The EACH/PIC Coalition is pleased to release results from Version 2.0 of our Patient Experience Survey: Prescription Drug Affordability and Unaffordability, an updated, patient-led analysis of how people actually experience affordability in their daily lives.
This report builds on the initial findings of our pilot survey and reflects responses from patients living with chronic and serious conditions across income levels, insurance types, and disease areas. The goal of this work is straightforward: to better understand why patients report medications as affordable or unaffordable, and to ensure policy solutions are grounded in the realities patients describe, not assumptions based on price alone.
What We Asked and Why It Matters
Across the country, drug affordability discussions often center on the price of individual medications. Yet patients consistently tell us that affordability is far more complex. Insurance rules, cost-sharing volatility, access to financial assistance, and the ability to stay on a treatment that works all shape whether patients can maintain access over time.
Our Patient Experience Survey was designed to capture that missing context. Unlike simplified yes/no affordability surveys, this tool combines quantitative data with open-ended patient narratives, allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care.
Affordability Is Not Just About Price
The updated findings reinforce several critical themes:
- 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. Many patients experienced significant out-of-pocket cost changes 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.
Taken together, these findings underscore a central conclusion: policies that focus narrowly on the price of individual drugs risk missing the root causes of patient hardship.
Policy Recommendations Informed by Patient Experience
Based directly on what patients reported, the survey points to policy approaches that are more likely to improve real-world affordability and access:
- Make patient costs more manageable and predictable, including caps on out-of-pocket spending and mechanisms that smooth costs over the year.
- Protect and expand access to financial assistance, and ensure assistance counts toward deductibles and out-of-pocket maximums.
- Limit insurance practices that disrupt care, such as non-medical switching and excessive utilization management.
- Address structural incentives in the healthcare system that raise patient costs without improving care, including misaligned PBM compensation and lack of transparency.
These recommendations reflect patient-identified needs and prioritize continuity of care alongside affordability.
Read and Share the Report and Findings
To support broad use of this research, we are releasing two companion resources:
- Full Report: Patient Experience Survey: Prescription Drug Affordability and Unaffordability (Version 2.0)
- Findings & Policy Recommendations Brief
What Comes Next
This work is ongoing. EACH/PIC will continue expanding patient engagement, sharing these findings with policymakers, and advocating for reforms that address the patient-reported drivers of hardship.
Affordability efforts work best when they start, and end, with patients. We invite policymakers, advocates, and partners to use this data, engage with our coalition, and work collaboratively toward solutions that improve access, reduce harm, and reflect the realities patients live every day.