Hope for families as HSE moves to approve Duchenne drug givinostat: Prime Time speaks to campaigners and Minister for Health
Families affected by Duchenne muscular dystrophy received welcome news this week, as the HSE drugs group recommended approval of givinostat, a treatment that can help slow the progression of the condition.
On Thursday night's Prime Time (RTÉ One, 11 June), Una Ennis, mother of nine-year-old Archie, spoke about what the recommendation means for the approximately 120 boys living with Duchenne in Ireland, and why the coming weeks matter so much. "Time is muscle," Una told presenter Fran McNulty. Every day without treatment means further loss of muscle function, and some boys who were walking a year ago have since lost that ability while waiting for access.
The decision now goes before the HSE senior leadership team. Campaigning families are asking that eligibility criteria match those in Northern Ireland, where the treatment is available to all boys who can walk or stand with or without support.
Minister for Health Jennifer Carroll MacNeill, speaking to Miriam O'Callaghan, said she hopes the drug can reach families within weeks rather than months. She also confirmed an end-to-end review of Ireland's drug approval process, expected to take around six months, alongside plans for an early access programme for rare disease medicines.
The segment also heard tributes to the cross-party support behind the campaign, including TDs Pádraig O'Sullivan and Teresa Costello.
You can watch the full discussion at the link below. For the families who have campaigned so tirelessly, the message is simple: the approval is welcome, but the urgency remains.
