Gabhaim buíochas leis an Teachta as a chuid ama a roinnt liom. Tá dhá nóiméad agam. I raise the urgent access to the drug givinostat for children-----

Sentiment score: 0.07

Yes. I want to raise the urgent issue of access to the drug givinostat for children living with Duchenne muscular dystrophy, or DMD, as it is commonly known. Givinostat was approved by the European Medicines Agency last June. Nearly a year has passed, the HSE is still reviewing whether it is going to cover the cost of this drug for children and adults across the State. What makes the delays around givinostat's availability particularly distressing - and I am sure the Minister of State knows this - is that it is only available to children who still have mobility. These children are in a race against time, and their parents are looking on as the HSE and the Government drags their feet while their children are seriously at risk of not being able to have the life-changing support offered by this drug. Matters are particularly urgent for young Aaron Langan. Aaron is a nine-year-old from Laghey in my county, Donegal. His family are fearful that if Aaron's mobility is further impacted by this condition that he will not be able to have this life-changing drug, even if the HSE approves its reimbursement. Aaron's mother and father were here in the Dáil last year campaigning and pleading with Government to get its act together to allow them access to this lifesaving drug. At that time, Aaron was walking. Today, he is in a wheelchair. As a result, the issue of mobility is absolutely crucial. This drug is not just a life game-changer for Aaron. Young Diarmuid O'Sullivan from Donegal is another example. Diarmuid is ten years of age. His older brother Nathan was on a trial in Britain. Nathan is now an adult who is able to avail of this drug and have a fulfilled life, yet Diarmuid, who is ten, is not able to have it. Imagine the distress of a parent knowing that one child has the drug that changes your life and the other child is denied it because the HSE and the Government have not got their act together. I ask the Government for a compassionate intervention to allow these drugs be made available to children who are in a race against time.

Sentiment score: 0.07

With respect, that does not cut it for these families. These parents are looking at their children in a race against time. The case of Diarmuid is an example. His mother said that Diarmuid's brother, Nathan, has the same condition. Nathan has had access to the drug through a UK trial for more than ten years but Diarmuid is approaching the age where he is likely to lose mobility. She asked me to imagine being a mother opening the fridge every day to give her eldest boy this life-changing medicine and not giving it to her other little boy. She asked me to imagine the turmoil that causes her day after day. She said she met the Minister for Health and a promise was made to allow compassionate access that would be fast-tracked for her child. She says time is not on her side. The case of Aaron, a young boy of nine years of age, is the same. He was walking when people were pleading with the Government last year and now he is in a wheelchair, not knowing, even if the drug is approved, whether he will be able to access it. This is not good enough.

Sentiment score: 0.02

I am a parent of four young boys. I would go through a wall for them. The Government has to allow compassionate access to these drugs immediately.

Sentiment score: 0.21