Children’s Health Ireland (CHI) has been recognised by Italfarmaco, the manufacturer of Givinostat, for achieving the fastest turnaround time in Europe between the treatment becoming available in Ireland and its first prescription.
This is a significant achievement, made possible through the determination of families who campaigned for access to the treatment, the commitment of the CHI multidisciplinary team, and collaboration with Muscular Dystrophy Ireland (MDI).
To date, 40 patients have been seen in clinic, with 34 boys currently receiving Givinostat.
Photo L-R: Dr. Eva Forman, Hannah McLoughlin, Dr. Declan O'Rourke.
Specialist nurse Hannah McLoughlin said:
“We are delighted that we were able to roll this out for the parents and children so quickly and efficiently. We currently have 34 boys receiving Givinostat. These patients were all commenced on Givinostat within 6 weeks of the medication becoming approved in Ireland. A big credit to the parents of these boys for all the hard work and lobbying they did to get Givinostat over the line so quickly. A big thank you to, Dr Forman, Dr O'Rourke and Prof McDonald for their support with carrying out the screening clinics. A special mention to Dr Forman who is continuing to oversee the care of these boys and blood monitoring while on Givinostat. Thank you to Sinéad from MDI for attending all of our clinics and supporting the families and boys.”
Dr Forman said:
“This achievement reflects the commitment and collaboration of our entire multidisciplinary team. The expertise and dedication of our specialist nurse Hannah, working closely with the medical, nursing and administrative teams, with support from Muscular Dystrophy Ireland, enabled us to make this innovative treatment available to our patients faster than anywhere in Europe. We are very proud of this achievement and how the whole team came together to make this possible for our patients.”
MDI’s Clinic Liaison Officer, Sinéad O’Brien, attended each dedicated Givinostat clinic, providing information and support to families alongside the clinical process. The initiative is designed to connect families with practical support and information while they attend specialist hospital appointments.
The rapid introduction of Givinostat demonstrates what can be achieved through collaboration between families, specialist healthcare teams and patient organisations. MDI is proud to have contributed to this important milestone for boys with Duchenne muscular dystrophy and their families.
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