I welcome the opportunity to speak on this important issue. While some conditions are more widely known than others, both common and rare diseases have far-reaching impacts across our society. In recent times, awareness and advocacy campaigns have brought these issues to the forefront of public and political discourse. We have seen this through initiatives such as the FTD brothers' campaign raising awareness of dementia and through the courageous efforts of families affected by Friedreich's ataxia who have spoken publicly about the urgent need for medical intervention. In my home county, there are a number of families living with Friedreich's ataxia. I think particularly of Liam and Kiara Lynch and Theresa Kane and her two young children. For those who are unfamiliar with this disease, it is a rare, inherited neurodegenerative disorder that can cause progressive damage to the nervous system and the heart. There is a treatment that has the potential to slow the progression of this and it offers life-changing benefits and, crucially, more time for those living with the condition. Approximately 200 people and their families are affected by Friedreich's ataxia in Ireland, and ensuring early access to this treatment would make a meaningful difference to each of them. This issue highlights the broader challenges around access to innovative medicines for rare diseases. We must adopt a more responsive and flexible approach in Ireland to ensure that patients can access new, potentially life-altering treatments in a timely fashion. In recent weeks, I have met with Biogen, the producer of Skyclarys, on a number of occasions to urge efficiency and urgency in its negotiations with the HSE. I have also engaged with the HSE and the Minister, Deputy Carroll MacNeill, to push as strongly as possible and to make sure that we get this drug, within the constraints of the proper negotiations that have to take place on behalf of the State. These discussions are progressing, albeit slowly, but we must examine our wider approach to rare diseases. A recent paper from the Alliance of Rare Disease Companies Ireland highlights the need for reform, noting that the current one-size-fits-all model for assessment and reimbursement is not fit for purpose. The programme for Government includes a commitment to review the drugs reimbursement process. However, it is essential that specific consideration be given to innovative and orphan medicines as part of this review. I have recently learned of the managed access approach, which is used in other countries such as France. This model allows patients to access new treatments immediately while data is gathered over a defined period. A formal review takes place, with negotiations continuing in parallel. It is a pragmatic solution that prioritises patients' care while ensuring robust evaluation. We need to be more innovative and flexible in how we approach access to medicines. There are critical conversations and they must continue if we are to ensure that patients receive the life-changing care they need when they need it. I would also support further research and development incentives for our pharma industry to do research into producing new drugs that may give an improved quality of life to our citizens and work in tandem with the managed access programme so that when these innovative drugs are developed, they are accessible and can be used by our citizens. I thank the Minister, Deputy Carroll MacNeill, for her engagement with me on this. It is important that we come to a conclusion shortly to make sure that our citizens and those who are suffering, particularly from Friedreich's ataxia, get the treatment they need to give them an extended quality of life.

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