Across the country, policymakers are working to address prescription drug affordability. Yet too often, these efforts focus narrowly on the price of individual drugs without addressing the real-world barriers patients identify as driving hardship and loss of access.
Updated findings from EACH/PIC’s Patient Experience Survey: Prescription Drug Affordability and Unaffordability (Version 2.0) make one thing clear: current approaches are falling short because they fail to collect meaningful data that explains why a patient can or cannot afford their prescription. Citing ‘cost’ is not enough. Patients do not experience affordability as a single price point. They experience it as the ability to stay on the treatment that works without destabilizing their overall finances. That experience is shaped by insurance design, cost-sharing volatility, access to financial assistance, and continuity of care.
What’s Not Working
- Affordability is being defined too narrowly. Many affordability initiatives rely on simplified assessments or price-based thresholds that do not reflect how patients make decisions or experience access. Patients in the survey reported affordability challenges at every income level and across a wide range of out-of-pocket costs. Some paying very little out of pocket still reported their medication as unaffordable due to insurance rules, instability in coverage, or fear that assistance would disappear.
- Insurance-driven barriers are not being addressed. When patients stopped taking a medication, never started treatment, they overwhelmingly pointed to insurance-related challenges, not drug price alone. Coverage denials, utilization management, non-medical switching, and inconsistent application of financial assistance repeatedly emerged as drivers of lost access. Policies that do not address these barriers risk leaving the underlying problem untouched.
- Cost volatility undermines access and adherence. Many patients experienced significant changes in out-of-pocket costs for the same medication over time. This “out-of-pocket/OOP cost shifting” contributed to sometimes extreme “affordability shifting” (the same person reporting at least one OOP cost “affordable” and at least another OOP cost as “unaffordable” for the same drug over time), which then resulted in “access shifting” (same person who had access losing access at another point in time). Current policies rarely address this instability, even though predictability is central to whether patients can remain on therapy.
- Treatments are being treated as interchangeable. Patients emphasized that finding a therapy that works is often the result of years of trial and error, particularly for those with chronic conditions or comorbidities. Insurance-driven switching away from effective therapies caused disease recurrence, side effects, and worsened outcomes. Policies that prioritize savings without protecting treatment continuity risk causing harm.
How Policymakers Can Better Serve Patients
The Patient Experience Survey was designed not only to identify problems, but to inform solutions grounded in what patients say they need. Based directly on survey findings, the report offers the following policy recommendations:
Make Patient Costs Manageable and Predictable
- Directly Address Patient Costs: Limit patient cost exposure through caps on out-of-pocket spending, lower deductibles, reasonable annual maximums, and limits on premium increases tied to inflation. These protections help ensure patients can anticipate and plan for their medication costs rather than face sudden or unmanageable expenses.
- Implement Cost-Smoothing or Payment Plans: Allow patients to spread out-of-pocket costs evenly over the course of the year instead of concentrating expenses at the beginning of coverage periods. Cost-smoothing mechanisms can reduce financial shock, improve adherence, and support continuity of care for patients managing chronic conditions.
Provide Support to Avoid Catastrophic Costs
- Expand Access to Financial Assistance Programs: Expand and protect state and federal Patient Assistance Programs (PAPs) for individuals with low incomes, disabilities, or those who lack insurance coverage. Increase awareness and enrollment in manufacturer copay assistance for those commercially insured.
- Those administering patient financial assistance programs should also simplify application processes and ensure patients are aware of available resources through public education campaigns that include outreach to healthcare providers.
- Streamline and Protect Copay Support: Ensure that copay assistance counts toward deductibles and out-of-pocket maximums. Patients facing accumulator policies, where assistance doesn’t apply to insurance cost-sharing, frequently reported affordability challenges, even when their monthly cost appeared low.
Address Structural Designs that Cause Hardship
- Protect Patients from Harmful Utilization Management Practices: Insurance practices intended to manage costs should not disrupt care or destabilize patients who are doing well on their current treatment. Policymakers should limit non-medical switching for long-term treatments, require clear and timely appeals processes for coverage denials, and increase oversight by requiring disclosure of formulary changes, prior authorization, and step therapy requirements.
- Align Incentives Within the Healthcare Marketplace: Affordability reforms should address misaligned incentives that drive up patient costs without improving care. This includes prohibiting spread pricing, replacing percentage-based PBM compensation with flat-fee service models, ensuring negotiated rebates and discounts are passed to patients, and increasing transparency around PBM contracts, rebate flows, and formulary design.
By adopting a patient-centered approach that reflects these realities, policymakers can advance reforms that improve access, reduce harm, and ensure that affordability efforts deliver real value to the people they are intended to help.
Moving Forward
Patient affordability challenges are complex, but the solutions do not have to be abstract. The survey findings show that meaningful progress requires policies that reflect how patients actually experience affordability and access.
When reforms focus solely on drug prices without addressing insurance practices, cost volatility, and continuity of care, patients remain vulnerable to the same barriers. By centering policy decisions on patient-reported experiences and adopting reforms that make costs predictable, protect access to assistance, and preserve effective treatments, policymakers can better serve the people these efforts are intended to help.