Statement from Cystic Fibrosis Ireland following decision to grant access to Kaftrio therapy for 35 excluded children
Date of issue: immediate
Cystic Fibrosis Ireland has today warmly welcomed the decision to grant access to Kaftrio for the 35 children age 6-11 years with cystic fibrosis who have been excluded from access to the therapy for almost a year.
In welcoming Minister Stephen Donnelly’s announcement today, Cystic Fibrosis Ireland has also urged ‘future-proofing’ to ensure that when Kaftrio is extended to children age 2-5 years, and others with CF, that protracted and stressful disputes can be avoided in the future.
Philip Watt, CEO, Cystic Fibrosis Ireland, stated:
“In quietly celebrating with all who have contributed to this positive outcome today, we particularly think of, and thank, all of the parents, friends and families of the 35 impacted children directly affected by this dispute. Their voice, their dignity and their strength over the past year has been the key factor in providing the necessary momentum for resolving a crisis that should never have occurred in the first instance. It is an honour for Cystic Fibrosis Ireland to continue to work with, and support, the Kaftrio 35 as best we can.”
He continued:
“We know today is a somewhat bitter-sweet moment for the impacted parents. Their children have been without Kaftrio for far too long – a ground-breaking drug that has been available to 140 other children age 6-11 years with cystic fibrosis during this time. We would urge that wider lessons can be discussed and learned for the drug reimbursement process itself in Ireland. The recent statements by Minister Donnelly in this context are very much welcomed.”
“In thanking the Minister, Cystic Fibrosis Ireland also takes this opportunity to urge him to ‘future-proof’ Kaftrio for the relatively small number of children who are predicted to gain access on age or eligible genotype extensions in the future. We do not want to see this dispute happening again in 12 months’ time for 2-5-year-olds with cystic fibrosis when the European Medicines Agency is likely to approve such an extension.
“In thanking VERTEX for developing Kaftrio, and in assisting in making this announcement possible, we would also urge its CEO, Dr Kewalramani, to consider making Kaftrio accessible in countries with people with cystic fibrosis who do not have access at present, including in Eastern European countries such as the Ukraine and in countries where health services are less developed in Africa, Asia and South America.”
ENDS
Philip Watt, CEO, Cystic Fibrosis Ireland, is available for interviews, tel.: 087 6370557