A Deep Hole: The Cancer Cost Toll Patients and Families Face

Lindsey Konkel Neabore

October 25, 2022

When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn't worried about the cost of treatment. A medical assistant in Charleston, South Carolina, Dicks had full-time employment with health benefits.

But when she wasn't able to work for several months due to chemotherapy and its side effects, Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn't approved until September.

Meanwhile, Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.

The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.

"I don't sleep at night," said Dicks, a single mom of two young kids, ages 3 and 11. "Mentally, I'm drained. Just because I have cancer, doesn't mean the bills aren't due every month."

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. Her Medicaid has covered new medical expenses, and she hopes Medicaid 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," Dicks said.

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

Financial toxicity is a catchall term for the burden many Americans with cancer experience.

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

Financial toxicity encompasses the direct costs of medical care, including copays, deductibles, and other out-of-pocket expenses for treatment and medications as well as the indirect costs from loss of income or savings associated with cancer care.

Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.

"Financial toxicity is not unique to the patient," said Li Smith. It "very directly impacts the whole family or household."

The Stifling Financial Pressures

Early in her career, Li Smith was already seeing how her patients' worries extended beyond their physical disease.

One of Li Smith's first patients told her their greatest worry wasn't whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.

"There was much more anxiety and true distress about the financial burden than about the treatment itself," Li Smith recalled.

This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden — with one study estimating that patients paid $21 billion for their cancer care in 2019.

The burden is often compounded by decreased income. Between 40% to 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 — which 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, experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 more likely to encounter severe financial toxicity compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.

The distress, if left unchecked, can spiral out of control.

Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1300 monthly COBRA premium, the mother of 5 had no financial safety net. She risked having her car repossessed and her utilities shut off.

"I gave tentative thought to how I could take my life and make it look like an accident," said MacDonald. "I thought the kids would be better off without me."

For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.

When Stephanie Caputo, 43, of Monroe, New Jersey, began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.

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 4 teenagers.

After finishing chemotherapy, and during radiation, Caputo 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," said Caputo.

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 said.

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

Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.

"We are just at the beginning of realizing that this is a real problem," said 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," said 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 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 healthcare on hold. She never, for instance, went to physical therapy to address injuries sustained 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 said. But like many caregivers "I wasn't really thinking about my own health."

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

Hadfield 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, New York, 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," said Hadfield.

When Hadfield quit her job, she and her husband — who was self-employed — purchased health insurance coverage through the New York State marketplace. The monthly insurance payments for Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family's monthly mortgage payments.

In addition to providing childcare 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 a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. 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 physicians do to help patients and families at risk for financial toxicity?

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

These gaps put pressure on physicians 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 said.

Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. 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, said MacDonald, the mother of 5 who contemplated 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.

From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan in Ann Arbor.

Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.

"Financial burden is part of the broader discussion about shared decision making," said Palmer.

In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.

What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Palmer.

And every little bit can help. In 2006, MacDonald started the Pink Fund — a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Stephanie Caputo and Brittany Dicks received grants from the Pink Fund. For Caputo, the funds covered 2 months of car payments and for Dicks, it covered 2 months of rent.

While the one-time grant was a big help, said Dicks, "cancer is an everyday thing." And "we all deserve peace of mind" when trying to heal.

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