The Lived Experience of Health Insurance

Abstract

People are carrying tens of billions of dollars of medical debt, much of it in collections. We delay going to the Emergency Department while having a heart attack because it may cost too much. Doctors try to help insured patients find the best coupon to offset the high copayment for a necessary prescription drug. For inexpensive drugs, insurers make a profit by clawing back copayments that exceed what the drug costs. People who are already arbitrarily disadvantaged because of race, gender, health status, LGBTQ status, obesity, etc. are disproportionately burdened by all of this. No one would design a system to end up this way. This article, through a series of case studies, does a close analysis of the healthcare insurance system from the perspective of people who use it, revealing a breathtakingly opaque, counter-intuitive, and burdensome muddle. The ACA did much good, as have subsequent reforms, but we can do better. I argue that we do not appropriately center the lived experience of people when we design and reform healthcare financing and show how doing so can ameliorate much of the harm that is currently occurring. Centering people does not pose an inherent conflict with conservative or liberal values. Bioethical principles such as autonomy, justice, integrity, and respect for dignity ought to be reflected in any plan. These principles can only be pursued by acknowledging how people truly experience systems they must interact with.