Gaps in benefits, awareness, and comprehension that leave those with long COVID vulnerable.

Abstract

The COVID-19 pandemic has left many suffering from long COVID, an episodic and debilitating chronic condition affecting people's ability to work and manage medical expenses. Though the Biden Administration has committed to conducting research and building support programs to alleviate the strain on those affected, in practice, static eligibility criteria for unemployment and disability benefits, patchy insurance coverage, and insufficient paid leave programs have left many people vulnerable. Given the magnitude of long COVID and the dearth to date of large-scale studies about its financial consequences, a focused qualitative analysis of lived experiences is warranted to understand and highlight gaps in the policy landscape. We conducted in-depth semi-structured interviews from 2020 to 2022 with 25 people with experience of long COVID living predominately in the Midwest. Our inductive analysis revealed ways people became financially exhausted by uncertain medical care costs and precarious employment that left them trying, often alone, to access benefits. People described both experiences with workplace benefits and attempts to access federal benefits to address unstable employment situations created by protracted and uncertain functional impairments. We explore pre- and post-pandemic era unemployment, disability, and insurance policies and offer recommendations for better supporting people with long COVID.