What Emily Suess remembers through the fog of brain surgery and cancer treatment are the zeroes—five of them—and the words “patient obligation.” She panicked and threw the letter into the trash.
That was in 2017, a little more than two years after Suess, now 41, had begun experiencing fatigue, difficulty walking and—worst of all—unrelenting, full-body pain. A doctor diagnosed her with fibromyalgia and prescribed the antidepressant Cymbalta. But her husband, Dan Poehlman, didn’t buy it. His mother had multiple sclerosis. He thought he recognized the signs.
The couple convinced a doctor to perform an MRI. It wasn’t MS.
The scan discovered a mass a little larger than a golf ball on Suess’ brainstem, which regulates heart function, breathing and pain. A biopsy revealed a slow-growing tumor known as a grade II diffuse astrocytoma. As she started chemotherapy and radiation, her oncology team sent the tissue to FoundationMedicine, which conducts genetic testing on cancers to help determine the best treatment options.
A month later, Suess received what she presumed—perhaps incorrectly—was a bill for $100,000. Overwhelmed and emotionally exhausted, she arrived at a solution that has since become her philosophy: If she couldn’t pay a bill, she’d ignore it.
“It’s like blood from a turnip, right?” Suess said. “I was going through chemotherapy, I had brain cancer, and—pardon my language—I just [expletive] quit and started throwing [bills] away.”
There were a lot of bills: copays and coinsurance for chemo and radiation, emergency room trips, countless visits to doctors and specialists, 21 MRIs and counting.
Over the last four years, Suess has accumulated more medical debt than she can track. Her once-excellent credit is ruined, her credit cards are maxed, and, facing another round of cancer treatment, she’s begging for help on GoFundMe, though in the first two months she barely put a dent in her $100,000 goal. The calls from collection agencies keep coming; she keeps blocking their numbers.
Suess isn’t alone.
She played by the rules. But she’s still buried in debt.
“I cannot focus on it because it distracts from everything,” Suess said. “When I was doing chemo and also thinking about how miserable I was, and also about all this debt I was racking up, and if I die, that debt’s going to be passed on—it’s too much for any person to deal with, to confront head-on.
“If I think about how much I owe, it’s just crushing,” she continued. “I would never have a happy moment in whatever time I have left.”
Given everything that’s happened since, there’s irony in the fact that Suess and Poehlman married for health insurance.
Both bloggers, they met online in 2009. She was living in Indianapolis and he in Milwaukee. To visit her, he began making the four-hour drive in his Jeep with no air conditioning. A year later, he moved in.
In 2013, Suess was offered a technical writing job at an Urbana, Ill., company that provided benefits to domestic partners. Poehlman, 53, has had severe psoriasis since college, rendering him unable to work consistently. He needed insurance. That wasn’t the only reason she took the job; she liked the corporate culture, she says. But it was a consideration.
After they relocated to central Illinois, however, Suess discovered that establishing a domestic partnership’s bona fides involved a lot of paperwork. Getting a marriage certificate was easier. On November 12—11/12/13—they went to the courthouse.
The newlyweds planned on her being the breadwinner. Beyond her day job, she also freelanced. Her writing is pointed and witty, conversational and self-effacing, on her blog and in her serialized memoir. Back then, Suess had the energy to make ends meet. But in February 2017, she was diagnosed with cancer.
Almost immediately, she ran into the medical debt buzzsaw.
A month after surgery, Suess says she received a letter from her then-employer’s insurance company, written in the usual jargon, telling her it had denied $100,000 in claims. Suess assumed the amount was the cost of her tumor’s genetic testing.
In hindsight, Suess says, she likely misinterpreted the paperwork. In 2017, the list price for the test was $5,800—and a few weeks later, FoundationMedicine sent a bill for a little more than that amount.
It didn’t matter. She couldn’t pay. Her insurance had refused to cover the test her oncologist ordered, and, like many overwhelmed patients, Suess lacked the wherewithal either to appeal or ask whether FoundationMedicine had a patient assistance program. (The testing company, based in North Carolina’s Research Triangle Park, declined to comment on Suess’s billing situation.)
Suess had quit her job and gone to St. Louis for five weeks of chemotherapy and radiation, followed by months of adjuvant chemotherapy back home in Urbana. If her treatment worked, her symptoms wouldn’t get worse, but they wouldn’t get much better, either. And she wouldn’t be able to work, which meant losing her employer-sponsored coverage.
So Suess purchased a plan from Blue Cross Blue Shield on Illinois’ Affordable Care Act (ACA) marketplace with premiums she could afford. But when she went to buy her chemotherapy drug, the pharmacy wanted $1,700, her deductible, she recalls. She put it on a credit card.
A reaction to that chemotherapy landed Suess in the emergency room. That produced another bill, this time because of coinsurance—“probably a grand or two,” she said. She didn’t—couldn’t—pay that one, either.
After two months with ACA coverage, Suess’ application for Social Security Disability Insurance (SSDI) benefits was approved, making her eligible for Medicaid. Overnight, her copays for prescriptions and doctors’ visits became relatively manageable, seldom more than $15 apiece.
Suess and Poehlman live on the $2,200 a month she brings in from SSDI and long-term disability benefits from her last job.
But after two years, SSDI recipients are automatically enrolled in Medicare, which comes with monthly premiums for hospital and drug coverage—combined, about $165—as well as higher coinsurance costs for doctors’ visits and MRI scans and copays for drugs.
Those increased costs have forced her to alter her medications. Suess now takes amitriptyline—liquid nortriptyline, her preferred tricyclic antidepressant, is too expensive with Medicare Part D—to calm her nerve pain. She’s been cutting her generic Ritalin dosage—to battle chronic fatigue—in half to save money.
“It’s 45 bucks a month, which maybe doesn’t sound like a lot,” Suess said. “But when you live on SSDI, it’s a whole lot of money. I feel like, well, I’m tired. I guess I’m not dying from tired.”
She says she won’t refill the medication.
Early on in her treatment, Suess says, the hospital in Urbana called about setting up a payment plan, and a social worker in St. Louis gave her a business card. She didn’t follow up.
“But so much of that stuff right after brain surgery is a complete blur,” Suess said.
Eventually, she says, she did apply for copay assistance from Medicare, and was denied. She makes too much money.
The ACA was designed to prevent catastrophic bills by providing access to quality insurance. To some degree, it’s worked. Multiple studies have linked the ACA to a decline in bankruptcy filings and unpaid medical bills among low-income adults.
But it didn’t eliminate the problem. According to the U.S. Census Bureau, more than 16 percent of insured households carry medical debt. Among the culprits are skyrocketing deductibles and copays, as well as surprise out-of-network bills.
The beneficiaries: debt collection agencies. Healthcare providers first try to collect debts themselves. If they’re unsuccessful, they write off the debt as a loss and sell it to a collection agency for pennies on the dollar. Whatever the collection agency recoups, it keeps.
Today’s healthcare market resembles the subprime mortgage bubble of 15 years ago, says Allison Sesso, the executive director of the nonprofit RIP Medical Debt, which also buys debt from providers on the cheap, then forgives it.
“We’re allowing people to have insurance coverage they can’t actually afford [to use],” Sesso said. In other words, they can manage their monthly premiums but not out-of-pocket expenses such as copays, deductibles or coinsurance.
Seventy-five percent of those in medical bankruptcy had insurance, according to RIP.
“I’m on a crusade to take the shame out of [medical debt] and to say, ’It’s the system, it’s not you,’” Sesso said. “This is very much a rigged game, not an individual’s fault.”
Suess has never asked about her prognosis. She doesn't want to know.
Still, brain cancer is brain cancer.
In January 2021, an MRI showed that her tumor had grown—probably. They needed another scan to be sure.
That MRI, in April, confirmed it: The tumor had grown, Suess’ oncologist told her.
But maybe not. A neuro-oncologist said the scan might be picking up radiation necrosis. Her team decided to see if yet another MRI, in July, yields clarity. Until then, they wanted her to start low-dose chemotherapy.
Suess found the prospect depressing. She was already an emotional wreck. In March, her father died.
“I don’t disagree with their recommendation,” Suess wrote on April 30. “But I was just starting to see some daylight after losing my dad, and now I’m preparing to be broke, fight insurance all over again, and just generally have no energy to even wipe my own ass.”
Four days later, she launched the GoFundMe, asking for $100,000. The chemo, she estimated, will land her in Medicare’s donut hole, the coverage gap in which patients are on the hook for even more of their prescription costs. Whatever she and Poehlman raise will also go toward travel between Urbana and St. Louis for treatment and paying down their credit cards.
As of mid-June, their campaign had garnered just $2,155.
Suess doesn’t expect her campaign to reach its ambitious goal. Rather, she hopes it will send a message: “Maybe someone will look at that giant, scary number and think, ‘What if it was me?’” she wrote. “Because it totally could be.”
Today Suess and Poehlman have no idea how deeply they’re in debt. The actual number no longer matters, he says. On June 19, two more letters arrived from collection agencies, this time demanding $94.43 and $347.68.
“You get to a point where it could have been $150,000 or $1 million,” Poehlman said. “It’s like, I grew up in Wisconsin. There’s not much difference between 20 below and 40 below. You can’t really address it in terms you can quantify. It’s just cold. It just becomes damn cold.”
Jeffrey Billman is an award-winning investigative journalist based in North Carolina.
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