Stories, Systems, and Survival: Photovoice Insights on Structural Racism and Cystic Fibrosis Care

People who identify as Black, Indigenous, and People of Color (BIPOC) represent an increasing proportion of patients with cystic fibrosis (CF). Despite the transformative potential of highly effective modulator therapies, BIPOC people with CF (pwCF) experience disproportionately worse outcomes, including lower lung function and increased risk of hospitalization. Social and structural conditions exacerbate these inequities. To better understand these dynamics, this study used photovoice, a community-based participatory research method, to explore how BIPOC pwCF describe the influence of systemic and structural inequities on their health and disease management.

Using the photovoice method, participants documented their lived experiences through photography and facilitated group discussion using the See, Happening, Our, Why, Exist, Do, or SHOWED method. Group generated prompts focused on CF-related experiences, barriers, and supports. Transcripts were analyzed using the Sort and Sift, Think and Shift^© method.

Participants described challenges unique to BIPOC pwCF, including delayed diagnosis of CF, limited CF knowledge among nonspecialist providers, and systemic barriers such as geographic isolation, language differences, and ineligibility for modulator therapies. Many described the need to self-advocate, seek alternative resources, or forgo local care in favor of distant CF centers.

BIPOC pwCF face systemic barriers across the care continuum that reflect a gap between the promise of modern CF care and equitable access to it. Participants' narratives underscore the enduring consequences of viewing CF as a "White disease" and the urgent need for structural reform to ensure that advances in CF treatment are accessible and effective for all patients, regardless of race or ethnicity.

Cystic Fibrosis Foundation.