Nationwide surveys and other data suggest that many Americans with chronic illnesses continue to face steep financial and emotional hurdles when accessing care, despite being fully insured. A new study conducted by researchers from Johnson & Johnson sought to explore this paradox through a qualitative lens, combining an online survey (N = 146) with six virtual focus groups (N = 29). Study participants were members of Johnson & Johnson’s Patient Engagement Research Councils (PERCs) – programs comprised of U.S. residents living with various chronic diseases who share their knowledge and lived experiences to inform research and improve the understanding of patient needs. While 81% of survey respondents expressed satisfaction with their health plan, the study revealed persistent challenges related to affordability, predictability, and access. Nearly one-quarter reported difficulty affording medications covered by their insurance, and half of those with household incomes below $40,000 struggled with out-of-pocket costs. Cost unpredictability was common: 58% said actual medication costs differed from expectations, and only 23% recalled discussing cost with their provider. Emotional strain was also evident, with 26% reporting frequent anxiety related to prescription costs.
Focus group participants described coping strategies such as skipping doses, incurring debt, and reducing spending on basic needs. Some reported physical health impacts linked to financial stress. Study participants indicated strong support for reforms, including eliminating coinsurance for stable prescriptions, covering high-value medications without deductibles, replacing coinsurance with fixed copays and improving transparency through real-time cost estimates.
As qualitative research, these findings are exploratory and not generalizable to all patients. Nonetheless, they offer valuable insights into patient priorities and highlight opportunities to improve insurance design for those managing chronic conditions.
This research was funded by Johnson & Johnson Innovative Medicine and conducted in collaboration with Evidera. For full details on the study design, methods and limitations, see: Doherty B, Hooks K, Neumann U, Peters W, Zona S, Shea L. Patient perspectives on health insurance design: a mixed-methods analysis. J Mark Access Health Policy. 2025;13:0. doi:10.3390/jmahp13040000
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