University-hospital Collaboration Tackles Financial Hardship Among Young Adult Patients and Survivors of Cancer
CORE TEAM
Bridgette Thom
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.”
by Jordan Wingate
Stakeholder Interview
Samantha Watson, Patient Advocate and Founder, Samantha Watson Consulting LLC
SSW: Typically, conversations about cancer’s effects tend to focus on health concerns. Why is it so important to look at financial concerns related to cancer, particularly among young adults?
SW: Almost everyone diagnosed with cancer will have to contend with major financial stresses. That’s not unique to young adults. What is unique is the life stage in which young adults experience those stresses: no savings, limited employment, new to health care, new to advocating for themselves, and they suddenly find themselves with massive debt at a stage in life when they’re supposed to be hopeful and moving forward. They can’t buy a house, they can’t buy a car, they can’t get a loan. On a personal, emotional level, there’s so much shame, and they can’t move forward. Because of this shame and overwhelming financial stress, a lot of young adults stop going to the doctor, stop getting follow-up care, and stop taking medications as prescribed. The more debt piles up, the harder it gets to take care of themselves, and the small health problems become big health problems.
SSW: You previously founded a patient support organization, The SAMFund, that also supports young adult survivors of cancer facing financial toxicity. What strikes you as innovative about this current project?
SW: One of the things that was frustrating to me was that our signature program, SAMFund grants, was reactive. We provided financial assistance to young adult survivors reaching the point of crisis (such as someone about to lose their home). Bridgette’s project is more proactive: it reaches young adults before they get to a crisis moment. If we can put them in a position of strength early, it may not change the amount they owe, but it will change their ability to manage their debt. So, my greatest hope is that it reaches many, many young adult patients when they need it — ideally before they get the bill in the mail, or before it goes to a collection agency.
SSW: How, in your view, should information about financial toxicity and medical debt be delivered to patients?
SW: I think it's important that providers are aware of these issues, too, so that they can understand what their patients might be experiencing and why. Sometimes someone's financial stress prevents them from coming to an appointment or adhering to treatment. And sometimes it's a matter of not having child care or needing to take time off work that they don’t have. In either case, if providers — especially those in support roles like social workers and patient advocates — understand these issues, they can be better prepared to offer resources to support their young adult patients and families.
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