The EACH/PIC Coalition submitted comments to the Oregon PDAB in providing input into the 2026 cost review process.
The letter stated:
“We appreciate the opportunity to provide comments as the board continues its work on the 2026 drug affordability review process. We share the board’s goal of improving affordability for Oregonians and believe there is a critical opportunity to strengthen the process by more fully centering patient experience and ensuring that policy approaches align with how patients actually experience affordability challenges.”
“As the board begins the 2026 review cycle, we strongly encourage a more deliberate focus on patient-reported experiences as the foundation for affordability determinations and policy development.”
“Our Patient Experience Project: Patient-Reported Affordability & Unaffordability Survey 2.0 found that affordability is not defined by the price of a drug alone, but by whether patients can consistently access their medications within the context of their overall financial and health circumstances. Patients repeatedly identified insurance coverage, cost-sharing structures, and access to financial assistance as the primary drivers of affordability and access.”
“Specifically, patients who reported stopping or not initiating treatment overwhelmingly cited insurance-related barriers, including coverage denials, utilization management, and high or unstable out-of-pocket costs, rather than drug price alone. In addition, many patients experienced significant variability in their out-of-pocket costs for the same medication over time, contributing to “affordability shifting” and, in some cases, loss of access altogether.”
“These findings reinforce a consistent theme we have raised in prior comments: patient affordability is largely determined by insurance design and access-related factors, not directly by the price of a medication. As a result, policy approaches that focus primarily on price are unlikely to resolve the challenges patients report and may fail to improve real-world affordability.”
“To support a more effective and patient-centered 2026 review process, we encourage the board to strengthen its approach to patient engagement and data collection. Without these improvements, there is a significant risk that the board’s analysis will continue to lack the context needed to identify effective policy solutions.”
“Traditional survey methods that rely on closed-ended or yes/no questions do not capture the context necessary to understand affordability. As our research demonstrated, it is essential to understand why patients report a medication as unaffordable, including the role of insurance barriers, cumulative healthcare costs, and disruptions in financial assistance. Equally important is investing in developing patient-facing questions that are designed for clarity and opportunities to share their full experiences.”