Broader surveys and nation-wide data suggest that many Americans with chronic illnesses still face steep financial and emotional hurdles when accessing care, despite having health insurance. A new mixed-methods study published in the Journal of Market Access & Health Policy sheds light on this paradox, revealing how insurance design can fail the very people it’s meant to protect the most–and what chronic disease patients believe should change.
Conducted by researchers from Johnson & Johnson and Evidera, the study combined a 146-person survey with six in-depth focus groups involving 29 patients living with chronic conditions. Patients spanned 15 disease areas and a range of insurance types, including Medicare and employer-based plans. The participants were part 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. This was qualitative research, intended to generate in-depth insights. While findings cannot be generalized to all patients, they offer a valuable window into lived experiences that often go unheard in policy debates.
Satisfaction and strain
At first glance, the results seem optimistic: 81% of survey respondents said they were satisfied with their health plan. But deeper analysis revealed a troubling disconnect between perceived value and lived experience.
- Affordability gaps: Nearly one-quarter of patients struggled to afford medications covered by their plan. Mechanisms like co-insurance and deductibles were the most cited barriers.
- Income-based disparities: Half of respondents earning less than $40,000 annually could not afford their out-of-pocket (OOP) costs, even with insurance.
- Coverage confusion: 58% of patients found their actual medication costs differed from expectations, and only 23% recalled discussing cost with their provider.
- Emotional toll: Nearly one-third of patients felt overwhelmed by insurance costs, and 26% reported frequent anxiety or stress related to managing prescriptions.
Real-life consequences: Debt, abandonment and declining health
Research participants shared powerful stories of how insurance design shaped their lives in deeply personal ways. Participants shared experiences of prescription medication affordability due to high deductibles and cost exposure, with some having to skip doses or abandon treatment altogether because their out-of-pocket cost burden was simply unaffordable.
The patient ask: Common-sense reform
Despite these challenges, patients in the study were pragmatic and constructive in their suggestions. The research explored eight potential reform ideas, all of which received strong support from survey respondents, with focus group discussions providing additional detail.
Fairness, transparency and predictability
For many participants, general satisfaction with insurance may stem more from having some coverage than from having adequate coverage. Patients with chronic disease can feel “insured but not covered,” too often facing unpredictable costs, emotional strain, and barriers to care. Yet they are not asking for perfection or a revolution–they’re asking for fairness, transparency, and predictability. Their voices offer a roadmap for common-sense benefit design reform. By eliminating coinsurance for stable medications, capping costs based on income, and improving transparency, insurers can better serve those who rely on coverage the most. As policymakers and payers consider the future of insurance design, this research reminds us that the best solutions start with listening to the people living the reality every day.
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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