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A new study shows that cancer patients are spending far more money than they expected on their treatment. That's true even for those with health insurance. The financial burden can be overwhelming. It can even affect their health. One cancer researcher knows all about this from firsthand experience. NPR's Alison Kodjak has her story.
ALISON KODJAK, BYLINE: Fumiko Chino and her fiance, Andrew Ladd, were living in Houston, looking forward to a bright future together. She was art director at a TV production company, and he was a Ph.D. candidate at Rice University.
FUMIKO CHINO: He's brilliant. He was so funny. We had such a great partnership.
KODJAK: And then Andrew got sick.
CHINO: He had nausea. He had vomiting. He had abdominal pain. He had weight loss over a period of about six months.
KODJAK: Turns out it was cancer - a neuroendocrine carcinoma, to be exact. It's a cancer that can strike all over the body, and it's tough to treat. They started treatment, went ahead and got married. And he kept working toward his doctorate. Andrew had health insurance. It was the standard policy offered to graduate students back in 2006. But it turns out it didn't cover much.
CHINO: Basically - I like to think of it as sham insurance.
KODJAK: It took less than a month for him to hit the policy's $5,000 cap on prescription drugs. So they paid cash for anti-nausea pills and blood thinners. Then they reached the policy's lifetime cap. But the cancer treatment didn't stop, and the bills kept coming.
CHINO: We borrowed money. We just went into debt. And the sum total of dollars that we ended up owing was hundreds of thousands of dollars by the end of his treatments.
KODJAK: Andrew got progressively sicker. Chino emptied her 401k account and quit her job, and they moved in with her parents.
CHINO: The stress and overwhelming, crushing defeat of these bills that would come in every week - it had an effect on our quality of life. I can guarantee you it.
KODJAK: Despite his illness, Andrew landed a job as a professor at the University of Michigan. It came with health insurance, and he continued his treatment there. But he never moved into his office. Three months later, he died. Chino was left with an ocean of debt.
CHINO: The type of debt that we owe is something that is like a black hole I could just keep throwing money into and feel like I haven't made a big difference.
KODJAK: And that was a turning point. Chino abandoned her earlier career and enrolled at Duke's medical school. One of her professors was Yousuf Zafar, an oncologist who also studies what he calls financial toxicity.
YOUSUF ZAFAR: The financial toxicity of cancer treatment is impacting our patients' financial well-being. It's impacting their quality of life. And it's impacting their quality of care.
KODJAK: Because of the Affordable Care Act, insurance companies no longer have lifetime caps. But Chino and Yousuf's new study published today in JAMA Oncology shows that cancer patients, even with insurance, spend far more than they anticipate for their health care expenses. On average, they spend about 11 percent of their incomes on medical costs after paying premiums, and some patients spend as much as 30 percent, the study shows. Those patients report that financial burden causes overwhelming distress. And that's something Fumiko Chino still relates to.
CHINO: I still owe the debt. I stopped answering phone calls from debt collectors, so...
KODJAK: Alison Kodjak, NPR News.
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