Jeni Rae Peters made promises to herself while lying awake at night two years ago after being diagnosed with breast cancer.
“My kids had lost so much,” said Peters, a single mom and mental health counselor. She had just adopted two girls and was a foster family to four other children. “I swore I wouldn’t force her to have another parent.”
Several surgeries, radiation, and chemotherapy controlled the cancer. But despite insurance, Peters was left with more than $30,000 in debt, threats from bill collectors and more anxious nights thinking about her children.
“Should I get her from day care? Do I stop their schooling and tutoring? Don’t I help you with college?” Peters wondered. “My doctor saved my life, but my medical bills are stealing my children’s lives.”
Cancer kills approximately 600,000 people in the US each year, making it a leading cause of death. Many more survive due to breakthroughs in drugs and therapies.
But the high cost of modern day care has left millions with a devastating financial burden. According to a KHN-NPR investigation into America’s spiraling medical debt problem, this has forced patients and their families to make heartbreaking sacrifices even as they face a serious illness. The project shows that few suffer more than cancer patients.
About two-thirds of adults with healthcare debt who have had cancer themselves or in their family have reduced their spending on food, clothing or other household items, according to a survey conducted by KFF for this project. About 1 in 4 have filed for bankruptcy or lost their home through eviction or foreclosure.
Other research shows that patients from minority groups are more likely to experience financial hardship from cancer than white patients, reinforcing the racial disparities that overshadow the US healthcare system.
“It’s debilitating,” said Dr. Veena Shankaran, a University of Washington oncologist who began studying the financial impact of cancer after seeing patients being ruined by medical bills. “Even if someone survives cancer, they often can’t get out of debt.”
Shankaran found that cancer patients are 71% more likely than Americans without the disease to have bills in collections, face tax liens, mortgage foreclosures, or experience other financial setbacks.
Oncologists have a name for it: “financial toxicity.”
“Sometimes,” Shankaran said, “it’s difficult to think about what the system is asking patients to do.”
In the three-bedroom Rapid City home that Peters shares with her children and a friend, there’s no time to think about those worries most days. There are skating lessons and driving tests and countless meals to prepare. Teenagers go in and out, chattering about homework and tattoos and driving. The little ones gather at a small kitchen table.
Peters, who has tattoos and dyed her hair purple earlier this year, never intended to start a family. In her late 30s, she wanted to do more for her adoptive community, so she took in foster children, many of whom were from the nearby Pine Ridge Indian Reservation. One of her daughters was homeless.
“Foster children are amazing people,” she said. “I joke about being the most reluctant parent to the most amazing kids ever. And I can help raise these little people healthy and safe.”
In the spring of 2020, the safe world that Peters had carefully nurtured was destroyed. She was diagnosed with stage two breast cancer.
Within a few weeks, she had an intravenous line inserted into her chest. Surgeons removed both of her breasts, then her ovaries, after tests showed she was also at risk for ovarian cancer.
Cancer treatment today often involves a costly, debilitating march of procedures, IV fluids, and radiation sessions that can physically and emotionally drain patients. It was scary, said Peters. But she has her children gathered around her.
“We talked a lot about how they lost any siblings or parents or other relatives,” she said. “I just had to lose my boobs.”
Much more difficult, she said, are the endless and confusing medical bills.
There were bills from the anesthesiologists, the hospital and an operating center. Overall, Peters estimates her medical debt at over $30,000.
Debts of this magnitude are not uncommon. Nationwide, about one in five 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 involved with cancer are also more likely than others with healthcare debt to owe large sums of money and say they do not expect to ever be able to pay it back.
This debt has been fueled in part by the advent of life-saving therapies, which also come with staggering price tags. The National Cancer Institute calculated that the average cost of medical care and medication exceeds $42,000 in the year following a cancer diagnosis. Some treatments can exceed $1 million.
As a rule, most costs are covered. But patients are increasingly looking for big bills due to deductibles and other co-payments in the healthcare plan. According to an analysis by consulting firm Milliman, the average leukemia patient with private health insurance can expect to pay more than $5,100 in the year after diagnosis. Milliman noted that the average blood cancer patient covered by Medicare can expect to spend more than $17,000 out of pocket in the year after diagnosis.
More broadly, the KHN-NPR investigation found that about 100 million people in the US now owe medical or dental bills. Poor health is among the strongest predictors of debt, with this debt concentrated in the parts of the country with the highest rates of disease.
For her part, Peters has had seven surgeries since 2020. During this time, she had health insurance through her employer. However, as with most plans, she had to pay thousands of dollars out of her own pocket.
Within weeks of her diagnosis, the bills rolled in. Then collectors started calling. A call came in while Peters was in the recovery room after her double mastectomy.
Peters faced more bills when she changed jobs and changed her insurance later that year. The deductible and cap on their expenses will be reset.
In 2021, the deductible and excess limit will 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 the chemotherapy that was weakening her bones – she was charged with thousands more.
“I don’t even know how much I owe anymore,” Peters said. “Sometimes it feels like people are sending me random bills. I don’t even know what they are for.”
Before he got sick, Peters was making about $60,000 a year. Together with the care allowance she receives, it was enough to provide for her children, but the family budget was always tight. Peters doesn’t own her house and has next to no savings. Now, she said, they live on the edge.
Peters took on extra work to pay some of the bills. She works back-to-back five days a week at a mental health crisis center and a clinic, where she counsels teenagers, some of whom are having suicidal thoughts.
But Peter’s credit score has dropped below 600. And the bills pile high on the microwave in her kitchen.
“I’m middle-class,” she said. “Could I pay for some of these? Yes, I think I could.”
That would require compromises. She could get car insurance for her teenage daughter who just got her driver’s license. Quitting skating for another daughter would net an additional $60 a month. But Peters hesitates.
“You know how it feels to be a foster kid and get a gold medal in ice skating? Do you know what kind of citizen they could become knowing they are special?” she said. “It seems to be a myth that you can pay for anything. You can not.”
About 4 in 10 with debt have taken money out of a retirement, college or other long-term savings account, according to the KFF survey; about 3 out of 10 have moved in with family or friends or otherwise changed their living situation.
Kashyap Patel, executive director of Carolina Blood and Cancer Care Associates, said the South Carolina practice has found that patients are turning to food banks and other charities to make ends meet. A patient lived in his car. About patients who need some kind of financial help, Patel appreciated. Nevertheless, many go into debt.
The lingering impact of medical debt on cancer survivors and their families is not yet fully understood by researchers, said Robin Yabroff, an epidemiologist at the American Cancer Society.
“What does it mean for a family to liquidate savings, use up college funds, or sell their home?” Jabroff said. “We just don’t know yet.”
As Peters put away bags of groceries in her kitchen, she admitted she doesn’t know what will happen to her family. She worries about how she will pay if the cancer comes back. She’s still digging through sent reminders and taking calls from collection agencies.
She asked a debt collector if he had children. “He told me it was my decision to have the surgery,” recalls Peters. “And I said, ‘Yeah, I think I’ve made a choice not to be dead.'”