RAPID CITY, South Dakota ― Jeni Rae Peters kept making promises to herself while she slept awake at night after being diagnosed with breast cancer two years ago.
“My children had lost so much,” said Peters, a single mother and mental health counselor. She had just adopted two girls and was raising four other boys. “I swore I wouldn’t force them to have another father.”
Multiple surgeries, radiation and chemotherapy controlled the cancer. But despite having insurance, Peters was left with more than $30,000 in debt, threats from collectors and more anxious nights thinking about his children. “Do I take them out of daycare? Do I stop giving them classes and tutorials? Didn’t I help them with college? Peters wondered. “My doctor saved my life, but my medical bills are stealing the lives of my children.”
Cancer kills about 600,000 people in the US each year, making it one of the leading causes of death. Many more survive thanks to advances in drugs and therapies.
But the high costs of modern care have left millions of people with a devastating financial burden. That has forced patients and their families to make heartbreaking sacrifices even when faced with serious illness, according to a KHN-NPR investigation into America’s expanding medical debt problem. The project shows that 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 back on food, clothing or other household essentials, a survey conducted by KFF for this project found. About 1 in 4 has filed for bankruptcy or lost their home to eviction or foreclosure.
Other research shows that patients from minority communities are more likely to experience financial hardship from cancer than white patients, reinforcing racial disparities that cast a shadow over the US health care system.
“It’s crippling,” said Dr. Veena Shankaran, an oncologist at the University of Washington who has studied the financial impact of cancer. “Even if someone survives cancer, they often can’t get out of debt.”
Shankaran found that cancer patients were 71 percent more likely than Americans without the disease to have bills in collections, face tax liens and foreclosures, or experience other financial setbacks. Analyzing bankruptcy records and cancer registries in Washington state, Shankaran and other researchers also found that cancer patients were 2½ times more likely to file for bankruptcy than those without the disease.
And those who went bankrupt were more likely to die than cancer patients who didn’t.
Oncologists have a name for this: “financial toxicity,” a term that echoes intractable vomiting, life-threatening infections, and other ill effects of chemotherapy.
“It’s hard,” Shankaran said, “to think about what the system puts patients through.”
Cancer diagnosis disrupts family
In the three-bedroom house in Rapid City that Peters shares with her children, most days there is no time to dwell on these concerns. There are ice skating lessons and driving tests and countless meals to prepare. Teenagers come and go, chatting about homework, tattoos and driving.
Younger children congregate at a small kitchen table under a wall decorated with seven vintage telephones. (As Peters says, red is a direct line to Santa, green goes to the Grinch, and a phone shaped like a space shuttle connects to astronauts orbiting Earth.)
Peters, 44, cheerfully presides over the chaos, directing her children with sarcastic comments and expressions of love. She watches with pride as one teenage daughter helps another with math in the living room. She later dances with a 5-year-old to Queen under a disco ball in the entrance hall.
Peters, who sports tattoos and dyed her hair purple earlier this year, never planned on having a family. When he was in his late 30s, he wanted to do more for his adoptive community, so he took in foster children, many of whom hail from the nearby Pine Ridge Indian Reservation. One daughter had been homeless.
“Foster children are amazing human beings,” he said. “And I can help raise these little people to be healthy and safe.”
In the spring of 2020, the safe world that Peters had carefully cared for shattered. As the covid pandemic spread across the country, she was diagnosed with stage 2 breast cancer.
Within weeks, an IV port was inserted into his chest. Surgeons removed both of his breasts, then her ovaries after tests showed she, too, was at risk of ovarian cancer.
It was terrifying, Peters said. But she gathered her children. “We talked a lot about how everyone had lost their siblings, parents or other relatives,” she said. “All I had to do was lose my breasts.”
Much more difficult, he said, were the endless and bewildering medical bills.
There were bills from the anesthesiologists who attended her surgeries, from the hospital and from a surgical center. In total, Peters estimates that her medical debts now exceed $30,000.
High costs, despite insurance
Debts of that size are not unusual. Nationwide, about 1 in 5 indebted adults who have had cancer or have a sick family member say they owe $10,000 or more, according to the KFF survey. Those facing cancer are also more likely than others with health care debt to owe large sums and say they never expect to pay it off.
This debt has been fueled in part by the advent of life-saving therapies that are also exorbitantly priced. The National Cancer Institute has estimated that the average cost of medical care and medications exceeds $42,000 in the year after a cancer diagnosis. Some treatments can exceed a million dollars.
Usually most costs are covered. But patients are increasingly hooked on high bills due to annual deductibles and other health plan cost sharing.
Peters has had seven surgeries since 2020. Regardless, he had health insurance through his employers. Peters said she knew she had to keep working or lose coverage and face even higher bills. However, like most plans, his has required you to pay thousands of dollars out of pocket for him each year.
Within weeks of his diagnosis, the bills came. Then the collectors started calling. One call came as Peters was lying in the recovery room after her double mastectomy. “I was a little delirious, and I thought they were my children,” she said. “It was someone asking me to pay a medical bill.”
Before getting sick, Peters was earning about $60,000 a year. She said it was enough to support her children, supplemented by a stipend she receives for foster care.
The family budget was always tight. Now, she said, they are living on the edge. “I keep praying for a shoe fairy,” she said, joking about the demands of so many growing feet in her household.
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 an adolescent counseling clinic. Last year, three friends from the East Coast paid off some of the debt.
He said he might cancel car insurance on his teenage daughter, who just got her license. Canceling ice skating for another daughter would bring in 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?
Many cancer patients face difficult decisions.
About 4 in 10 with debt have taken money out of a retirement, college or other long-term savings account, the KFF survey found; about 3 in 10 have moved in with family or friends or made another change in their living situation.
Dr. Kashyap Patel, CEO of Carolina Blood and Cancer Care Associates, said the South Carolina practice has found that patients turn to food banks and other charities to survive. A patient lived in his car. Patel estimated that half of patients need financial help.
As Peters put away bags of groceries in her kitchen, she admitted she doesn’t know what will happen to her family. Like many patients, she worries about how she will pay for tests and follow-up care if the cancer comes back.
You are still reviewing collection notices in the mail and receiving calls from debt collectors.
He asked one if he had children. “He told me it was my decision to have surgery,” Peters recalled. “And I said, ‘Yeah, I guess I chose not to be dead.'”
KHN (Kaiser Health News) is a national newsroom that produces detailed journalism on health issues.