BRISTOL, Tenn. — Wendy Matney hesitated to tell her family not to call 911.
“It seemed almost selfish to say, ‘Please don’t call because we can’t afford this,’ ” said the 39-year-old home health aide, who has a form of epilepsy that causes frequent, sometimes violent, seizures.
Matney has been to the hospital enough, though, to know a trip means thousands of dollars in bills under the family’s high-deductible health plan. And she and her husband — struggling with more than $20,000 in medical debt — can afford no more.
Hit with a hospital lawsuit over unpaid bills, the couple are declaring bankruptcy, effectively giving up hope of moving out of their trailer and buying a house.
“I’m losing everything because of this,” Matney said.
The steep rise in health insurance deductibles over the last decade has saddled insured, middle- and working-class Americans with medical bills they can’t afford, a Los Angeles Times examination of job-based insurance shows.
The biggest impact, however, has been on people like Matney who have illnesses such as diabetes, cancer and epilepsy that require regular medications and consistent care.
As drug prices have skyrocketed and deductibles in job-based coverage have more than tripled in the last 12 years, soaring to an annual average of $1,350, these sick Americans now routinely pay thousands of dollars every year to get care they need. That has made being sick in the U.S. dramatically more expensive.
“It’s really a double whammy,” said Dr. Brian Callaghan, a University of Michigan neurologist who has studied the impact on people with neurological illnesses.
The financial strain is pushing millions of seriously ill Americans to ration their care, jeopardizing their health and even their lives.
In 2016, for example, Americans taking multiple sclerosis medications every month paid on average $3,708 a year out of pocket for the drugs. Patients in high-deductible health plans paid even more, with average annual costs of nearly $8,000, according to a study by Callaghan.
Fifteen years earlier, the out-of-pocket costs for those medications were $244 on average, adjusted for inflation.
The average patient with lymphoma, a common blood cancer, pays nearly $3,700 in the 12 months following the diagnosis, according to an analysis of commercial insurance data by Milliman, a national healthcare consulting firm. Patients with acute leukemia pay more than $5,100.
Most patients now diagnosed with cancer don’t understand how severe the financial strain will be, said Dr. Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research in Seattle.
Analyzing bankruptcy records and cancer registries in Washington state, Ramsey found that cancer patients were more than 2 1/2 times more likely to declare bankruptcy than people without the disease, even after accounting for differences in age, socioeconomic status and other factors.
“Suddenly, people find they owe hundreds or thousands of dollars,” Ramsey said. “If they are young or working in a low-wage job, they’re not going to be able to pay.”
Several Western European countries, including Britain and France, which have national health care systems, limit cost sharing for people with some chronic conditions, making prescription drugs available at no cost to patients.
Holland, which relies on private insurance, requires insurers to exempt primary-care visits from any cost sharing.
In the U.S., however, federal law generally prohibits high-deductible plans from exempting these services, forcing patients to pay for them in full until they meet their deductibles.
“What we’re doing makes no sense,” said David Grabowski, a health policy researcher at Harvard Medical School.
Grabowski’s work has shown that epilepsy patients like Matney who have high out-of-pocket medical costs were less likely to fill their prescriptions and more likely to end up in an emergency room or to be admitted to a hospital, leading to higher costs.
“We want these people to take their medications. That’s not only good for their health, it’s good for overall healthcare spending,” he said. “This is penny wise and pound foolish.”
Across the country, organizations that work with sick patients increasingly report being called upon to aid people who cannot afford care, despite having insurance.
“High-deductible health insurance may be OK for patients with means who can manage their expenses,” said Lisa Lacasse, president of the advocacy arm of the American Cancer Society. “For the majority of people diagnosed with cancer, they are deeply problematic.”
Susan Brown, who oversees the patient support program at Susan G. Komen, said most people who call the breast cancer group are seeking financial assistance.
“The stories we hear are heartbreaking,” she said. “People cashing in their college funds, taking on a second mortgage, maxing out their credit cards.”
Americans in a household where someone has a serious medical condition are twice as likely as healthier Americans to say they’ve cut spending on food, clothing and other household items to pay for care, according to a nationwide poll of people with job-based coverage conducted by The Los Angeles Times in partnership with the nonprofit Kaiser Family Foundation, or KFF.
One in eight covered workers in a household where someone is chronically ill reported having declared bankruptcy because of medical bills.
In 2013, she met Steve Matney while playing an online Facebook video game.
He’d worked for a dozen years at a Walmart distribution center, where he earned about $33,000 a year, budgeted carefully and avoided debt. Five years older than Wendy, Steve owned a trailer home and took care of his aging mother, who lived next door.
“He had such a sweet, caring nature,” Wendy remembered. “He was very much his own person … but at the same time, he was so supportive.”
The couple married in 2014.
Wendy didn’t realize that marrying and moving onto her new husband’s job-based insurance could prove financially ruinous for both of them.
Just a few months after the wedding, she had a major seizure — convulsing on the bathroom floor and struggling for breath. Fearing for Wendy’s life as her lips turned blue, Steve called 911.
An ambulance took her to a community hospital, where doctors ran tests and kept her overnight for observation.
The bills ran to thousands of dollars.
“It was definitely a shock,” Wendy said. “I guess I hadn’t realized how much it all cost.”
There would soon be more bills. Matney estimates she’s been to the emergency room several dozen times in the last five years, almost always after she lost consciousness and someone called an ambulance. The couple, whose deductible is now $5,500, pay what they can, she said. But the bills almost always go to collections.
Wendy has pleaded with her family not to call an ambulance and to wait for her seizures to pass. She’s tried to convince emergency room staff not to admit her to the hospital. She’s rarely been successful, though.
Last year, Ballad Health, a nonprofit that owns the local hospital, sued the Matneys over more than $11,000 in unpaid bills. After securing a court order, Ballad began garnishing a quarter of Steve’s salary, leaving him $663 every two weeks.
“That’s been hard,” Wendy said.
High costs increasingly push patients like Matney to skip care, physicians and researchers find.
At the Duke Cancer Institute in North Carolina, Dr. S. Yousuf Zafar said oncologists frequently see patients who have insurance but don’t follow through on therapy for fear of the costs.
“There are drugs that we know work,” he said. “But patients aren’t taking them.”
Zafar recalled a man with pancreatic cancer who elected to stop treatment. “He said, ‘I’d rather not have this chemotherapy because I don’t want to leave my family with tens of thousands of dollars in medical bills.’”