Mark Ward urges urgent action on Givinostat access
Mark Ward addressed the chamber to press for faster access to Givinostat for children with Duchenne muscular dystrophy, citing two local cases and calls from families. He highlighted the cross-border disparity in availability and urged the Minister to prioritise the next step so treatment reaches children without further delay.
Local cases and family campaign
Mark Ward outlines that Duchenne muscular dystrophy affects around 100 children in Ireland and that two boys in his constituency, Conor and Dean Thompsons, are campaigning for access to the drug Givinostat He recounts meetings with their parents and describes the emotional impact on families fighting for life-changing treatment.
Cross-border availability and eligibility concerns
Ward notes that Givinostat is available in the north but not in the Republic of Ireland and conveys campaigners' demands that eligibility criteria align with the NICE approach. He stresses the need to ensure boys who can stand or walk, with or without support, are not disadvantaged by differing rules across jurisdictions.
The urgency: time is muscle
Ward repeats the message he heard from parents that 'time is muscle' and warns that lost abilities cannot be recovered. He welcomes progress reported by the Minister but insists the next step must be prioritised so that children do not lose more function while waiting for an existing treatment to be rolled out.
Early diagnosis and local health services
Drawing on his own experience living with multiple sclerosis, Ward stresses the importance of early diagnosis and intervention. He praises local neurology services but raises concerns about access to public health nurses in Dublin Mid West and incomplete developmental checks for children, calling for those gaps to be addressed.
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I'd like to welcome the women's shed here as well. My own family now live in Wexford as well. My father's in the men's shed and he loves it down there as well in Gordie. So thank you, Ceann Comhairle. Minister, I'm delighted to have the opportunity to talk about rare disease. I've been contacted by many residents in my area about Duchenne muscular dystrophy. And as you know, Duchenne muscular dystrophy is a severe progressive genetic disorder that weakens muscles and affects around 100 children in Ireland. And two of those children are in my area. They are brothers, Conor and Dean Thompsons from Lugan. Both of them are 9 and 10 years of age. And I've met with their parents, Karen and Jamie, as they fought to secure the life-saving treatment for their two beautiful boys. They were campaigning for the boys to have access to the drug Jafinistat. And Jafinistat, Duchenne, is not available in the Republic of Ireland despite being available across the north. And I was at a recent briefing in Lenzer House, Minister, and listened to what families affected by the strain. And I can say there was one person who left that briefing cross-party who wasn't affected by listening to the real-life stories of these families' struggles trying to get this life-saving drug. And I want to thank every person who's contacted me, who rang me, who emailed me, who called to my constituency offices in relation to this. And there has been progress, and I welcome the Minister's comments in relation to the progress. And I do accept the struggles you had with all the jurisdictions in trying to get this across the board. So that is to be welcomed as well. But, Minister, while it's welcome, we still have a bit to go. And what I'd like to see happen is that the next step in this process is not delayed. In fact, I'd like to see the next step in this process prioritised so that the drug Jafinistat gets to the children who need it. Families should not have to watch their children lose abilities while waiting for access for treatment that already exists. Lost abilities cannot be recovered. As we heard directly from parents, Minister, time is muscle. And that's one of the most poignant three words that I've ever heard in any briefing of anybody, that time is muscle. Every day that these children are waiting for this life-changing medication, their children's muscles are literally wasting away. Parents and campaigners want to see equal access also to the drug for the shame, muscular dystrophy. Campaigners want to see that the eligibility criteria for Jafinistat are aligned with the NICE approach, ensuring access for boys who can walk or who can stand with or without support. They're looking for that criteria to be there. Boys in the south are not disadvantaged over boys in the north, and that everybody receives equal access to care. Minister, I'll just finish up on a small little bit. You talk about early diagnosis, and early diagnosis is key to get early intervention. I'm speaking as a person who's living with multiple sclerosis. I often say that I'm not living with multiple sclerosis, multiple sclerosis is living with me, and God love it. But it took me a long time to get to that place, Minister, because of years. I know it's not a rare disease. There's just about 10,000 people that are living with multiple sclerosis in Ireland. I know it's not a rare disease, but it took me a long time to get diagnosed. In that time, though, I was waiting to get diagnosed and to get the treatment that I need. The treatment at HSE, I have to say, is absolutely brilliant. The neurologic services up in Tala are absolutely fantastic. But if we can get early intervention, for no matter what it is, it'll make a big difference. The last little bit, if you don't mind. The access to public health nurses in Dublin Mid West, Minister, needs to be looked at. We have children who aren't getting their full developmental checks, and that's something that we could look at as well.
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