American Cancer Society Cancer Action Network, Washington, DC
Amy Farner , Tenbroeck Smith , Mark Fleury
Background: Cancer interventions are subject to a range of regulations, but data from large, nationally representative surveys are not always available in time to inform the policy process and do not always address issues specific to cancer patients and survivors. Understanding their experiences is critical to achieving policy solutions to issues such as access to effective pain relief, reducing unexpected medical bills, and reducing the impact of high prescription drug costs on treatment for lower income cancer patients. This research intended to better understand patient experiences and opinions in a statistically valid manner specifically targeted to the policy process. Methods: 3057 panelists were identified from ACS contacts, health systems, and social media advertising through ACS/ACS CAN pages and paid Facebook ads, to participate in a series of surveys across a year. The panel included diverse survivors across age, gender, race, ethnicity, economic status, and cancer type. Online surveys deployed semi-monthly on cancer survivorship topics impacted by current policy, including access to/affordability of care, pain treatment, and prescription drug costs. Responses were analyzed for the entire population and across subgroups of cancer survivors. Results: Each survey achieved a response rate between 35% and 50% of all panel members, resulting in a margin of error +/- 3% and 95% confidence level. Insights from cancer patient and survivor experiences helped support public policies through findings such as (but not limited to): 41% of those prescribed opioids had trouble getting their medicine, creating difficulty participating in work, family, or social events; extra trips to the doctor or pharmacy; negative impact on treatment, and trips to the Emergency Room due to uncontrolled pain; 24% received a surprise medical bill, increasing their anxiety, reducing likelihood to see a specialist, and reducing likelihood to seek emergency care during a serious health issue; and 31% of those with household income less than $30,000 report trouble affording prescription drugs and 17% have delayed or not filled a prescription due to cost. Findings supported the policy process by helping craft policy positions aligned with cancer patient preferences, raising public awareness, and communicating to policymakers the impact of policies on cancer. Conclusions: The panel methodology illustrates the impact of policy decisions on cancer patients and survivors. Findings provide an unprecedented level of input to the policy process for cancer patients and survivors.
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