For the 129 million Americans living with at least one chronic condition in 2024, current insurance designs too often fail to meet day-to-day needs. Chronic disease patients require consistent treatment, ongoing provider engagement and uninterrupted access to medications. However, some U.S. insurance designs employ restrictive utilization management, such as excessive step therapy and prior authorization, along with high patient cost burdens to mitigate ‘moral hazard’, the economic notion that patients may overuse medical treatments because insurance pays a share of the full cost. In reality, empirical evidence indicates that contemporary cost-sharing mechanisms may not be value-driven and too often create barriers to care for patients with established chronic conditions. Prior authorization and step therapy have been shown to delay needed treatment and worsen outcomes, increasing the risk of disease progression and increasing health care costs.
Despite being ‘insured’, these patients may skip, stretch or abandon medications due to high out-of-pocket (OOP) cost obligations. One-third of participants in a recent mixed-methods study conducted by J&J (n=145) report feeling financially overwhelmed on a regular basis. As illustrated below, participants in the study focus groups highlight the emotional and physical impact of this burden on their health.
Findings from this research are presented at the 2026 Nexus conference of the Academy of Managed Care Pharmacy (AMCP), alongside a second patient-centered qualitative study on the perspectives of patients with employer-based coverage. Data were collected through an online survey and virtual focus groups. Participants were recruited from the Patient Engagement Research Council (PERC), a program led by Johnson & Johnson that engages a diverse group of patients with chronic health conditions to provide insights through structured research activities to help inform policy decisions.
Chronic disease patients in both studies expressed concerns with health insurance. Chronic disease patients in employer plans felt that the plans were designed and chosen for healthy people and not for those with complex health conditions. Some participants in the study reported a lack of details about coverage and expressed hesitation to engage their employer due to fear of job loss or discrimination. Other patients found that limited information is provided to plan members after enrollment, and most stated that employers do not ask about the employee’s experience with their insurance plan.
Chronic disease patients were clear about what they need from insurance: They seek features such as fixed co-pays, income-based caps on patient out-of-pocket (OOP) costs and the elimination of coinsurance on maintenance medications. Approximately 82% said they’d accept modest premium increases in exchange for reduced OOP costs. Employers can support their workforce by offering tailored health insurance options that address diverse health needs and creating opportunities for open, informed discussions—either directly with them or through neutral third parties knowledgeable about chronic diseases and insurance.
Reforms to benefit design should focus on addressing the challenges faced by many Americans living with chronic disease. That means:
- Limiting utilization management that disrupts treatment continuity.
- Replacing co-insurance obligations with fixed co-pays and OOP caps to make costs more predictable and manageable.
- Surveying employees with chronic disease to understand actual preferences on insurance features and experiences with their insurance.
- Improving transparency so patients understand their coverage and feel safe asking questions.
Insurance designs should prioritize treatment continuity and meet the needs of patients that rely on chronic treatments.
The research was funded by Johnson & Johnson. For full details on the study designs, methods and limitations see:
Neumann U, Doherty B, Peters W. Patient Perspectives on Health Insurance Design: Experiences of Beneficiaries with Chronic Disease. Johnson & Johnson Innovative Medicine. Poster presented at: Academy of Managed Care Pharmacy (AMCP) Nexus 2025; October 27-30, 2025; National Harbor, MD.
Doherty B, Neumann U, Falope Y, Genin R. Patient Perspectives on Employer-Based Health Insurance: Experiences of Employees with Chronic Diseases. Johnson & Johnson Innovative Medicine. Poster presented at: Academy of Managed Care Pharmacy (AMCP) Nexus 2025; October 27-30, 2025; National Harbor, MD.