Ten years ago, Fumiko Chino was the art director at a television production company in Houston, engaged to be married to a young Ph.D. candidate.
How she got from there to here is a story about how health care and money are intertwined in ways that doctors and patients don't like to talk about.
But Chino is determined to do so.
"I think of him every day," Chino says of her late husband, Andrew Ladd. "It drives me to do the type of research that I do — that's looking at the financial toxicity of cancer care."
Chino is co-author of a research letter, published Thursday in JAMA Oncology, that shows that some cancer patients, even with insurance, spend about a third of their household income on out-of-pocket health care costs outside of insurance premiums.
It's an issue Chino knows well.
In 2005, before they were married, Chino and Ladd were living together in Houston. She was working in entertainment, and he was on the verge of earning his doctorate in robotics at Rice University. Each had medical insurance – she through her job, he through the school.
Then he started to vomit and lose weight.
He was diagnosed with neuroendocrine carcinoma, an aggressive cancer of endocrine cells that can strike in a variety of places in the body and can be hard to treat.
It was a huge blow for the young couple, still in their 20s, with promising careers ahead of them. Still, they looked to the future and decided to go ahead with their wedding.
But as Ladd's treatment moved forward, a harsh reality hit. His student insurance didn't cover much.
"So paltry," Chino says. "Basically, I like to think of it as sham insurance."
In less than a month, they reached his $5,000 prescription drug limit and began paying $300 out of pocket for his anti-nausea medications and blood thinners.
Ladd was getting sicker but trying to keep up with his work. Chino emptied her retirement savings and quit her job to care for him.
"Ultimately, I had to take care of him. He was getting weaker and weaker," she says. "It was an overwhelming strain on us as a young couple. This is not what we thought our lives would be."
Soon, his medical costs surpassed his insurance policy's $500,000 lifetime limit. But the bills kept coming.
"The stress and overwhelming crushing defeat of these bills that would come in every week — it had an effect on our quality of life," Chino says.
They moved in with her parents, borrowed money and even considered moving to Canada to get care.
"At a certain point, we realized it was unsustainable," she says. "We knew it was coming. The cancer facility where he was getting his primary treatment was going to turn off the spigot."
Despite his illness, Ladd landed a job as a professor at the University of Michigan. It came with health insurance, and he continued treatment there.
But he never moved into his office. Three months into his time at Michigan, he died.
Chino was left with an ocean of debt. She estimates it's in the hundreds of thousands of dollars.
That's when she found a new mission in life. She enrolled in Duke's medical school and teamed up with Dr. Yousuf Zafar, who has made a specialty out of studying and writing about "financial toxicity," which he describes as the toxic effects of financial strain from health care costs. He's lead author on the JAMA Oncology study that Chino worked on.
Chino and Ladd's story unfolded before the Affordable Care Act was passed, when health insurance markets were far less regulated. Today, policies can't carry annual and lifetime benefit limits.
But that doesn't mean people don't face financial hardship because of medical costs. Even as insurance coverage has expanded, deductibles and copays on many policies have risen, leaving patients to shoulder more of the financial burden for their health care.
The JAMA Oncology study shows that on average, cancer patients spend about 11 percent of their income on out-of-pocket health care costs, not including insurance premiums. But as their costs rise, patients become less likely to want to pay their bills.
"Patients are frustrated," Zafar says. "They believe they've got insurance. They believe they paid for insurance and that insurance should fully cover their cancer care."
He says doctors need to talk with patients about the costs of their treatment as well as the side effects and prognosis.
"We need to do a better job explaining to our patients how much benefit they can get from treatment," he says. "But also how much harm they can face, whether that harm is physical toxicity or financial toxicity."
Some patients don't talk with their doctors about costs, the study shows, because they fear they will get substandard care.
Chino says she wishes she and her husband had had those conversations.
"It was not part of my husband's care, and it could have changed things," she says.
Ten years after Ladd's death, Chino is still dealing with the aftereffects.
"I still owe the debt," she says. "I stopped answering phone calls from debt collectors."
ARI SHAPIRO, HOST:
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. Transcript provided by NPR, Copyright NPR.