Donegal TD warns children ‘seriously at risk’ without access to ‘life-changing drug’

Sinn Féin TD Pearse Doherty and Fianna Fáil TD Pat The Cope Gallagher raised the requirement for the drug Givinostat with the Minister for Health, Jennifer Carroll MacNeill, earlier today

Published 13th May 2026, 18:31 BST Sinn Féin’s Deputy Dáil Leader, Finance Spokesperson and TD, Pearse Doherty Sinn Féin TD Pearse Doherty and Fianna Fáil TD Pat The Cope Gallagher raised the requirement for the drug Givinostat with the Minister for Health, Jennifer Carroll MacNeill, earlier today Donegal TDs highlighted the urgent need for a drug to be made available for children suffering from Duchenne Muscular Dystrophy.

Sinn Féin TD Pearse Doherty and Fianna Fáil TD Pat The Cope Gallagher raised the requirement for the drug Givinostat with the Minister for Health, Jennifer Carroll MacNeill, earlier today.

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Deputy Doherty has been in contact with the parents of two children who are waiting to gain access to the medication.

The children need to be mobile to be prescribed the drug and it is a “race against time” as one of the children is in a wheelchair.

"Givinostat was approved by the European Medicines Agency last June, so it's nearly a year now and the HSE is still reviewing whether they are actually going to cover the cost of this drug for children across the state,” Deputy Doherty said. "What makes the delays around Givinostat's availability particularly distressing, Minister, and I'm sure you know this, is that it is only available to children who still have mobility.

"So these children are in a race against time and they are looking on as the HSE and the government drags its feet as they become seriously at risk of not having this life-changing support through this drug.

"The matter is particularly urgent for young Aaron Langan. Aaron is a 9-year-old. He is from Laghey in my county of Donegal and his family are fearful that his mobility will be further impacted by this condition and that he will not be able to access this life-changing drug even if the HSE approves its reimbursement.

"Aaron's mother and father were here last year in the Dáil pleading with the Government to get their act together to allow them access to this life-changing drug. At that time, Aaron was walking; today, he is in a wheelchair.

"This drug isn't just a game-changer for Aaron, young Diarmuid O'Sullivan, again, from my own county of Donegal. Diarmuid is 10. His older brother Nathan was on a trial for Givinostat in Britain and is now able to live a fulfilling life. But Diarmuid is not able to have this drug."

The Minister detailed the progress that has been made in providing the drug, but Deputy Doherty said that doesn't cut it for families.

"These are parents who are in a race against time,” Deputy Doherty continued. "The case of Diarmuid is an example of this. Diarmuid's mother spoke to me and she said: 'Imagine, as a mother, opening the fridge every day and giving my eldest boy this life-changing medicine and not to my other little boy. Imagine the turmoil that this causes me day after day.'

"She said that she met with the Minister for Health and a promise was made to allow compassionate access that would allow the drug to be fast-tracked for her child. She says that time is not on her side.

"Aaron's case, a young boy of 9 years old, is the same. He was walking when they were pleading with the government last year. Now he is in a wheelchair.

"Minister, this isn't good enough. I'm a parent of 4 young boys, I'd go through a wall for them. Government has to allow compassionate access immediately for these drugs."

Related topics: Pearse Doherty Sinn Fein Donegal Jennifer Carroll MacNeill Sign up to our Donegal Live newsletter Sign up Thank you for signing up! Did you know you can manage your profile, and explore all of the available newsletters from Donegal Live within your account.