I express solidarity with the many people and many children suffering from rare diseases in Ireland. I pay tribute to the many who have to speak out publicly about what they and their families are going through to bring pressure on the Government to approve various medicines, people like Archie Ennis and A.J. Slevin. There are far too many and we should not have to know about their stories. It speaks to something very wrong in how our society, the economy and the pharmaceutical sector are organised. I recently read about research done in France which showed the majority of new medicines developed offer no therapeutic benefit or advancement and about 25% represent real therapeutic advancements. In the vast majority of research, money is going into marketing, research into products with massive markets already and therefore they are just variations on drugs to keep patents ongoing. There is very little in prioritising people's needs and rare diseases. Where there are developments, pharmaceutical companies are holding out to get as much money as they possibly can for them. We need a very different sort of pharmaceutical sector in public ownership in the public interest. I welcome the recommendation of the HSE drug group to approve givinostat for Duchenne muscular dystrophy. I add a request for children like A.J. who will not be of an age to benefit from it - I think you need to be six - that support is given in the meantime - for example, support from the HSE with splints to ensure their muscles do not get weaker while waiting for access. I hope access is granted for whoever needs it as soon possible. On Friedreich's ataxia Skyclarys is the only drug that has been shown to slow the disease. It was approved by the EMA and is available in other European countries. I will quote from a constituent: The NCPE issued a harsh verdict for Skyclarys on 17 December 2025. While I understand the HSE is still in discussions with the manufacturer, the delay is costing my niece time to slow this cruel disease. It is already heartbreaking watching her fade even though a drug that works exists but is out of reach. In the 570 plus days since the application for its use in Ireland was lodged, many in the community have lost the ability to stand upright, walk, feed or dress themselves and to speak clearly. Many have lost all hope. Time is ticking. We need urgent movement on Skyclarys and the other orphan drugs that have not been approved in our system.

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