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Insured but Not Really Protected

Tens of millions of Americans have coverage so skimpy a medical crisis could mean financial ruin.

“I was healthy,” says Jacque Eyler of Westminster, Md. “I thought we were in a good place—that if anything happened we would be OK.” And why shouldn’t she? Jacque, 57, and her husband, Jim, 58, worked hard, paid their bills on time and saved money. Solidly middle class, these high school sweethearts are the kind of people who lived comfortably, but not beyond their means, in a house in the small town where they grew up. Then a diagnosis of cancer changed the Eylers’ life in ways they never could have imagined, let alone planned for.

Now Jacque and Jim live month to month and are fighting to stay afloat financially—almost as hard as she has had to in fighting her cancer. “If you ever told me I’d be in this situation, I’d say, no way!” says Jacque.
Unfortunately, the Eylers’ story is profoundly common. Lost amid the rhetoric about health care reform is the fact that tens of millions of people in this country are underinsured, and they probably don’t realize it. They march through lives under the treacherously false notion that they’re covered. If they’re lucky—that is, healthy—they’ll never have to put the limits of their health insurance to the test.

In August 2005, Jacque, a private investigator with an agency, was devastated to learn she had an aggressive form of breast cancer known as HER2-positive. But she and Jim were comforted, knowing they had access to some of the best cancer specialists in the country at the Johns Hopkins Hospital, just 45 minutes away in Baltimore.

And they were confident that they could rely on their health insurance. Indeed, they’d opted for the best plan available through Jim’s employer, a cement manufacturer. The Eylers had no serious health issues, but they had agreed it would be worth the extra cost to be able to choose their own doctors if they faced a real medical problem. Under their policy, they’d have to pay 10 percent of the medical bill for that privilege. But when Jacque was diagnosed, that seemed like a bargain as they sought out the best experts to treat her complicated illness.

Soon, however, it became clear that even with their insurance, they wouldn’t be able to afford her care on Jim’s salary as a supervisor for the company. Their portion of the bill for the first year of treatment alone totaled nearly $20,000, roughly a quarter of what Jim earns.

No rest for the weary middle class

When Jacque learned she had a large cancerous tumor in her breast and that the cancer had spread to her lymph nodes, she tried to accept her new reality, including the high recurrence rate of HER2-positive breast cancer. She felt grateful for the attention she received at her regular chemotherapy appointments. But her troubling diagnosis and her expensive care were just the beginning of the challenges that lay ahead.

Over the course of four years, Jacque’s cancer and the side effects of her intensive treatments led to a minor stroke, a double mastectomy, a hysterectomy, congestive heart failure, lymphedema and neuropathy. And just when Jacque seemed to be coming out of the woods last year, Jim was diagnosed with bladder cancer. Although his case appears manageable, the added emotional and financial burden was another blow to the Eylers, already weary and broke from Jacque’s cancer.

“There comes a time when you have to say we need help,” says Jacque, who was a vibrant, active woman before chemo turned her hair white, sapped her vitality and played havoc with her memory.

The couple put aside their pride and contacted the American Cancer Society for guidance. It provided names of several organizations that help cover the costs of fighting cancer. But the Eylers soon learned they make too much money to qualify for financial assistance programs—yet not enough to pay all of their bills.

They depleted their $70,000 savings and, no longer able to pay off their credit card balances each month as they always had, they began to acquire new ones. Jim recognized the perils of that approach, though, and took out a second mortgage to pay off four of six cards. And then, with no other alternative in sight, he crossed a boundary he had hoped to avoid: He dipped into his 401(k) to pay the $2,000 a month of extra medical expenses his paycheck couldn’t cover.

“The middle-class people are the backbone of this country,” he says. “We are getting absolutely screwed.”

Jim won’t be retiring anytime soon, but at least the couple is still solvent. According to a study conducted by Harvard Law and Medical Schools and Ohio University, in 2007 an American family filed for bankruptcy in the aftermath of illness every 90 seconds; three quarters of them had insurance. In fact, medical bills are responsible for nearly two-thirds of all bankruptcies in the United States, with an average out-of-pocket medical cost of $17,943 per family.

Finding out you're underinsured

“One of the things that we’re pushing for in health care reform is some standardization and explanation of what’s in a health plan,” says Stephen Finan, senior director of policy for the American Cancer Society Cancer Action Network. Without such standards, experts say, it’s extremely difficult to evaluate health care plans and to foresee what kind of coverage they would offer in the face of a serious condition. As it is, people tend to find out the hard way—once they’re sick.

Cancer patients, for instance, may find they’re only covered for a fixed number of visits for treatments like chemotherapy or radiation. They may even reach their lifetime maximum and lose their benefits altogether. “There are limits buried in legal contracts and it’s not realistic to think subscribers are going to read them,” says Finan. Even if they did, he says, few people are familiar enough with the costs of major health issues to spot shortcomings in their plans.

The result is that, like the Eylers, an estimated 25 million adults in the United States are underinsured—which means they are at risk of spending 10 percent or more of their income on out-of-pocket medical expenses. When they are ill, many underinsured people are hit with expenses that force them to make choices they shouldn’t have to make—like skipping treatments or medications as the bills pile up.

After four years of vigilantly monitoring her health and seeking treatment for the many side effects of her therapy, Jacque has started to forgo or delay care because she and Jim just can’t afford it. In January, Jim’s company switched to a new plan—saddling them with 20 percent of treatment costs and fewer choices of physicians. Her previous plan paid for Jacque’s radiology care, an integral part of her treatment at Hopkins, but the radiology department is no longer part of her plan’s network. So, faced with the choice of going to a different facility unfamiliar with her case, she’s putting off her biannual PET scan—a crucial test to catch any recurrence of her type of breast cancer—until they figure out how to scrape together the $6,000 cost.

Looking toward the future

Jacque worries that if her cancer comes back, the couple won’t have the money to pay for a second round of extensive treatments. She worries that her new insurance company recently questioned her need for a drug that keeps her cancer in remission. And she worries, of course, about her hard-working husband’s health.

“It’s a vicious cycle,” she says. “Anyone who’s had cancer knows that stress is one of the worst things. But there’s nothing that could make me not stressed except to be able to pay our bills every month.”

While the Cancer Society recommends that patients try to determine what their health plans cover, the truth is there isn’t much they can do. The best advice to avoid the Eylers’ plight, incredibly, is to stay healthy. And yet, there are countless afflictions that push people into the Eylers’ precarious position.

Indeed, their story has been a cautionary tale for their friends.

“They look at us and it frightens them,” says Jacque. “Because it all changed in the blink of an eye.”

Sharon Kay is a freelance health and science writer, editor and producer based in New York.

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