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University-hospital collaboration tackles financial hardship among young adult patients and survivors of cancer

by Jordan Wingate

This article originally appeared in the School of Social Work 2024 Spring Impact Report.

For young adult patients and survivors of cancer in particular, the high cost of treatment—and the non-medical expenses that go along with it, like childcare and transportation—can be “life-changing,” says University of North Carolina at Chapel Hill School of Social Work assistant professor Bridgette Thom.

But with the right support at the right time, she insists, it doesn’t have to be.

Now leading an NIH-funded study ($275,000) with a research team from four universities and Memorial Sloan Kettering Cancer Center, Thom is working with young adult patients and survivors to co-create the financial literacy resources they need to prevent their medical debt and out-of-pocket expenses from upending their wellness and quality of life.

Such new tools are sorely needed in the campaign against financial toxicity — now used to describe economic or financial distress related to medical care generally, but originally coined to describe the financial impact of cancer treatment. In the U.S., cancer treatment is expensive to the point that medical bills represent a major stressor in an already stressful treatment process. A survey of patients with cancer by the American Society of Clinical Oncology found just one thing that worried patients as much as dying from cancer: the expected financial impact of their treatment.

“It’s generally worse for the young adult population,” Thom said, noting that young adults often lack the resources and knowledge to navigate complex and consequential financial and medical decisions, especially while receiving treatment.

Indeed, in the project’s initial interviews of young adult survivors of cancer about skills to cover in a financial capability intervention, the top three so far have been navigating health insurance, understanding budgets, and managing medical debt. These skills will form the foundation of the project’s next phase: developing and pilot testing an online education program rooted in social cognitive theory that teaches these skills to a national audience using digital animations and interactive exercises.

“The goal is to give these young adults the language and skills to interact with the financial side of the health care system, which is something that people are never taught how to do,” Thom said. “This aspect of health care is confusing, and it’s designed to be that way.”

Thom hopes to turn pilot study findings into a core intervention model that can be tested in larger samples and then tailored to specific populations of young adult patients and survivors of cancer facing intersectional risk factors for financial hardship. For instance, in a separate recently funded grant, she has proposed testing a financial skills and insurance navigation intervention tailored to women with cervical cancer, which disproportionately affects Black, Indigenous and Latina/x women.

While the intervention will support young adult patients and survivors facing financial peril, Thom’s project team is candid about the fact that addressing financial toxicity is not the burden of patients and survivors only. Rather, it will require systemic change that extends to providers, health care systems, insurance companies, drug manufacturers and policy contexts. Most immediately, it will also involve training providers to understand billing processes and advocate for patients within systems and hospitals.

“Social workers and patient advocates and even nurses need to have a greater understanding of the financial aspect of treatment,” said Samantha Watson, a consultant on Thom’s project and founder of The SAMFund, an organization that provides financial support to young adult cancer survivors. “Financial issues need to be on everybody’s radar.”