PEOPLE NEWLY DIAGNOSED with cancer face a slew of treatment decisions—then they must figure out how to pay for it all.

Cancer patients are more likely to experience financial hardship than the general public, according to research presented during an April 8 session at the American Association for Cancer Research (AACR) Annual Meeting 2024 in San Diego. (The AACR publishes Cancer Today.) Presenters shared ways researchers and advocates are working to intervene through policy advocacy and patient navigation, aiming to prevent the downward spiral of financial toxicity before it begins.

Financial Hardship Among People With Cancer

Cancer treatment can involve high out-of-pocket costs, and as people receive treatment, they may need to take time off from work and lose income or insurance coverage, according to Robin Yabroff, a health services researcher with the American Cancer Society. As a result, they may worry about medical bills, delay or skip medical care, file for bankruptcy, or struggle to afford everyday needs, such as food and housing.  

Rising treatment costs have exacerbated cancer patients’ risk of financial hardship, Yabroff said. According to Memorial Sloan Kettering Cancer Center data, in the 1960s, the median cost for a new cancer treatment was around $100 per month. By the 2000s, that had increased to between $5,000 and $10,000 per month, while many drugs today exceed $20,000 per month. “The cost of drugs is increasingly out of reach for people making the median household income and even more so for people living at or below the federal poverty line,” Yabroff said.

Even those with health insurance face high risk for financial hardship because of the increased prevalence of high-deductible plans, higher copays and being underinsured, which is when patients have high out-of-pocket costs compared with income, according to Yabroff.

She noted financial hardship following a cancer diagnosis can manifest itself in three ways: in material conditions, such as medical bills and rising debt; through the psychological impact of worrying about finances; or by having to adopt unhealthy coping behaviors, such as delaying or forgoing medical care. In a national survey of cancer survivors ages 18 to 64, 87% of uninsured respondents and 65% of people with private insurance reported having at least one type of financial hardship, with more than a third reporting multiple forms.

Yabroff said research also has shown financial toxicity is associated with adverse health effects, such as worse quality of life, increased symptom burden and higher mortality risk.

With more knowledge about its prevalence and impact, providers and researchers are exploring interventions to address financial toxicity, according to Matthew P. Banegas, a health services researcher at the University of California, San Diego, School of Medicine.

In a 2022 National Cancer Institute survey of 258 oncology practices, 78% reported screening their patients for financial hardship. Common screening methods included a social worker evaluation, an assessment by the medical team and a patient survey. If the screening flagged someone as being at risk, most practices referred people to a social worker, a financial navigator or billing staff.

Banegas is working on a clinical trial in which 369 people with cancer were randomly assigned to receive different forms of financial education. One group will receive a resource sheet, while two others will work with a financial navigator for six months. The navigators will proactively reach out once to participants in one cohort and three times to people in the other group. Researchers will see which approach yields the greatest reduction in financial hardship.

Preventing Financial Toxicity

“We can actually do more than assess for financial hardship; we can actually do some things to prevent it,” said Joanna Doran, a cancer rights attorney with Triage Cancer in Chicago, a nonprofit that provides information on practical and legal issues for people with cancer. Doran pointed to two key methods: policy changes, and education and navigation for patients and caregivers.

Legislative advocacy can help prevent financial toxicity from impacting people in the first place, according to Doran. Advocates are pushing for legislation that would require insurance companies to cover biomarker testing; increase Medicaid access; require companies to provide paid sick, medical and caregiver leave; and expand access to the Family and Medical Leave Act, which protects an employee’s job if they take a leave of absence.

While many programs and legal protections can help people with cancer navigate financial issues, most patients don’t know about them. “Having the law by itself doesn’t necessarily solve the problem,” Doran said. “You also need the education and the navigation because the laws are complicated and navigating these systems to get access to some of these protections is complicated as well.”

As an example, Doran noted patients can appeal if their private insurance denies coverage for a claim. However, out of 48.3 million people with a denied claim in 2021, 99.9% didn’t file an appeal, meaning “99.9% of people are taking no for an answer,” Doran said. Data also show that when people do appeal, they are successful 50% of the time.

Additionally, if an insurance company denies the appeal, the patient can request an independent review. If this third party finds the procedure should be covered, the insurance company is bound to pay the cost. Yet most people don’t know this option exists, according to Doran.

Triage offers one-on-one legal and financial navigation for patients and caregivers. In 2023, the program advised 1,759 people, 69% of whom had cancer, Doran reported. In a follow-up survey, 91% of participants said their questions had been answered, and 85% reported the call had reduced their stress or anxiety levels.

Thomas Celona is the associate editor for Cancer Today.