The Toll of Cancer Costs on Patients and Families

As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.

But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle. 

Dicks is still in deep medical debt. Medicaid has covered new medical expenses, and she hopes it will reimburse her for the debt she incurred over the summer, while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.

“I fear that I’m not going to be able to dig out of this hole,” she says. 

Researchers who study the financial impacts of cancer have a term for Dicks‘s experience: Financial toxicity. 

It’s a catchall term for the burden many Americans with cancer have.

“Financial toxicity is a multidimensional concept. There‘s both a material burden and a psychosocial one,” says Grace Li Smith, MD, PhD, a radiation oncologist at the University of Texas MD Anderson Cancer Center in Houston.

The burden is often made worse by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.

In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis. 

Younger adults may be even more financially vulnerable. A study of patients in Washington state found that those under 65 – who represent about half of cancer cases– were 2 to 5 times more likely to declare bankruptcy than patients over 65. 

In another study published last July, Li Smith and colleagues found that younger patients, ages 18 to 64, had more money troubles, which meant less money for food, more problems with staying on their medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 more likely to face severe financial toxicity, compared with older adults, and about 4 times more likely to have severe psychological effects from this burden.

Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of four teenagers. 

After finishing chemotherapy, and during radiation, she went back to work, part-time, against her doctor‘s advice. 

“My doctor is telling me I can’t work, but I also can’t have my house go into default,” Caputo says. 

But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she says.

The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.

Financial Toxicity Impacts Families

“We are just at the beginning of realizing that this is a real problem,” says Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York City. 

Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study, published in July, found the effect was greatest among family members of younger adults with cancer. 

“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” says Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”

Chino speaks from personal experience. When her fiancé, later her husband, was diagnosed with neuroendocrine carcinoma in 2005, Chino quit her job as art director at a television production company to take care of him.

The couple, both in their 20s, struggled to afford his care. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries she got from sleeping in hospital chairs and moving around her husband, who was over 6 feet tall. At one point, she walked with a limp.

Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she says. But like many caregivers, “I wasn’t really thinking about my own health.”

Danielle Hadfield, 35, an ER nurse in Rochester, NY, also delayed her own care when her mom got sick. 

She quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Hadfield knew her mom, who lived 3.5 hours away in Albany, NY, would need a lot of care in the upcoming months. 

“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” she says.

In addition to providing child care for her young daughter and making frequent trips to Albany, Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace part of her lost income. During this time, she began to have pain attacks that would migrate through her body, along with tongue and facial numbness that came and went. She ignored these health issues for nearly a year, until after her mom died in November 2021.

Only after her mother passed away did Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small fiber sensory neuropathy. 

But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment. 

Is Help Out There?

What can doctors do to help patients and families at risk for financial toxicity? 

Specific ways to deal with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, says Li Smith. 

These gaps put pressure on doctors to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Li Smith says. 

Patients and family members, on the other hand, are often reluctant to bring up cost with doctors. Some may be ashamed to talk about their financial problems, while others may fear doing so will prevent them from being offered the best possible treatments, says MacDonald, the mother of five who thought about taking her own life.

But, experts say, financial toxicity needs to be dealt with head-on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.