CFI Annual report for 2022 below. 

• Cystic Fibrosis Ireland 60th annual report shows the most dramatic improvements in CF care have taken place over the past decade (2013-2023) 
• Children with CF born 2016-2021 are now expected to live to nearly 52 years of age, compared with the 1960’s when most children died before reaching secondary school – many died in infancy in 1963 - the year the association was established 
•  Almost 77% of those with CF in Ireland are now on an innovative drug therapy that treats the underlying cause of CF (mostly the drug Kaftrio) 
• Conference to hear CF now a much more manageable disease, but still with many challenges remaining, including finding a cure. 

CFI’s Annual Report for 2022 is published today ahead of our 60th annual conference on Saturday 1st April, Dunboyne Castle Hotel, Dunboyne, County Meath.

The report shows the most profound improvements in CF care have occurred in the past decade (2013-2023), building on the progress of previous decades. 

In particular, progress over the past decade has coincided with the introduction of series of drug therapies that treat the underlying cause of CF and not just the symptoms. The first of these drugs was Kalydeco in 2013, followed by Orkambi in 2017 and the most recent and most powerful, ‘Kaftrio’ in 2020. 

The decade has also seen the upgrading of CF units in hospitals, new born screening for CF being fully introduced and the introduction of an overall model of care for CF by the National Clinical Programme for CF. Gaps in staffing levels remain and the long promised adult in patient unit in Beaumont has not commenced.

While CF remains a very challenging disease, it is now increasingly recognised as a more manageable long- term disease that has been transformed by new drug therapies, especially Kaftrio and by improved CF hospital facilities. 

The pace of progress is reflected in the predicted median survival ages of children: 

• Those children with CF born between 2011 and 2015 are predicted to live to 39.9 years of age. 
• Those children with CF born between 2016 and 2021 are predicted to live to 51.8 years of age. 
• The number of adults with CF over 40 years of age in 2021 is now 13.4%, an increase of 4.4% since 2010 

(Source- CF Registry of Ireland infographic on p12 CFI Annual Report) 

Our work with Patients 

The CFI annual report for 2022 published today highlights our work with our patients in 2022 (page 6). 

This includes the successful advocacy for the 35 children who were excluded from Kaftrio in May 2022 (dispute ended in March 2023). 

€298,420 was provided in grant payments to our members for exercise equipment, counselling assistance, social and distress payments, PPE and assistance for funeral costs and fertility treatment. Over €14,000 was provided for those with CF in Ukraine and living as displaced persons in Ireland. 

Almost €110,000 was provided by CFI for CF related health research in 2022.

Since 1963 

2023 marks the 60th anniversary of Cystic Fibrosis Ireland (CFI) which was established by parents in 1963. CFI is among the first established patient groups in Ireland and Europe, formed the same year as the Irish Cancer Society and pre-dating the Irish Heart Foundation by some 3 years. We are the oldest CF Association in Europe we understand. 

In the early 1960’s children born with CF were generally not expected to live to see secondary school, many died as infants. There were only rudimentary and expensive antibiotics to treat infections. Until the 1970 Health Act – those without medical cards (most CF families) had to pay all their doctor fees and medications. CFI was a leading campaigner for the Long Term Illness Card (1971). 

The timeline of key developments since 2001 and our contribution is reflected on page 8 and 9 of our annual report for 2022 published today. 

CFI welcomes Minister Roderic O’Gorman TD who will open our 60th annual conference on Friday 31st March in the Dunboyne Castle Hotel at 7pm. We further welcome Professor Charles Gallagher and Professor Ed McKone of SVUH as our keynote speakers and Dr Alexandra Quittner as our keynote international speaker, from the prestigious Joe Di Maggio Children’s hospital Florida USA.

Note 

Median predicted age of survival refers to a median (the mid-point of a number set). It is anticipated that half of those born between 2017 and 2021 will reach 51.8 years of age