction of dedicated care co-ordinators and continuing development of integrated care pathways. This is in recognition that, for patients, co-ordination is not an administrative detail but a fundamental part of their experience of care. We are taking steps to improve access to medicines, including through the new framework arrangements, the commitment to an early access scheme for rare diseases and the move towards timely reimbursement decisions. We are also looking critically at our existing systems. The decision to undertake an end-to-end review of the medicines approval and reimbursement process reflects the recognition that we must continue to improve how we deliver for patients, particularly where delays and uncertainties have real impacts on the lives of our citizens. We are seeing encouraging examples of progress on individual conditions. A number of decisions were taken recently whereby we showed that when we work together constructively, we can move forward and do so at pace. That kind of collaboration really matters and we must continue to build on it. At the same time, we must be honest that despite all the progress we are making, families are still experiencing many of the challenges Deputies have raised. For too many people, care is still fragmented, diagnosis is taking too long, and access to services and support can be difficult. For families waiting for treatment, the timelines feel far too long. That reality must continue to guide our work. The true measure of progress is not what we can point to in a policy document but, rather, what people experience in their daily lives. Do they receive answers more quickly, is their care more co-ordinated, does the system feel easier to navigate and do they feel supported, not just clinically but as individuals and families? These are elements we must improve. I return briefly to the central theme that has run through this debate, namely, the importance of patient partnership. It is not an optional element of the policy; it is absolutely fundamental to it. People living with rare diseases and their families bring expertise that no system can replicate. Their voices must continue to shape how we design services, prioritise investment and measure progress. That is why patient involvement is embedded in the national rare diseases strategy. That commitment must now be fully carried through into the implementation of the policy. We are at a point of real opportunity. We have a national strategy, we are putting structures in place and we have momentum. Internationally, rare diseases are now recognised as a global health priority and there is increased alignment across Europe on the need for more co-ordinated approaches to research, diagnosis, care and access to treatment. The task ahead is clear. We must continue to implement the rare diseases strategy with a focus and urgency to reduce delays in diagnosis, improve co-ordination of care, strengthen access to medicines and treatments in a fair, transparent and timely way, and ensure patients' voices remain at the very centre of everything we do. No one should have to navigate these complexities alone. Nobody should have to fight so hard to be heard, understood and to have access to the care they need. Our role, collectively and individually, is to build a system that responds with compassion, clarity and co-ordination. We have made progress. There is more to do but we are moving in the right direction. Working together, in government and right across the House, together with the stakeholders, patients and their families, we can continue to make real progress.

On a point of order, will the Minister of State give us some direction on the situation regarding Skyclarys?

Sorry, Deputy, that is not allowed.

That is all I am asking. The Minister of State might respond briefly in the 30 seconds remaining to him.

The Deputy has not raised a point of order.

It is a very important issue. People are dying.

If the Minister of State wishes to use the time remaining to respond to the Deputy, he may do so.

I appreciate the importance of this issue but I do not want to mislead the House. There is movement on it. We are pushing it with seriousness at our end. There is a lot of complexity involved but we are working seriously on the issue. I cannot give the Deputy dates but I can guarantee that everything that can be done on the Government's part is being done. We all know families and individuals affected by this. We are bound to ensure we remove any obstacles on our side. That is being done in a very serious way.