A breakthrough has been reached in the fight to get life-changing medication for Irish children with Duchenne muscular dystrophy.
Givinostat, the drug at the centre of the campaign, has now been approved by the HSE Senior Leadership Team.
The approval brings families a step closer to treatment for their boys affected by the rare and progressive condition, which causes muscles to weaken over time.
Donegal Senator Manus Boyle confirmed the update this evening, describing it as a “significant milestone”.
“I am delighted to share this evening that Givinostat has now been approved by the HSE Senior Leadership Team,” he said.
“The application has now moved to the Managed Access Protocol stage, which is one of the final steps before access can be made available.
“Thank you to everyone who has supported this journey. Thank you to Minister Jennifer Carroll MacNeill for her support and engagement on this issue.”
The news will be warmly welcomed by all who support children like nine-year-old Aaron Langan from Laghey, whose campaign for access to Givinostat gathered huge public support in recent months.
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The urgent case of Aaron, the son of Sinead and Dermot Langan, has been raised in the Dáil and Seanad, with Donegal representatives warning that children with DMD are in a race against time because the treatment is only available to children who still have mobility.
Aaron had to begin using a wheelchair earlier this year, adding further urgency to his case.
A major public rally was held on The Diamond in Donegal Town on 24th May, where a large crowd gathered under the Team Aaron banner to support Aaron and his family.
The case of 10-year-old Diarmuid O’Sullivan from Ballybofey, has also been central to the nationwide campaign.
Diarmuid’s older brother Nathan has the same condition and has had access to the drug through a UK trial for more than 10 years. His family’s case was raised in the Dáil by Deputy Pearse Doherty, who highlighted the distress of one brother having access to the treatment while Diarmuid continued to wait.
Around 150 children live with DMD in Ireland.