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, S.C., Ms. Dicks had full-time employment with health benefits.
But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. 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, Ms. 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 Ms. Dicks, a single mother 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.
Ms. 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,” Ms. Dicks said.
Researchers who study the financial impacts of cancer have a term for Ms. 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, Houston.
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 Dr. Li Smith. It “very directly impacts the whole family or household.”
Stifling financial pressures
Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.
One of Dr. 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,” Dr. 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% 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 found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.
Dr. Li Smith and colleagues have found that younger patients aged 18-64 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 times 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 $1,300 monthly COBRA premium, the mother of five 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 Ms. 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, N.J., 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.
Ms. 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, Ms. 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 Ms. 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.