Blog Post

What Keeps Patients With Cancer From Using Financial Assistance Programs?

Barriers Include Perceptions of Eligibility, Fear of Consequences, and Being Overwhelmed, Interviews Show

March 8, 2023

By:

Meredith Doherty, PhD, LCSW
and Jessica L. Jacoby

Print:

A cancer diagnosis brings challenges of illness and treatment side effects, and it also causes financial stress for many patients. Cancer-related financial hardship (financial toxicity) has been associated with adverse health and treatment outcomes, including poor adherence to treatment, anxiety and depression, reduced quality of life, and early mortality. Although many cancer centers have financial assistance programs for their patients, these programs are underused, despite the Patient Protection and Affordable Care Act of 2010, which requires that nonprofit hospitals implement a Financial Assistance Program and make it widely known to patients and community members. We interviewed gynecological oncology patients to understand why these programs are not more widely used.

Our conversations revealed four major barriers to accessing financial assistance programs at cancer centers.

Lack of awareness. Some participants expressed surprise that the hospital offered assistance to people struggling with health bills.

Perception of ineligibility. Participants who were aware of programs “assumed those programs weren’t for people like [them],” suggesting that they made too much money or did not have high enough hospital bills. Some also assumed that they would not qualify because they were insured, revealing a belief that these programs were only available to uninsured patients.

Fear of negative consequences. Some respondents felt afraid that if they revealed their need for assistance they would lose benefits or access to their providers. One woman was concerned that if she asked for help, the hospital might banish her. “I don’t ever want to complain—I’m afraid that the hospital would send me away,” she said. Another woman was concerned that seeking help would interfere with her family’s immigration to the U.S.

Being overwhelmed. Participants said the pressure and demands of treatment deterred them from pursuing assistance. Some patients were fatigued (a common side effect of treatment) while others said the application was too long and confusing. Participants frequently mentioned bills “falling through the cracks” and “snowballing.”

How to Improve Patient Access to Financial Assistance Programs

In addition to revealing barriers to access, participants made suggestions on how to improve access.

Simplify financial processes. Participants feel overwhelmed, confused, and generally exhausted, and are not able to maneuver through tedious complex processes.
Provide individualized assistance and wraparound services. These would be very helpful to participants, one of whom suggested financial counseling as a way of addressing barriers.
Be more proactive and intervene earlier. Participants did not know these programs were available, or that they would qualify. If someone, like a financial counselor or advocate, were to speak with patients earlier in their diagnosis, they might be more prepared for the financial burdens of cancer.

Given the lack of awareness and perceptions of ineligibility among this group of patients, we suggest the following strategies for improving access: address stigma and misconceptions directly; provide clear, actionable, and accurate information; increase the simplicity and convenience of the application process; and provide personalized assistance throughout the process. We also suggest redesigning processes using the EAST framework, “an evidence-based strategy for making an organization’s desired outcomes “Easy, Attractive, Social, and Timely.”

We suggest that practitioners should be involved in developing an organization’s Financial Assistance Program to identify and engage patients who would benefit. Social workers and financial advocates should work together with hospital financial offices to create the best practice treatment for cancer patients experiencing financial toxicity.

The study “‘I Wish I Knew About These Programs Before!’ A Brief Report Exploring Barriers to Financial Assistance Reported by Gynecological Oncology Patients” was published December 14, 2022 in the Journal of Psychosocial Oncology. Authors include Meredith Doherty, Jessica Jacoby, and Francesca Gany.