I want to update Senators on the status of what is happening with givinostat because people care and I know Senators all care about this. I am told the company has submitted all required documentation and a final offer is on the table. Most importantly, this drug will now come before the drugs group at its June meeting. For those unfamiliar with the drugs group, it is the body that reviews medicines and makes recommendations to the HSE on whether treatments should proceed towards reimbursement and access for patients.

The group's decision matters so much because it directly impacts whether families get the drug or face more delays. I have to apologise as I am feeling really emotional about this today. Givinostat is an effective treatment that will end up saving the State money retrospectively given how it stops the progression of Duchenne muscular dystrophy, DMD. More importantly it will save the children their dignity. The evidence is there. The need for the drug is there. The families are waiting. I have witnessed first hand the suffering of these children and their families. I can tell Senators that time is not on their side. My fear is that instead of approval being given at the drugs group, this will be kicked further down the line and referred on again to the rare disease technology review committee. For families living with Duchenne, delay is not a option. It means muscle loss that cannot be recovered. It means opportunities for these children that will be lost forever.

Last Friday, the National Institute for Health and Care Excellence, NICE, approved givinostat for boys in Northern Ireland and across the UK. Boys in Belfast could have access to this drug within a matter of weeks. Let us think about that. If we were a couple of hours up the road, we would be celebrating. Children on this island a couple of hour's drive down here could be facing a completely different future. Speaking of celebrations, my little friend Archie Ennis will make his Communion tomorrow. One of the most special milestones in all of our lives but Archie's family have a cloud hanging over their heads of fear and worry of what the future holds for him. For Ireland to refuse or endlessly delay access to the innovative, life-changing treatment is nothing short of unforgivable. Families have waited long enough. I want to see action on this now.