Roadmap to Global Cystic Fibrosis Care.
Samya Z Nasr1, Salma Fleifil1, Terez B Kamel2
1University of Michigan, Michigan Medicine, Ann Arbor, Michigan, USA.
Pediatric Pulmonology
|November 21, 2025
Summary
Cystic fibrosis (CF) care is unequal globally. This roadmap proposes strategies, including partnerships and advocacy, to improve diagnosis and treatment access for all people with CF, especially in low- and middle-income countries (LMICs).
Area of Science:
- Global Health
- Pulmonology
- Genetics
Background:
- Cystic fibrosis (CF) affects 160,000 worldwide, with significant disparities in care between high-income countries (HICs) and low- and middle-income countries (LMICs).
- People with CF in LMICs face barriers to diagnosis and treatment, leading to poorer outcomes and reduced survival rates.
Purpose of the Study:
- To outline a global roadmap for advancing CF care by addressing challenges and bridging the gap between HICs and LMICs.
- To identify actionable strategies for improving diagnosis, treatment, and survival for people with CF (pwCF) globally.
Main Methods:
- Literature review and analysis of global CF registries.
- Examination of outcomes from international collaborations between CF centers in HICs and LMICs.
- Identification of key components for improving CF care, including capacity building, training, registry integration, multidisciplinary care, medication access, and advocacy.
Main Results:
- Significant disparities persist in access to diagnosis, specialized care, CFTR modulator therapies, and patient registries.
- Collaborations focusing on education, guideline adaptation, telemedicine, and family engagement have improved CF care in some LMICs.
- Advocacy is crucial for increasing access to therapies and newborn screening in resource-limited settings.
Conclusions:
- CF is a global health issue requiring an equitable, unified global response.
- Strong partnerships, investment in healthcare systems, and prioritization of equity and advocacy can reduce global CF outcome disparities.
- Coordinated international efforts are essential to ensure equitable access to quality CF care and improve survival and quality of life for all pwCF.
Keywords:
cystic fibrosisglobal approach to CF carehighly effective modulatorshigh‐income countrieslow‐middle income countriesmultidisciplinary clinicsquality improvementMore Related Videos
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