I very much welcome the opportunity to speak on rare diseases. An estimated 300,000 people in Ireland are living with rare diseases. For their families, the challenges are absolutely immense. Too many face long waits for diagnosis, fragmented care and difficulties accessing treatments that could significantly improve or extend their lives. While each rare disease may affect a small number of people, collectively, rare diseases affect one in 17 people in this country. This is not a niche issue; it is a national issue. The Oireachtas and the Government need to work together to make sure that there is a national response. I welcome the National Rare Disease Strategy 2025-2030 and the commitment to improving diagnosis, care, research and access to medicines. Strategies alone do not change lives, however. Patients need to see real and tangible improvements. One of the greatest frustrations for patients is that scientific advances are moving faster than our ability to deliver such advances to the people who need them. Ireland is a global leader in pharmaceutical innovation. We manufacture some of the most advance medicines in the world. We are rightly proud of the jobs this creates, the investment it attracts and the contribution the sector makes to our economy. There is a desperate contradiction at the heart of our system that we cannot continue to ignore. The medicines are developed here. The innovations happen here. Our researchers, scientists and healthcare professionals are helping to drive breakthroughs that are changing lives across the world. Our economy benefits enormously from that innovation. Too often, however, Irish patients are upon the last to benefit. We have seen this recently in the context of heartbreaking battles to get people care and treatment. The drugs highlighted in the media recently are givinostat and Skyclarys. I congratulate my colleagues Deputy Pádraig O'Sullivan and Senator Teresa Costello on the strong and diligent work that they have done in relation to these two drugs. Thankfully, givinostat has been approved but people with Friedreich's ataxia are waiting for Skyclarys to be approved. This inequity is to be found across the entire healthcare sector, including in the areas of rare diseases and cancer. We have effectively developed a two-tier system where access to innovative medicines can depend on whether a person has private health insurance or on their ability to pay. Patients who are treated privately can often access new therapies far sooner than those who rely on the public health service. That is not equity. It is not what Sláintecare promised. It is not what the Irish healthcare system should be. Healthcare should be based on need rather than income. The chance of accessing a life-changing treatment for cancer, for example, or, indeed, a rare disease should never depend on a person's financial circumstances. That is why an early access programme for innovative medicines is essential. Patients with rare diseases and cancer should not have to wait for years to access treatments that have already demonstrated significant benefit elsewhere. We also need a greater and more sustainable budget for new and innovative medicines. Investment in these therapies is not simply a cost, it is an investment in better outcomes, longer lives and better quality of life. We must strengthen our commitment to clinical trials and research. I met Cancer Trials Ireland recently and heard how clinical trials are not only improving patient outcomes but also saving the State millions. They provide patients with access to cutting-edge treatment and help to build a stronger and more innovative health service. For patients living with rare diseases and cancer, every day matters and every delay is excruciating. Our responsibility is to ensure innovation does not stop at the laboratory door or the factory gate; it must reach the patient. It is a standard our healthcare system should be judged by and the standard our patients deserve.

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