Fight for DMD drug approval is brought to Dáil

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Together with representatives from Muscular Dystrophy Ireland, Bianca was joined by fellow Duchenne parents at Leinster House last week where they stated their case to have formal approval of the drug Givinostat

Ronan Fagan

Published: Sun 22 Jun 2025, 12:44 PM

An Athlone mother has voiced her frustration as she continues to wait for formal approval of a drug which would improve the lives of her two sons who were diagnosed with Duchenne Muscular Dystrophy (DMD).

Along with representatives from Muscular Dystrophy Ireland and other Duchenne parents, Bianca Benson travelled to Leinster House on Wednesday of last week where she met with Department of Health officials and impressed upon them the urgent need to make Givinostat available to her two sons, Noah and Rowan.

Noah (11) and Rowan (9) Benson-Gately were diagnosed with DMD in January 2020 and in the intervening time, the genetic disorder has had a profound effect on their lives and that of their parents Bianca and Dysart's Sean Gately. DMD is a genetic disorder characterised by progressive muscle degeneration and weakness.

Bianca is hoping that the approval process can be "accelerated" as the drug is a "proven game changer" but for the moment all parents of boys with DMD are being left "in limbo".

According to Bianca the use of Givinostat will lengthen six months of physical deterioration out to a two-year period, but she is frustrated with the delay in having the drug approved for use in Ireland.

"We are so far behind our European counterparts in terms of drug approval here in this country, it is just very frustrating. While we had positive discussions with the Minister for Health's representatives in Leinster House it does appear that there will be a long process before Givinostat may be approved for use," Bianca said.

Givinostat is manufactured by the Italian pharmaceutical company Italfarmaco who, Bianca said, will make a submission to the HSE on July 28, in support of the drug's use in Ireland.

Bianca described the Leinster House meeting as an "emotional" occasion.

"I met with so many families who are living with DMD. It is so hard on all the families who are impacted. The occasion was tinged with a bittersweet feeling as we look for a positive breakthrough yet continue to live our lives as best we can," Bianca said.