The segmentation of the Argentine healthcare system in the care of patients with epidermolysis bullosa: challenges and proposals for a comprehensive model

Abstract

Epidermolysis bullosa is a rare genetic disorder characterized by extreme mucocutaneous fragility. The healthcare coverage in Argentina is divided into the public sector, social security, and the private sector. This study examines how this segmentation affects the socio-healthcare management of patients with EB, identifying barriers and challenges. A descriptive phenomenological qualitative design was employed. The sample included 91 participants: parents of minors with EB ( n = 54), adults with EB ( n = 26), and socio-healthcare professionals ( n = 11). Data were collected through semi-structured interviews and open-ended online surveys. A reflexive thematic analysis was conducted using ATLAS.ti software. Health system segmentation negatively impacts the care of individuals with EB, alongside other factors such as deficient interdisciplinary coordination, the lack of protocols for transitioning from pediatric to adult care, centralization and scarcity of specialized services, and significant disparities in access to wound-care products and treatments. Healthcare inequities exacerbate the vulnerability of individuals with EB and their families. The disparities in socio-healthcare access for individuals with EB in Argentina are closely linked to the segmentation of the healthcare system. While the National Program for Rare Diseases represents progress, there remains an urgent need to implement a national plan that ensures equitable access to treatment, interdisciplinary teams, and specialized training.

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