Sarah O'Reilly (Aontú)

I recently had the privilege of meeting representatives of SMA Ireland in the audiovisual room. Spinal muscular atrophy, SMA, is a rare condition that causes weakness throughout the body. People living with SMA can experience difficulties swallowing, breathing and performing basic day-to-day activities. In recent years, the HSE has approved three treatments that can halt the progression of this condition and significantly improve an individual's quality of life. Unfortunately, these treatments are unavailable to those who are over the age of 18.During the general election, one woman reached out to our south Kildare representative, Melissa Byrne, to share her brother's experience with spinal muscular atrophy, SMA. She described the difficulty people with the condition face as they find themselves unable to access essential healthcare. We cannot stand idly by when we know there is treatment available that could dramatically improve their quality of life. When we look at the details of this, it makes zero sense. A child who starts treatment at age 17 can continue to receive it after they turn 18, but an individual who is aged 19 cannot receive the same treatment and this needs to change. I ask the Minister to consult the HSE to remove the restrictions that see people with SMA locked out of the healthcare system.

We also need to ensure there is timely access to givinostat once it is rolled out within the EU. This drug is a game-changer for children with Duchenne muscular dystrophy, DMD, as it slows down the progression of the disease. There is a concern that even with the drug approval being fast-tracked within the EU, it could take up to two years for Irish patients to be able to avail of it. Children with DMD cannot wait. Their disease is a progressive one and needs to be treated quickly. We must ensure timely access to givinostat for children with muscular dystrophy. It is a priority.