PUBLISHED

Toxic Shock: Cancer Care Leaves Patients' Families Drowning in Debt, Even After Death

How one doctor's experience with the 'financial toxicity' of cancer care gave her a mission

A graphic op-ed on the financial toxicity of cancer care by two Duke doctors

Fumiko Chino and Nathan Gray

A young widow who lost her husband to cancer nearly drowned in grief and medical debt. Now Fumiko Chino is a cancer doctor who sees her own tragedy play out in other patients. Too often people are underinsured and financially burdened by the cost of cancer care. Faced with a choice between their money and their lives, some patients lose both. Healthcare leaders must work to find ways to reduce costs and maintain policies that protect people from shoddy insurance. We must stop illness from triggering financial ruin.

Chino and Nathan Gray were colleagues at Duke when they began collaborating on this graphic op-ed. 12 years ago, I had a dream job as an art director in Houston. My fiancé, Andrew, was finishing his doctorate in robotics. The future stretched out forever in front of us.

When he started to vomit and lose weight, we were blindsided. But we were young otherwise healthy and both had health insurance. We never imagined what was to come. -- Chat bubble saying, "You OK in there?"

He was diagnosed with neuroendocrine cancer .. and we quickly discovered how little his insurance covered. Within a month, we had exhausted his annual prescription drug benefit and started paying out of pocket.
Despite his cancer and our empty pockets, we got married and tried to keep moving forward with our lives. After a ceremony in my parents’ living room, we headed to an Italian chain restaurant. Meanwhile, the steady floodwaters of tests, treatments and bills continued to rise.

Soon we had passed his health insurance’s $500,000 lifetime limit. I emptied my retirement savings, but bills kept crashing over us, week after week, threatening to drag us under.

We borrowed money and at one point had family smuggle low-cost medications across the border from Canada. Even with our safety net, we were struggling. Just when our fall into financial ruin seemed hopelessly guaranteed, Andrew managed to.get a faculty job in Michigan with health insurance.
Cancer took him only three months after we arrived in Michigan … and a lifetime too soon.
He never even got to move into his new office. It wasn’t until afterward that I realized the move to Michigan was one last quest, a desperate mission to find decent health coverage and life insurance for my sake.
Andrew was gone, but the bills were not. The storm clouds of his medical debt still haunted me. Collectors were relentless … even calling my cell at his funeral.
After he died, I felt adrift … but I knew if I stopped treading, I’d go under. I had to pick a direction and start swimming or drown in the grief and bills.
I decided to go to medical school. I was fortunate to have the chance to start over. Most people aren’t so lucky. At the time, though, I definitely didn’t feel lucky. I was just trying to survive.
I didn’t head to med school with a mission. A mission found me. As our lecturer described the “financial toxicity” of cancer care, I finally had a phrase for what had happened to my life. Debt was the unshakable, last toxic side effect of Andrew’s medical treatment.
I found out how normal our e3xperience has become in the US healthcare system. 40% of Americans have depleted their entire life savings within two years of a cancer diagnosis. Medical costs drive one in four patients to place their cancer treatment at risk by skipping appointments, not filling medications or avoiding treatment altogether. Financial stress erodes our physical, mental and social health. These are the unmentioned poisonous side effects of our medical treatements.
As individuals and as a nation, we’re drowning in medical costs. Americans borrowed more than $88 billion to pay for health expenses last year. No one seems to know the way out, and even meager protections – like eliminating lifetime caps and protecting people with preexisting conditions — seems constantly endangered. Terrified patients continue to wrestle with unthinkable choices between medical care and food or shelter.
When asked, nearly half of patients with cancer said they were willing to go bankrupt for medical care.
More than a third of those asked were willing to sell their home to pay for treatment.
Amid the terror of life-threatening illness, such sacrifices seem like the only viable option in a cruel game that forces you to choose between bankruptcy and death.
But now I know that at the end of the day … there are many roads that lead to both.
Today, I’m an oncoloigist and researcher, working alongside others to highlight the ways that medical costs affect people … but it will never be just a job. I can’t forget how I got here. I see my own ruin played out again and again in the lives of patients I see.
Until we can figure out how to float our nation’s floundering healthcare vessel, we need to make cost part of the conversation. For example, someone could have told us that the blood thinner costing us $6,000 a month could have been replaced with a pill that was almost as effective and cost on $5 a month.
And when lawmakers and politicians threaten to remove the already flimsy health insurance protections now in place – the kind that prevent what happened to us – we must act. We need space for transparent, unashamed dialogue about costs with our doctors, and doctors need ways to know what treatments will cost when they recommend them.
I’ve been told I can’t legally be hounded for Andrew’s medical debts. But that doesn’t stop the calls. With every unknown ring, I worry that Andrew’s debt has been repackaged and sold to another collector, eager to try to pick up a slice of our ruin.
Would we have allowed ourselves to spiral into debt if we had honest conversations about what it would cost us in the end. I don’t know. Perhaps our fall could’ve been smaller, gentler. Perhaps one day people won’t be asked to mortgage their future for a chance at health.
Sources. Death or Debt? Am J Med 2018 Oct. Harris Insights and Analytics www.asco.org. West Health, Gallup. News.gallup.com. Going for Broke. J Oncol Pract. Sept. 2018.