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Navigating The U.S. Health Insurance Landscape For Children With Rare Diseases: A Qualitative Study Of Parents' Experiences, Tai L. S. Pasquini, Sarah L. Goff, Jennifer M. Whitehill

Health Promotion and Policy Faculty Publication Series

Parents of children with rare diseases often face uncertainty about diagnosis, treatment, and costs associated with healthcare for their child. Health insurance status impacts each of these areas, but no U.S. study has explored parents' perceptions of the health insurance impacts on their child's care. This study aimed to qualitatively explore how these parents navigate the complex health insurance system for their children and their experiences in doing so. Methods Semi-structured interviews were conducted with parents of children with metachromatic leukodystrophy (MLD) and spinal muscular atrophy (SMA), chosen for specific disease characteristics and orphan drug status. Participants were recruited via …