New Patient-Led Research Finds Insurance Barriers and Cost Instability Are Primary Drivers of Patient Prescription Drug Affordability Challenges
EACH/PIC Urges Policymakers to Rethink Policies that Risk Worsening Access and Focus on Patient-Reported Hardships
March 23, 2026 — National research from the Ensuring Access through Collaborative Health (EACH) and Patient Inclusion Council (PIC) Coalition finds that prescription drug affordability policies focused primarily on the price of individual drugs are misaligned with how patients actually experience cost burdens and may fail to improve access or reduce hardship.
The Patient Experience Project: Patient-Reported Affordability & Inaffordability Survey 2.0 found that patient-reported affordability is far more complex than price alone. Findings show affordability is largely dictated by insurance benefit design, cost-sharing volatility, and financial assistance access, compounded by income, cumulative costs, and evolving life experiences. These barriers ultimately shaped whether patients were able to sustain access to their treatments over time.
The findings come as federal and state policymakers advance drug affordability initiatives centered on price-setting mechanisms aimed at benefitting insurance companies and relying on them to pass their savings on to patients. The coalition urges policymakers to utilize the findings to focus on health reforms that better improve affordability by addressing patient-reported hardships.
“If the goal is to help patients, health reforms have to start with patient problems,” said Tiffany Westrich-Robertson, EACH/PIC Coalition Founder and a person living with axial spondyloarthritis. “Our findings show that insurance rules and access barriers are the root causes behind patient-reported prescription drug affordability challenges. Policymakers must either pursue reforms that genuinely improve patient affordability or be honest that the goal is to save money for systems, not patients.”
The research was designed and led by patient research partners (PRPs) from the PIC and a data scientist to capture the real-world context behind why medications are considered affordable or unaffordable. Findings from the national survey of 537 patients across 94 diagnoses and 225 prescription medications include:
- Affordability is personal and context-driven. Patients defined affordability as the ability to consistently obtain their medication within their essential household budget, not as a fixed dollar amount. Reported affordability thresholds varied widely across income levels and life circumstances.
- Insurance is a primary determinant of affordability and access. Patients who stopped taking a medication or never started treatment overwhelmingly cited insurance-related barriers, such as coverage denials, utilization management, or inconsistent application of financial assistance, rather than drug cost alone.
- Patients’ share of costs are often unstable over time because of insurance changes. Many patients experienced significant “out-of-pocket cost shifting” for the same medication, contributing to “affordability shifting” and, in some cases, loss of access altogether.
- Financial assistance plays a decisive role. Patients with consistent access to financial assistance were far more likely to report their medication as affordable, while disruptions or exclusions from assistance programs frequently triggered affordability challenges.
- Treatments are not interchangeable. Patients repeatedly emphasized the importance of remaining on effective, preferred therapies. Non-medical switching driven by insurance design was associated with disease flares, side effects, and worsened health outcomes.
- Efforts to improve health equity must focus on patient-reported hardships. Patients of color were more likely to report on brand and generic than specialty drugs and experienced affordability challenges at higher rates than non-Hispanic, white respondents.
The survey findings indicate clear areas where policy changes could more directly address the drivers of patient-reported affordability challenges. Rather than focusing narrowly on price controls that benefit payers, the results point to reforms that better align with how patients experience cost burdens and access barriers:
- Making patient costs more manageable and predictable through out-of-pocket protections, lower deductibles, reasonable annual maximums, and cost-smoothing mechanisms that reduce large, front-loaded expenses.
- Improving access to financial assistance and ensuring copay support can count toward deductibles and out-of-pocket maximums so assistance meaningfully reduces patient cost burden.
- Addressing insurance-driven access barriers by limiting non-medical switching, improving transparency around coverage rules, strengthening appeals processes, and increasing oversight of utilization management practices that disrupt continuity of care.
- Realigning system factors that contribute to patient hardship by improving transparency and addressing supply chain practices that can increase patient costs without improving care.
“Medicines don’t work if patients cannot access them,” said Westrich-Robertson. “Short-sighted solutions that generate headlines but overlook what patients actually face won’t improve affordability. We urge policymakers to pursue health reforms that reduce what patients pay out of pocket, protect access to the treatments that work, and address the insurance barriers that repeatedly stand between people and their care.”
The report and policy brief can be found on the EACH/PIC Coalition website: www.eachpic.org.
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The Ensuring Access through Collaborative Health (EACH) and Patient Inclusion Council (PIC) is a two-part coalition that unites patient organizations and allied groups (EACH), as well as patients and caregivers (PIC), to advocate for drug affordability policies that benefit patients.
For media inquiries or to schedule an interview, contact:
Desiree Richmond, desiree@aiarthritis.org