Cystic Fibrosis Ireland Statement

Cystic Fibrosis Ireland questions whether a CF drug for 35 children will be fairly assessed by the National Centre for Pharmaco-Economics (NCPE) following recent newspaper comments

Date of issue: Monday July 11 2022

Cystic Fibrosis Ireland (CFI) has today questioned whether a drug therapy for 35 children with cystic fibrosis (CF) will be fairly assessed following comments from the National Centre for Pharmaco-Economics (NCPE) to a Sunday newspaper.  

These statements have been made in advance of the NCPE undertaking a possible Health Technology Assessment (HTA) of the extension of Kaftrio to 35 children with CF aged 6-11, a real possibility that has been flagged by the HSE on several occasions.  

Philip Watt, CEO of CFI stated:

“Following recent statements to a Sunday newspaper, our confidence is very shaken that the NCPE has the capacity to act as fair judges in the pricing/reimbursement of Kaftrio to 35 children with CF.  

“We would challenge the NCPE to take part in a public debate with Cystic Fibrosis Ireland on their recent statements and why 35 children continue to be denied a life-changing drug, when 140 other children with CF have gained access.” 

Philip Watt stated that the NCPE statements are deeply problematic from the following perspective: 

“There is no recognition from the NCPE in their statements that these drugs, known as CFTR modulators, have revolutionised CF care in Ireland as per the CF Registry of Ireland annual report in 2020.  

“Instead, the NCPE contend there is ‘no mortality data’. The NCPE will know that Kaftrio has only been on the market a couple of years, so there would be very limited mortality figures available. There is, however, overwhelming data on the overall health impact of Kaftrio from both studies in Ireland and internationally, and there is also emerging very positive mortality data. This data can be provided by CFI.  

“The NCPE seems to be unaware of Minister Donnelly’s statement to Deputy Kenny ‘Kaftrio has been a life-changing drug for cystic fibrosis sufferers, and I want to see it made available to everyone who needs it’.”  

Philip Watt further contended: 

“There is no recognition in the NCPE published statements of the very significant savings to the health system arising from less hospital admissions and exacerbations, less reliance on other expensive therapies, and delaying or removing the need for lung transplants.

“Further, there is no recognition in the NCPE statements of the savings that could be made by further reform of our drugs reimbursement system. Many reports of the system in Ireland have pointed to wastage, including the continued use of outmoded or ineffective medicines, and this is an area that clearly needs more reform.” 

Philip Watt concluded:  

“We believe the Government should step in without further delay and approve Kaftrio for the 35 children. Further it should undertake a full review of the NCPE in light of these recent statements.”

ENDS

Issued on behalf of Cystic Fibrosis Ireland by:

Don Delaney, director, d2 communications, tel.: 01 910 8987 / 087 793 3249

Philip Watt, CEO, Cystic Fibrosis Ireland, is available for interviews, tel.: 087 6370557