I welcome the opportunity to speak today. An estimated 300,000 people in Ireland live with a rare disease. Too often, they are faced with years of uncertainty, navigating a fragmented system. This must change. The national rare disease strategy is welcome and provides a framework but it must be properly funded and implemented. It promises integrated life-course care pathways, expanded newborn screening and wraparound supports. To deliver this, the Government must deliver the necessary funding. The development of diagnostic, critical specialist and general multidisciplinary capacity must be a priority. It is still the case that access to life-changing drugs is far too slow. Government must deliver on its own commitments in the programme for Government. I welcome the Minister's commitment to a review and the additional capacity in the system. A tracking system was committed to which must be delivered on. Importantly, there is a commitment in the programme for Government to try to ensure early access. Government must ensure early access happens. I acknowledge the pilot but while pilots are something, they are by their very nature exclusive. I noted the Minister's comments early on Skyclarys for Friedreich's ataxia. She has to know time is of the essence and every day counts. It is similar for boys with Duchenne muscular dystrophy. I welcome recent developments with respect to accessing givinostat but I implore the Minister and the Government to maintain momentum until every child who would benefit from that drug has access to it. We must also ensure the drugs reimbursement system is fair, transparent, accountable and commands public confidence. That is why I am proud Sinn Féin Healthcare (Transparent Payments) Bill 2022 which I cosponsored with colleagues will go to Second Stage next week. This Bill is about ensuring integrity in our health service. It will require pharmaceutical companies to declare all payments and transfers of value to healthcare professionals and organisations, ending the current inadequate voluntary system and bringing Ireland in line with international best practice. An estimated 300,000 people are waiting for action. They need timely diagnoses, access to medicines and a system they can trust. We must deliver for them.

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