Teresa Costello (Fianna Fail) | Oireachtas source

Duchenne muscular dystrophy, DMD, is a progressive neuromuscular disease that causes muscle weakening. It is the most common lethal genetic disorder diagnosed during early childhood, primarily affecting young boys. Worldwide, one in every 3,500 baby boys is born with DMD, with symptoms typically starting between the ages of one and five. Here in Ireland, approximately 110 people are known to be living with DMD, the majority of them under the age of 18. These young children face tremendous challenges, including difficulties standing up, walking, running or even climbing stairs.

DMD is a disease I had no knowledge of until a young boy from Tallaght, Archie Ennis, was diagnosed. Watching his parents and the community come together to try to raise €3.2 million for gene therapy in the United States has been truly heartbreaking. However, there is a drug called givinostat, which, if given the opportunity, could help halt the progression of DMD in little Archie's body and in other children affected.

For those unfamiliar with the symptoms, a child with DMD may have difficulty walking, running or jumping, struggle with standing up, experience delayed speech development, be unable to climb stairs without support and face behavioural or learning difficulties. Givinostat is a relatively new drug that works to slow down the progression of muscular degeneration in individuals with DMD. While it cannot undo the damage done, it can significantly slow down the progression when administered. One of the cruellest aspects of DMD is that people are racing against the clock.

In December 2024, givinostat was approved by the UK's Medicines and Healthcare products Regulatory Agency for people with DMD aged six and older. The drug is now available through the early access programme, with local NHS invited to participate. The programme allows for medication to be provided to patients at no cost. However, despite the approval of this drug, it has not yet been made available to patients throughout Ireland.

As we reflect on the struggles of those living with DMD, we must acknowledge the urgency for accessing this life-changing treatment, givinostat. Every moment counts for a child like Archie and it is crucial that we advocate for them so that they can also have the chance to benefit from these advancements in medical care. I call on the Minister for Health to make a statement on the status of givinostat being made available to Irish patients because without this option, 110 people will continue to suffer.