Like other colleagues, I want to raise not only the awful deteriorating disease that is Duchenne muscular dystrophy, but also the need for an approach to an early access programme along the lines of what is in Belgium, the UK and the US. In my constituency, there are two very unique and special boys, Conor and Dean Thompson, who have been spearheading the Build for the Boys campaign. Speaking to families like theirs last week when they were here about the impact it has on parents watching their boys deteriorate and lose that ability to walk over time, when there is that access to medication, brings into focus our role as legislators to ensure we keep the pressure on to enable an early access programme. The tragedy is knowing about - to which Deputy Seán Crowe alluded earlier - and having access to givinostat on the island. How do we ensure this story is not replicated for all the other people who suffer from rare diseases?

In the programme for Government, there is a very clear commitment to implement an early access programme. Can a compassionate access scheme be included as part of that, and the very sensible recommendations of the Mazars report on how to streamline this process, adequately staff it and increase the capacity for communications with patients for access to these drugs be taken on board and prioritised by the Government as a matter of urgency to stop these stories coming to us all the time? Can we put in place real structures that families can have confidence in, especially when afflicted by rare diseases?

I thank Deputy Moynihan so much for raising this and for his advocacy on behalf of Conor and Dean and so many children and patients more widely across our country who want us to get this right in terms of access to medication. I could point out that we have made good progress. From 2021 to 2024, we allocated an additional €128 million for new medicines. That facilitated the introduction of 194 new medicines in Ireland and I am pleased to say, in particular, 49 of these are for rare diseases. However, I do take the point about the system. We need to get a system that is more agile and responsive in advancing the programme for Government commitments. The Deputy's suggestion around a compassionate access scheme is very sensible. I will just make the point - and I say this not to be adversarial to the industry - that obviously, the State has a job to do. So too does the industry in how it approaches these matters to get it right. I would also point out that we could do more on joint procurement at an EU level and, indeed, working with our colleagues across the island. We will have a chance through the new framework agreement that will be required between the Department of Health, the HSE and the drugs industry to maybe tease through these issues later this year. I will relay the Deputy's views and inputs to the Minister for Health as a result of this.