Across the country, Prescription Drug Affordability Boards (PDABs) are working to bring down the cost of medications. We support the goal of lowering costs for patients, but we are concerned that the PDAB approach is built entirely on the wrong foundation.
Rather than direct their efforts to resolving patient problems, PDABs are focused on the retail costs of drugs and system-level spending. Also, they mostly ask patients to weigh in after government representatives have already chosen prescription drugs based on trial-and-error methods that are not inclusive of robust patient input. Further, it is done through very limited questions designed to fit within their own framework. The oversimplified surveys employed by PDABs fail to ask the most important question: Why do patients find certain medications unaffordable?
At EACH/PIC, we are dedicated to ensuring patients shape policies that involve them, so we took the initiative to conduct research that can steer government prescription drug reviews in the right direction.
Why We Created the Patient Experience Survey
Ultimately, we heard directly from patients that the current government-led survey questions and analysis didn’t reflect their lived experience. Solutions cannot be developed if the patient ‘why’ is not first identified.
So we built a better tool.
The Patient Experience Survey: Prescription Drug Affordability and Unaffordability was created by the Patient Inclusion Council (PIC) in collaboration with research experts, including patient research partners (PRPs), and patient organizations. We first identified endpoints to study, then designed the survey to incorporate open-ended questions to capture context.
Our goal was to document not just whether patients could afford their medications, but why. The results proved patient affordability is not rooted in retail cost, but rather is generated by barriers like insurance delays, coverage loss, and financial assistance gaps.
What We Learned
1. Affordability is personal, and it often is not directly correlated to drug price.
20% of patients paying just $0–$10/month for their prescriptions still described their medications as unaffordable. But why? Because of insurance changes, copay accumulators, cumulative costs, low income, or fear that assistance might disappear. Many thought of affordability in terms of overall medical costs, not their specific costs at the pharmacy counter.
2. “Unaffordable” often means inaccessible.
When patients labeled drugs unaffordable, they were often describing access issues, not cost alone. 100% of patients who stopped taking a drug for affordability reasons cited insurance barriers like denials, step therapy, or being forced to switch off assistance. 75% of those who skipped or stretched doses pointed to insurance-related delays.
3. Insurance and copay assistance—not drug type or price—were the strongest predictors of affordability.
Among those taking specialty drugs, 71% with financial assistance said their medication was affordable, and 88% of patients who reported paying $0–$10 per month used financial assistance. No individual drug emerged as singularly creating hardship.
What PDABs Are Missing
PDABs are basing major pricing and access decisions on incorrect assumptions, including:
- That patient affordability is tied directly to the retail price
- That skipping doses means the drug is “too expensive,” rather than blocked by red tape
- That survey data, without patient context, is enough to guide policy
As a result, PDABs are creating reforms that sound good in a political ad but fail to address the root causes of why patients struggle. Worse, it could lead to changes that increase utilization management, delay access, or force patients off the therapies that work best for them.
Our Message to Policymakers and PDABs
If we want to get drug affordability right, we have to start by listening to patients and addressing their actual needs. Our survey findings are clear:
- Affordability is shaped by insurance design, access to assistance, life situations, and the cumulative cost of managing a chronic condition.
- Policymakers must stop assuming that price alone tells the story.
- Patients must be treated as experts in their own experience, and invited to the table before, during, and after decisions are made.
We look forward to sharing these findings directly with PDABs, state legislators, and other decision-makers across the country in the months ahead.