EACH/PIC Coalition Urges Policymakers to Better Identify and Address Patient Challenges
Richmond, VA (February 3, 2026) – The Ensuring Access through Collaborative Health and Patient Inclusion Council (EACH/PIC) coalition has released the findings of its new report version 2.0 of our Patient Experience Survey: Prescription Drug Affordability and Unaffordability, part of the only patient-led research project that aimed to uncover why patients can or cannot afford their prescription medications.
Findings underscore a central conclusion: policies that focus narrowly on individual drug prices risk missing the root causes of patient hardship and raise doubts about whether reform efforts prioritize patients or cost savings for the state and broader healthcare system.
“Our research project confirms that policymakers who focus on solutions that target the price of a single prescription drug will miss the opportunity to actually help patients. This includes applying an Upper Payment Limit (UPL), which only caps the cost of the drug for the state and insurer. Despite claims from some UPL supporters, this policy does not cap patients’ out-of-pocket (OOP) costs. Whether patients see any savings depends entirely on whether insurers pass along the lower prices.” stated Tiffany Westrich-Robertson, EACH/PIC coalition founder and person living with a chronic condition treated by biologic therapies.
This research study included 537 respondents, 54 from Virginia, and concluded:
- As found in the pilot study, insurance barriers, high cumulative costs, income, and evolving life experiences are the primary drivers behind patient affordability challenges.
- Hardships were not directly linked to affordability. Patients reported hardships (defined as issues affording groceries or housing, or experiencing debt) at every income level. 56% of people who reported hardships still reported their drugs as ‘affordable’ and 47% linked hardship to cumulative OOP drug costs.
- Patients reporting drugs as unaffordable described insurance barriers, not simply cost.
- 95% of patients who stopped taking their medication cited insurance-related challenges, including formulary changes, accumulators, and dosage caps, as the primary cause.
- 72% who never started taking their medication cited insurance-related challenges, including denial of coverage and high deductible and out of OOP maximum plans.
- Delayed or denied financial assistance leads to affordability challenges. Patients reported the inability to apply financial assistance to offset drug costs due to insurance rules as a contributor to unaffordability. In contrast, 71% of patients stated financial assistance was the reason why their medication was affordable.
As in the pilot study, findings confirmed that no single drug emerged as creating broad affordability challenges. However, in this study, findings suggested that no drug can emerge as causing broad patient affordability challenges – due to volatile insurance-related cost-sharing inconsistencies and instability.
- 41% (221 people) of all survey participants reported “OOP cost shifting”, defined as the same person paying at least two different OOP costs for the same drug over time.
- 51% of patients who reported OOP cost shifting also experienced “affordability shifting”, defined as the same person reporting at least one OOP cost “affordable” and at least another OOP cost as “unaffordable” for the same drug over time.
- 55% of those patients experienced OOP cost shifting between three or more ranges, with 15% reporting ranges between $0-$10 and $1001+ for the same drug over time. As a result, many lost access to their treatment (“access shifting”), defined as OOP cost shifting that triggers affordability shifting and, as a result, access to treatment shifts.
When layered on top of ongoing pricing unpredictability, other drivers of unaffordability – such as income and changing life experiences – compound financial strain and create unnecessary anxiety, further undermining patients’ ability to reliably access the treatments they need.
Additional themes that emerged included:
- Patients on therapeutic alternatives (drugs that insurance companies deem as interchangeable) cited non-medical switching (NMS) (insurer switching for their cost savings, not due to health considerations), caused worse outcomes. UPLs are likely to cause NMS for patients who are not on the UPL drug when there are therapeutic alternatives.
- 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 findings were clear: OOP cost shifting, affordability shifting, and access shifting – combined with changing insurance plans, plan design, or formulary modifications, demonstrate that prescription drug affordability is largely dependent on the patients’ healthcare coverage.
Non-UPL solutions are the right policy solutions if the primary goal of the proposed Virginia Prescription Drug Affordability Board (PDAB) is to improve patient affordability and access to treatments. Suggested approaches include:
- 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.
“If affordability is truly about patients, then the solutions must be rooted in why patients say they can’t afford their medicines. Citing ‘cost’ is a superficial driver. As demonstrated in our findings, a UPL is a tool that cannot help the root causes behind patient-reported prescription drug affordability challenges. Policymakers must either pursue reforms that genuinely improve patient affordability or be honest that these processes are designed to save the system money, not patients,” Westrich-Robertson said.
As a result of these findings, and on behalf of patients whose lives are dependent upon affordable medications, the EACH/PIC coalition is asking the Virginia legislature and Governor Spanberger to study the impact of UPLs on patient access before allowing them to be applied to PDAB legislation.
This survey and prior pilot survey was developed after patients recognized a serious disconnect between their real-world experiences and the results of short and overly simplified surveys used by affordability boards. This project should serve as the benchmark step towards gathering meaningful input from patients and caregivers to identify real-world patient challenges and ensure that affordability efforts deliver real value to the people they are intended to help.
The full report, policy recommendations, and survey questions 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