No guarantees: 3 tales of insurance disaster

JoNel Aleccia Health writer • Profile • E-mail

As the mother of a toddler who survives only because of the breathing tubes up his nose, the feeding tube in his gut, and the expertise of doctors in three cities, Courtney Elliott is keenly aware of the high costs of medical care — in every sense of the word.

Until her son, Linden, 2, was born with mitochondrial disease, a rare genetic disorder, the 28-year-old Tennessee woman had no idea that a bright, energetic child could hover constantly on the edge of death.

And she certainly didn’t know that a family with good income and excellent health insurance could be devastated by out-of-pocket medical fees that top $25,000 a year.

“We were very naïve, even dumb,” said Elliott, whose husband, Isaac, also 28, is a mechanical engineer with Bechtel Jacobs Co., a government contractor in Oak Ridge, Tenn. “I didn’t even know you had medical debt if you had insurance.”

The Elliotts are not alone. They were among more than 1,200 msnbc.com readers who shared stories of medical billing disasters in response to the site’s Dose of Reality health care series. Like much of the national debate on health reform, many stories focused on the plight of the nearly 46 million Americans who face daunting bills because they have no insurance coverage at all.

‘Why do I have to suffer financially as well?’
More surprising, however, were the tales of medical debt that came from people who said they knew that health insurance was important — and took steps to make sure they had it. For three families in particular, finding out that their medical coverage wasn’t enough, that it didn’t exist when they needed it most, or that it ended with the loss of a job was as shocking as it was shattering.

This is the first installment in an occasional series of stories and videos exploring health care concerns as chosen by our readers. We asked you to vote on which health care story you wanted us to cover. The winner, with nearly 4,000 votes: Medical bills ruined my life! After hearing and confirming your stories, now we're sharing them with our audience. Next, it's your turn to continue the conversation: Tell us what you think on Newsvine, or e-mail us at And be sure to vote on the health care story you want to read next.

“You just want to say, ‘It’s bad enough having a kid with a horrible disease, why do I have to suffer financially as well?’” said Elliott.

That distress is shared by Michele and Kevin Thomas, Detroit-area newlyweds who lost their jobs this year to a failing regional and national economy. Michele Thomas had health coverage through her job at a furniture store until she was laid off in April. She was searching for a policy she could afford on her unemployment compensation when she developed a severe gall bladder infection and needed emergency surgery. Now the pair, still searching for work, face $15,000 in bills they can’t pay.

Those worries are echoed by Duane Thayer, a 51-year-old Colorado man who fell off a ladder putting up Christmas lights last year and nearly severed his left foot. He thought he had coverage for nearly $500,000 in medical bills, but he says the insurance company denied his claims, in part for a single late payment and in part because they said the surgery he’d had for a club foot as a child counted as a “pre-existing condition.”

Most coverage comes from jobs
About 159 million people in the United States got their health insurance last year through employer-sponsored health insurance, according to the latest data from the Kaiser Family Foundation. Another 14 million people bought insurance through private plans. Most of the rest who have insurance are covered by the government through Medicaid or Medicare.

For most customers, that system works just fine. But for some, simply having health insurance is no guarantee they can pay for health care, noted Len Nichols, a health economist at the nonpartisan New America Foundation. He’s a vocal advocate for insurance reforms now being crafted in Congress, so long as they make U.S. health care cheaper, more accessible and higher quality than it is now.

In part, the push for health reform is aimed at fixing a health insurance system that can financially ruin Americans who face sudden illness or injury. In 2007, nearly two-thirds of all bankruptcies in the U.S. were tied to medical debt, and nearly 80 percent of those who filed for protection were insured at onset of illness, according to a June study in the American Journal of Medicine.

“Basically, no one’s coverage is secure,” said Nichols. “A large number of people have not had a disaster in the health care system, so they don’t know how bad it is. It could happen to any of us at any time.”

For three families who responded to msnbc.com, it already has. Here are their confirmed tales of medical billing disaster.

Sick child ravages family finances
Before their second child was born, Courtney and Isaac Elliott shunned most things medical and didn’t understand why anyone wouldn’t. They had a healthy little girl, Aniyah, now 5, and good insurance provided by Aetna through Isaac’s job.

“I ate all organic and I never took any medicine and I had a medication-free birth,” said Courtney Elliott, who goes by the nickname “Courey.” “I had my baby at home.”

Linden arrived on Dec. 15, 2006, a dark-haired, dark-eyed baby who within days revealed severe problems. He had trouble breathing and needed surgery to correct a malformed larynx.

He couldn’t swallow well, and breast milk wound up in his lungs instead of his stomach. Within weeks, he needed to be fed solely through a tube. Other puzzling problems emerged as well: He couldn’t regulate his body temperature, he had trouble with motor skills, his bowels didn’t work right.

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Results of a muscle biopsy confirmed his parents’ worst fears: Linden had mitochondrial disease, a rare genetic disorder that often leads to severe disability — and death.

“He could live 10 years or he could live 10 days,” Elliott said of Linden’s prognosis.

The disease results from the failure of the mitochondria, the part of human cells responsible for processing oxygen and energy.

It’s a devastating medical diagnosis that conjures for parents an endless cycle of care. And it’s a devastating financial diagnosis as well.

“It’s not possible, emotionally or financially, to prepare to have a child as ill as Linden,” said Linden's specialist, Dr. Mary Kay Koenig, assistant professor of pediatric neurology at the University of Texas Medical School at Houston.

The family must travel from Tennessee to Texas at their own expense three or four times a year to see Koenig, one of the nation’s few specialists in mitochondrial disease.

At first, the family thought the medical expenses would be no problem. Isaac Elliott earns $72,000 a year at Bechtel Jacobs and his generous insurance covers 100 percent of services after initial co-payments.

But like many families coping with chronic illness, the Elliotts were surprised to learn that the co-pays for Linden’s condition would be extensive, unrelenting  — and a constant financial drain.

“Each time he has a tube change, it’s $150. Each hospital visit is $250. Each emergency room visit is $100. Each surgical procedure is $100,” Elliott said. “In the past 30 days, we’ve had two ER visits, a hospital stay, his prescriptions.”

The Elliotts spend at least $2,000 a month on out-of-pocket costs for Linden’s care, and often more. That leaves little for anything but the most basic family expenses — and sometimes not even those.

Video   ER visit plunges laid-off woman into debt Oct. 23: Msnbc.com reader story: An unemployed Michigan couple struggles with piling medical debt and dashed hopes of buying a house and starting a family. msnbc.com

“I didn’t pay my electric bill this month and I didn’t pay my gas bill this month,” admits Elliott, who must stay home to take care of Linden. “We live paycheck to paycheck.”

They’ve managed to buy a tidy house in a vine-covered east Tennessee neighborhood thanks to a no-down-payment loan, but their furniture is well-worn and sparse. They rarely eat out, except when they’re in the hospital, and they confine family outings to free trips to playgrounds or parks.

There are times, Elliott adds, when she can’t afford all of Linden’s medications, even with generous help from relatives.

“There’s no worse feeling than having to weigh your child’s needs vs. what you can afford,” she said.

Still, Linden is hardly the sum of his symptoms. The sturdy, 34-pound toddler has a quick smile and verbal skills that test at a 4-year-old’s level.  His vocabulary includes words like “duodenum,” and he proudly shows off his stuffed ape, Chunky Monkey, who also sports a hospital bracelet and a tube in his tummy.

When he gets a little wild, Linden will hitch a ride on his IV stand, scooting with one foot, then rolling down a hospital hallway.

When the deep dimples fade, however, there are often flashes of pain. Linden tires quickly, retreating to the comfort of a pacifier and his mother’s arms.

“Owie!” the toddler cries as a nurse tests his blood to prepare for surgery. “I don’t like pokes!”

An operation on Oct. 12 was aimed at installing a port in Linden’s shoulder to allow fast regulation of his blood sugar. Without it, his glucose level has been vacillating wildly, creating constant risk of coma — or death.

Elliott says she never knows whether to expect a normal day or an emergency. Some children with mitochondrial disease have lived to adulthood, but others die very young.

“I think it’s very difficult for me as a mom to know that there’s nothing I can do,” she said. “I can try my best and he still might die. That is just an incredibly powerless feeling.”

On top of all that worry is the crushing financial burden.

Another view Health reform critics talk back Many of the nearly 85 percent of Americans who have health insurance say the system works just fine. Several readers who responded to msnbc.com said they're leery of sweeping changes that could endanger their care. — “Why don't you ask about stories of where health companies have been outstanding at paying huge bills for the insured?” wrote John M. Chenhall, 63, of Athens, Ga. "I have had prostate cancer and paid only a $250 co-pay. My bill was in excess of $25,000." — “I don't have any dilemma,” wrote John B. Barfoot, 53, of Ingleside, Texas. “We've always paid for our own health insurance. Yes, it costs money, but it's money well spent in the long run. People need to be responsible for their own health care.” — “I have great medical care and don't want it to change,” wrote Anita Oliver, 70, of Fresno, Calif. “The plan being discussed now will ruin medical and also this country. Idiotic!”

“That’s the kicker,” she said. “You got the crappy end of the lottery and you got a medically fragile child and you’ll have to fight for his life. And now, we’re going to drain you financially, too.”

Health reform could ease the Elliott’s financial worries, if not the medical concerns, said Nichols, the health economist. The proposals under consideration mandating that virtually everyone purchase health insurance could boost the pool of potential payers and allow new limits on out-of-pocket costs.

For the Elliotts, such limits could be far lower than the $25,000 or more a year they now pay.

“You could afford that because you could get everybody in the pool,” Nichols said. “To make the pool reflect the whole population, it’ll be, on average, cheaper.”

Any change would be welcome, said Elliott, who supports a government-funded public health insurance option. 

“If my husband were to lose his job, we’d be broke in a week,” she said, adding later: “So few people understand they could be next.”

Lost job, lost insurance
In the spring, as unemployment rates in the Detroit region topped 22 percent, triple the national rate, 38-year-old Michele Thomas became one of the casualties of a spiraling economy. She was laid off from her job at a furniture store in April, four months after her husband, Kevin Thomas, 43, left his job as an apartment security worker after an intruder threatened him with a gun.

Kevin Thomas had health insurance through a $400-a-month private policy. Michele had good coverage through her work, but that ended when she lost her job. Living only on her unemployment payments of $774 every two weeks, she was still searching for an affordable policy in August, when the pain in her stomach started.

For several days, Thomas tried to ignore the symptoms, but when she started vomiting blood at 1 a.m., her husband insisted on taking her to an emergency room.

“I said, ‘Honey, I don’t have insurance. We can’t go to the ER,’” Thomas said.

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