In America, cancer patients endure debt on top of disease

Jeni Rae Peters would make promises to herself as she lay awake nights after being diagnosed with breast cancer two years ago.

“My kids had lost so much,” said Peters, a single mother and mental health counselor. She had just adopted two girls and was fostering four other children. “I swore I wouldn’t force them to have yet another parent.”

Multiple surgeries, radiation, and chemotherapy controlled the cancer. But, despite having insurance, Peters was left with more than $30,000 of debt, threats from bill collectors, and more anxious nights thinking of her kids.

“Do I pull them out of day care? Do I stop their schooling and tutoring? Do I not help them with college?” Peters asked herself. “My doctor saved my life, but my medical bills are stealing from my children’s lives.”

Cancer kills about 600,000 people in the United States every year, making it a leading cause of death. Many more survive it, because of breakthroughs in medicines and therapies.

But the high costs of modern-day care have left millions with a devastating financial burden. That’s forced patients and their families to make gut-wrenching sacrifices even as they confront a grave illness, according to a KHN-NPR investigation of America’s sprawling medical debt problem. The project shows few suffer more than those with cancer.

About two-thirds of adults with health care debt who have had cancer themselves or in their family have cut spending on food, clothing, or other household basics, a poll conducted by KFF (Kaiser Family Foundation) for this project found. About 1 in 4 have declared bankruptcy or lost their home to eviction or foreclosure.

Other research shows that patients from minority groups are more likely to experience financial hardships caused by cancer than white patients, reinforcing racial disparities that shadow the U.S. health care system.

“It’s crippling,” said Veena Shankaran, a University of Washington oncologist who began studying the financial impact of cancer after seeing patients ruined by medical bills. “Even if someone survives the cancer, they often can’t shake the debt.”

Shankaran found that cancer patients were 71% more likely than Americans without the disease to have bills in collections, face tax liens and mortgage foreclosure, or experience other financial setbacks.

Oncologists have a name for this: “financial toxicity.”

“Sometimes,” Shankaran said, “it’s tough to think about what the system puts patients through.”

At the three-bedroom home in Rapid City, S.D., that Peters shares with her children and a friend, there isn’t time most days to dwell on these worries. There are ice skating lessons and driving tests and countless meals to prepare. Teenagers drift in and out, chattering about homework and tattoos and driving. The smallest children congregate at a small kitchen table.

Peters, who sports tattoos and earlier this year dyed her hair purple, never planned to have a family. In her late 30s, she wanted to do more for her adopted community, so she took in foster children, many of whom come from the nearby Pine Ridge Indian Reservation. One of her daughters had been homeless.

“Foster kids are amazing humans,” she said. “I joke I’m the most reluctant parent of the most amazing children that have ever existed. And I get to help raise these little people to be healthy and safe.”

In spring 2020, the secure world Peters had carefully tended was shattered. She was diagnosed with stage 2 breast cancer.

Within weeks, she had an intravenous port inserted into her chest. Surgeons removed both her breasts, then her ovaries after tests showed she was at risk of ovarian cancer, as well.

Cancer treatment today often entails a costly, debilitating march of procedures, infusions, and radiation sessions that can exhaust patients physically and emotionally. It was scary, Peters said. But she rallied her children.

“We talked a lot about how they had all lost siblings or parents or other relatives,” she said. “All I had to do was lose my boobs.”

Much harder, she said, were the endless and perplexing medical bills.

There were bills from the anesthesiologists, the hospital and a surgery center. In total, Peters estimates her medical debts now exceed $30,000.

Debts of that size aren’t unusual. Nationwide, about 1 in 5 indebted adults who have had cancer or have a family member who’s been sick say they owe $10,000 or more, according to the KFF poll. Those dealing with cancer are also more likely than others with health care debt to owe large sums and to say they don’t expect to ever pay them off.

This debt has been fueled in part by the advent of lifesaving therapies that also come with eye-popping price tags. The National Cancer Institute calculated the average cost of medical care and drugs tops $42,000 in the year following a cancer diagnosis. Some treatments can exceed $1 million.

Usually, most costs are covered. But patients are increasingly on the hook for large bills because of deductibles and other health plan cost sharing. The average leukemia patient with private health insurance, for example, can expect to pay more than $5,100 in the year after diagnosis, according to an analysis by the consulting firm Milliman. The average blood cancer patient covered by fee-for-service Medicare can expect to pay more than $17,000 out-of-pocket in the year following diagnosis, Milliman found.

More broadly, the KHN-NPR investigation found that about 100 million people in the U.S. are now in debt from medical or dental bills. Poor health is among the most powerful predictors of debt, with this debt concentrated in parts of the country with the highest levels of illness.

For her part, Peters has had seven surgeries since 2020. Through it all, she had health insurance through her employers. Like most plans, however, hers have required she pay thousands of dollars out-of-pocket.

Within weeks of her diagnosis, the bills rolled in. Then collectors started calling. One call came as Peters was lying in the recovery room after her double mastectomy.

Peters faced more bills when she switched jobs later that year and her insurance changed. The deductible and cap on her out-of-pocket costs reset.

In 2021, the deductible and out-of-pocket limit reset again, as they do every year for most health plans. So when Peters slipped on the ice and broke her wrist ― a fracture likely made worse by chemotherapy that weakened her bones ― she was charged thousands more.

“I don’t even know anymore how much I owe,” Peters said. “Sometimes it feels like people just send me random bills. I don’t even know what they’re for.”

Before getting sick, Peters was earning about $60,000 a year. Along with the stipend she receives for foster care it was enough to provide for her children, but the family budget was always tight. Peters doesn’t own her home and has next to no savings. Now, she said, they are living at the edge.

Peters took on extra work to pay some of the bills. Five days a week, she works back-to-back shifts at both a mental health crisis center and a clinic where she counsels teenagers, some of whom are suicidal.

But Peters’ credit score has tumbled below 600. And the bills pile high on the microwave in her kitchen.

“I’m middle-class,” she said. “Could I make payments on some of these? Yes, I suppose I could.”

That would require trade-offs. She could drop car insurance for her teenage daughter, who just got her license. Canceling ice skating for another daughter would yield an extra $60 a month. But Peters is reluctant.

“Do you know what it feels like to be a foster kid and get a gold medal in ice skating? Do you know what kind of citizen they could become if they know they’re special?” she said. “There seems to be a myth that you can pay for it all. You can’t.”

About 4 in 10 with debt have taken money out of a retirement, college, or other long-term savings account, the KFF poll found; about 3 in 10 have moved in with family or friends or made another change in their living situation.

Kashyap Patel, chief executive of Carolina Blood and Cancer Care Associates, said the South Carolina practice has found patients turning to food banks and other charities to get by. One patient was living in his car. About patients need some kind of financial aid, Patel estimated. Even then, many end up in debt.

The lasting effects of medical debt on cancer survivors and their families are not yet fully understood by researchers, said Robin Yabroff, an epidemiologist at the American Cancer Society.

“What does it mean for a family if they have to liquidate savings or drain college funds or sell their home?” Yabroff said. “We just don’t know yet.”

As Peters put away bags of groceries in her kitchen, she conceded she doesn’t know what will happen to her family. She worries about how she’ll pay if the cancer reappears. She is still wading through mailed collection notices and fielding calls from debt collectors.

She asked one debt collector whether he had kids. “He told me that it had been my choice to get the surgery,” Peters recalled. “And I said, ‘Yeah, I guess I chose not to be dead.’”