Cystic Fibrosis Developments in 2020/21: A Patient Group Perspective

Written by Philip Watt, CEO, Cystic Fibrosis Ireland

50, 51 – HPN January 2022 Digital

Due to continued very positive developments in accessing new and innovative medications that tackle the underlying case of cystic fibrosis and steady improvements in specialised hospital centres and care over the past decade, more people with Cystic Fibrosis (CF) are reaching adulthood in Ireland than ever before. Almost 60% of the CF patients in Ireland (circa 1400 in total) are now 18 years or over. This is compared with 54% in 2009. However, over the same decade, percentage of adults with CF aged 40 years or over increased from 4% to almost 12%.

CF is a genetic, chronic and fatal multi organ disease that primarily impacts on the lungs and digestive systems. The indigenous population in Ireland has the highest incidence of CF in the world. However the overall incidence in Ireland has declined to UK levels in recent years. This is because of inward migration/greater diversity in Ireland’s overall population that expanded in the 2000’s. Recent developments related to CF care has given renewed hope that CF is now a more manageable disease. It is anticipated that predicted survival ages will continue to increase.

The encouraging figures on CF patient demography are available because of the existence of Cystic Fibrosis Registry of Ireland. It was established by the national patient group, Cystic Fibrosis Ireland (CFI) in 1999. It became an independent entity, in line with international good practice.

Cystic Fibrosis Ireland

Cystic Fibrosis Ireland takes this opportunity to thank all the dedicated healthcare workers; our CF hospital centres; the HSE and the Minister for Health, Stephen Donnelly TD for their ongoing support for CF care. We thank our many supporters and friends who have worked so hard to sustain our fundraising over the past 2 years. It is heartening that in a survey undertaken by UCD, 80% said they looked to CFI for accurate information and also support in 2020.

Read our January magazine HERE

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