WHEN CANDACE HENLEY ​was diagnosed with colorectal cancer in June 2003, her fear was tempered by the knowledge that she had good health insurance through her job as a bus driver with the Chicago Transit Authority (CTA).

At the time, Henley was 36 and raising five daughters, ages 4 to 15, alone. She had pulled off the American dream: a single-family home with a backyard. “We had a great life,” she recalls. “We had great health insurance. [Everything] was as perfect as it could be.” Her problems began when she didn’t have enough savings to stay afloat financially after her cancer treatments left her unable to work.

Every family that faces cancer experiences the shock of learning that the disease is now at their doorstep. But once the diagnosis is made, paths can quickly diverge. The first fork in the road: whether you have health insurance and what type you have. The second: whether you have savings to cover deductibles and other out-of-pocket expenses.

For some, the emotional distress and day-to-day challenges of cancer will be buffered by financial security. For others, financial stress will make treatment more rocky and complicated. For still others, the last stop will be a depleted bank account, the loss of a home or bankruptcy.

With efforts underway to modify or repeal the Affordable Care Act (ACA), also known as Obamacare, many cancer patients have spoken out about how affordable health insurance kept them from financial ruin. Magnifying their voices are the surveys and studies that illustrate the devastating monetary toll a cancer diagnosis can bring. Researchers have attempted to capture this distress with the term “financial toxicity,” which places the effect of high treatment costs on quality of life on an equal footing with the toxicity of the treatments themselves.

Insurance Is Not Always Enough

Health insurance is supposed to act as a safeguard against high, unexpected health care costs. But that financial security blanket has increasingly been fraying. Not only has health insurance become more expensive, but studies show more of the costs have been transferred from employers to employees. The 2017 Employer Health Benefits Survey, released by the Kaiser Family Foundation/Health Research & Education Trust, found that the amount workers pay toward their family premiums has increased faster than the employers’ outlays. The survey found that workers paid an average of $5,714 toward the cost of an employer-sponsored family health plan in 2017, up from an average of $3,515 in 2009. Out-of-pocket maximums have also increased for many workers. In 2017, 57 percent of employees with an individual plan had an out-of-pocket maximum above $3,000; 31 percent did in 2009. In 2012, 34 percent of workers with an individual plan had an annual deductible of $1,000 or more; in 2017, it was 51 percent.

As employers transfer more costs to employees, a growing number of people with health insurance have found themselves paying high deductibles and facing high out-of-pocket costs relative to their income. People in this situation are called underinsured. In their 2016 biennial health insurance survey, the Commonwealth Fund, a health policy research foundation, found that 28 percent of working-age adults were underinsured in 2016, up from 23 percent in 2014. These people are not only small business employees. The survey, which was released in October 2017, found that 22 percent of workers in large firms were underinsured in 2016, compared to 8 percent in 2003.​

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Fumiko Chino, a radiation oncology resident at Duke Cancer Institute in Durham, North Carolina, and her colleagues interviewed 300 insured cancer patients about their out-of-pocket health care expenses. In a research letter published online Aug. 10, 2017, in JAMA Oncology, her group reported that more than one-third of the patients had out-of-pocket costs that were higher than they expected. Forty-nine (16 percent) of the cancer patients reported high or overwhelming financial distress and had health care costs that were consuming almost one-third of their income.

Chino understands firsthand these patients’ experiences. When her husband died from neuroendocrine cancer in 2007, at age 28, her grief was weighted by their unpaid medical bills. Chino’s husband (at the time her fiance) was in graduate school and had a student health insurance plan when he received his cancer diagnosis. The plan had an annual prescription drug limit of $5,000, which was less than the cost of the cancer drugs he needed. To pay the bills, the couple depleted their savings and relied on help from family members and friends, but it still wasn’t enough. Chino received a call from a debt collector while she was at her husband’s funeral.

“My husband was vastly underinsured, and that’s what made me interested in this problem,” says Chino. “Unfortunately, what I found in the course of my research is that we have an incredibly common story. Underinsurance in cancer care is a serious problem.”

Chino personally interviewed a majority of the 300 patients in the study. She says the stories she heard and the data she collected went beyond what she published in the research letter. Some patients, for example, admitted to not getting prescriptions filled or not taking their medication as often as they should have to save money.

“There is a certain population of people who are essentially compromising their own care in order to afford it,” says Chino. “And people are making sacrifices not just with their medication. They are also making personal sacrifices, like using their savings, going into debt and spending less on basics, like food and clothing.

“I talked to younger patients who were working full-time who told me they had to decide whether to use the savings they had for their kids to go to college to pay for their cancer care, so that maybe they could be there to see​ them go to college,” she says. “It’s just heartbreaking.”

The Impact of Underinsurance

Learn about the effects of not having enough insurance coverage.

The Burden of Debt

To treat her cancer, Henley had surgery that removed 95 percent of her colon. As a result, it was difficult for her to sit for hours at a time, which her job as a bus driver required. Driving also left her without quick or easy access to a bathroom. Unable to return to work, Henley went on medical leave. She still recalls the weekly amount she received from the CTA: $184.

‘I Felt Like a Failure’

In this vid​eo, Candace Henley describes how she pulled her life together afte​r losing her job and home following a cancer diagnosis.

Before her dia​gnosis, Henley had no problem handling her monthly mortgage and car payments. Now, she was juggling bills and watching her savings dwindle. She applied for federal Social Security Disability Insurance, but her application was denied. Friends, family and co-workers donated what they could to help with day-to-day expenses. Henley depleted her 401(k) retirement savings plan but still couldn’t keep up. The bank foreclosed on her house when she fell behind on the mortgage payments, and she and her daughters moved in with a family friend. “I felt like a failure as a mom,” she says. “My daughters were depending on me, and I felt like I was being punished. I would think, ‘What did I do that was so bad that this is my life now?’”

Every time she felt that things would never get better, Henley would think of her daughters. “I kept telling myself, ‘They are watching, and I have to teach them that no matter how bad you feel, you get up.’” Over the next decade, their situation gradually improved; she found a new job, got an apartment and started to get a handle on her bills. Along the way she became an advocate for colorectal cancer patients. Now she’s leading a foundation she started to increase colorectal cancer awareness in minority and medically underserved communities. Even so, she says, “I’m still recovering. We lost so much. It’s like losing time. And you can’t recover time.”

The Blue Hat Foundation

Candace Henley started her own faith-based colorectal cancer organization to provide resources for the underserved.

Tallying the Costs

In June 2017, as Congress appeared on the verge of dismantling the ACA, Eric Meyer, a technical writer and small business owner in Cleveland, went on his blog, meyerweb.​com, to write about his daughter Rebecca, who had been diagnosed with glioblastoma, an aggressive form of brain cancer, in August 2013. Rebecca died on June 7, 2014, her sixth birthday. “In those 10 months,” he wrote, “the total retail cost of her procedures and treatments was $1,691,627.45. Nearly one point seven million U.S. dollars.”

Meyer knew the precise amount because he had begun tracking the numbers in a spreadsheet. One statement they received for a portion of Rebecca’s treatments totaled nearly $400,000. The family had to pay only $215; the rest was covered by health insurance. “I remember looking at those figures and thinking, if we didn’t have this insurance we’d be in a world of hurt,” he says.

“People who have not been through it have no idea what this costs and how fast you can rack up amazing amounts of bills,” Meyer adds. “We paid so little because we happened to have really good insurance. If we didn’t, it would have been so much harder for us to deal with. We’d have launched a GoFundMe and the hospitals would have worked with us, but we would have been in medical debt for the rest of our lives. Because without these treatments, she had no chance at all.”

While Rebecca was being treated, Meyer and his wife met other families who did not have the level of security their insurance had provided. Some were so financially extended that, while traveling for their child’s treatment, they couldn’t afford to return home to visit their other children being cared for by family members. Their experiences led the Meyers to establish a nonprofit that provides respite vacations to families that have lost a child. “We did everything we could do,” he says, “and we still struggle with guilt about not being able to save her life.”

Rebecca’s Gift

Learn how one family established a nonprofit to send grieving families on a respite vacation.

The Bills Keep Coming

Meyer says it took him months to open the medical bills that arrived after Rebecca died. After her husband’s death, Chino also avoided the bills.

Chino’s husband had told her that he felt guilty about the debt he would leave behind. During her research interviews, she met many patients who felt the same way. “They were very stressed about potentially bankrupting not just themselves but their family, and potentially leaving them homeless or without any savings,” she says. “It is a huge strain on them. They are trying to balance their cancer care and the health of their family and the future of their family.”

It’s often suggested that patients talk to their doctors about the cost of care. Through her research, Chino found that patients fear “that if they talk about costs, their doctors will compromise their care, and they won’t get the care they need or deserve because the doctors are worried they can’t afford it.” In reality, she says, “the majority of people who talked to their doctors about costs of care found it worked.” Doctors often found ways to help reduce costs for these patients.

About 75 percent of the patients in Chino’s study had an incurable cancer (stage IV or metastatic recurrence), and many had family members in the room while she conducted her interviews. “Family members would say that they were willing to make these huge financial sacrifices, with the idea it could help more effectively treat their loved one’s cancer,” she says. “But the patients themselves would say they were not willing to make that sacrifice and potentially compromise the long-term financial health of their family.”

Chino decided to go to medical school after her husband’s death. While reading the researchon the financial stress associated with a cancer diagnosis, her thoughts often returned to his medical bills, which she had never been able to pay. When her research letter was published in JAMA Oncology, she was nervous about talking about her own experience, fearful the money she owed would put her back on the bill collectors’ radar. But, Chino says, there was “a silver lining.” Financial experts who had heard her interviewed on a national radio program contacted her to explain that, because she and her husband hadn’t shared property, the debt should have died with him. “I’ve been living with that shadow for 10 years,” she says, “and it’s a relief to think that maybe there will not be someone knocking at my door.”​

Sue Rochman, a medical journalist based in San Francisco, was formerly a contributing editor of Cancer Today.