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Medical debt and uncompensated care: Two sides of the same health care coin

Lawrence woman struggles with $350,000 in medical debt

By Phil Cauthon | November 22, 2010

Hospitals are reporting sharp increases in uncompensated care — that is, health care provided to people without insurance and who can’t pay.

And officials at many of the hospitals, particularly urban ones, say the people they’re seeing in emergency rooms seeking primary care look different than they did just a few years ago.

John Bluford, chief executive of Truman Medical Center in Kansas City, Mo., said the stereotype of uncompensated care patients being mostly homeless no longer applies.

A more accurate description, he said at a recent business forum on federal health reform, would be “A 30- or 35-year-old without health insurance who two months ago worked at Sprint. The profile is changing dramatically and quickly. It now includes that young person's entire family."

Bluford said Truman’s uncompensated care costs doubled in the last year, up to 10 percent from the typical 5 percent. Hospital officials around Kansas reported similar trends.

Bonnie Cherry, a 28-year-old Lawrence woman, certainly didn’t fit the uncompensated care stereotype when she was diagnosed with a brain tumor at age 18.

Now, 10 years later she has some $350,000 in medical debt.

Cherry said she had health insurance most of the past 10 years, but when she found she needed it most, she lost it.

“Sometimes I think I’d really like it if I had this much debt only because I just bought a fabulous wardrobe and went to Paris,” Cherry said, trying to make light of her financial situation. “But when you’re worried about being sick, the rest of this stuff, there’s just not enough left for it. When you’re planning the rest of your life, there’s not enough left to worry about money.”

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Dealing with the tumor

Entering her teens, Cherry had severe headaches which doctors attributed to stress, allergies and caffeine. After years of symptoms, she got an MRI her senior year in high school when, by chance, a neurologist at St. Jude Hospital in Memphis, Tenn., offered to do one while she was there visiting her father, who worked in facilities operations at the hospital.

The tumor he found was a large, six-year-old jugular schwannoma — a tumor growing around the nerves and jugular vein at the base of her cerebellum.

She was referred to a specialist at Barnes-Jewish Hospital in St. Louis who performed two procedures. The first was brain surgery to remove as much of the tumor as possible without risking damage, followed six months later by “gamma knife” radiation.

Cherry was then covered by her father’s health insurance and the total owed for the two procedures after her insurance co-payments was $15,000.

Every few months, Cherry went in for MRIs and CAT scans to monitor the remnants of the tumor.

“It was still growing but the doctors thought it was growing in the way that stars grow before they die,” she said.

On Valentine’s Day 2003, her father lost his job and she lost her health insurance. Suddenly, she had to reconsider everything in her immediate future.

“I realized I had to do something fast,” she said. “So I left school, I (looked for) jobs full-time in the hopes of getting full coverage. But even full coverage wouldn’t cover pre-existing conditions. No matter how much I paid, it wouldn’t cover what I’d been seen for.”

Eventually she found a job in Lawrence with health insurance that would cover everything. Even her brain tumor treatments.

“I had full coverage, I was so relieved — I was like ‘Yes! It’s going to cover pre-existing conditions.’ It was Blue Cross Blue Shield, it was going to cover everything that I needed. So I went in for a week’s worth of tests at Barnes,” in St. Louis.

“They found that the tumor was really aggressive,” she said. “It was attaching itself to my brain stem and getting near my spinal cord and they wanted to remove it as soon as possible,” Cherry said.

She scheduled her third brain surgery and came back to Lawrence only to learn she had lost her job.

She said her boss told her she was being let go because of her medical condition — the small business couldn’t afford to have her in its insurance pool.

“I was going to cost them a lot of money. I understand completely. They run a small business and I was going to raise their premiums. So he had to let me go. And that’s legal. It’s horrible but I respect that he at least told me that,” Cherry said.

After federal health reform fully kicks in in 2014, coverage can no longer be denied due to pre-existing conditions and insurers will be required to cover claims even if related to a pre-existing condition.

Cherry in her Lawrence apartment with her cat, Pavel.

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Dealing with the debt

Cherry went ahead with the surgery though she had no idea how to pay for it. What choice did she have?

“I was getting ready to have brain surgery and I still had my insurance card,” she said, “the actual plastic card…so I walked in, they said they needed a copy of my insurance card, I was like ‘Here, here’s my worthless card.’ She made a copy and then I walked in to the operating room and had surgery.”

That single operation added $300,000 to the hospital’s uncompensated care tabulations and stripped Cherry of her financial freedom, likely for the rest of her life.

For three years now, most of every paycheck she’s earned has been garnished. She can’t put money in a bank without it being garnished. She likely never will qualify for a credit card or any line of credit. She can’t do many little things that require a credit card such as rent a movie or send flowers online.

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Help for Kansans with Pre-Exisiting Conditions

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She now works for AmeriCorps VISTA, running an after-school program for disadvantaged pre-teens.

She said she loves the job, but a big part of why she took it is because it doesn’t pay a wage. Instead, it pays a $600 “living stipend” each month, which can’t be garnished. And it will give her money to go back to school.

Cherry has had to reconcile herself psychologically to her calamitous financial situation.

“It feels like you’re trying to trick somebody or hide all the time,” Cherry said. “But I’m not even sorry. When I got on food stamps, it was the biggest relief I’ve ever felt. Because that was money for food that would be there no matter what. No one could take it and that was my biggest worry, not being able to eat. If you can eat, and you have a house, that’s enough, that’s fine. That’s bottom line. If I have that, I’m fine.”

Only option

The third brain surgery seems to have eliminated the tumor — three years of scans have shown no evidence it is growing back.

But when she woke from the surgery, she had almost completely lost her voice. The right side of her tongue was paralyzed, she’d lost motor control in her right shoulder and her hearing was damaged.

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Medical Debt: Consequences and Policy Options

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“Because I didn’t have health insurance, I couldn’t get any physical therapy for those things. So I just sort of got around it,” she said.

She drank from straws, made a concerted effort to move her tongue frequently, and started ballet to work her shoulder.

“I just gradually re-taught myself to do those things,” she said. “What do you do, if that’s your only option?”

But she couldn’t rehabilitate her vocal cords on her own. One simply wasn’t moving at all. She could barely speak louder than a whisper.

Two years later, she got a call from a surgeon offering to fix her vocal cord at no cost.

“It’s not clear to me how it happened, but an assistant who was in the room at the brain surgery mentioned something about me to her boss and they contacted me about fixing my vocal cords,” Cherry said.

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Voices of the Underinsured

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Her hearing was still a problem though and it seemed to be getting worse. It began to interfere with the job she then had as administrative coordinator at the Lawrence Arts Center, a job that came with health insurance but didn’t cover her pre-existing condition.

She needed $5,400 to cover the hearing aids and her insurance wouldn’t pay for any of it. With half her paychecks being garnished, she couldn’t hope to raise that kind of money.

Last November she posted a message on Facebook asking her friends for ideas to raise the money. In a matter of weeks, the money was collected via online donations from friends and strangers.

The Lawrence newspaper wrote a story about the community support for Cherry, which prompted a local audiologist to donate the hearing aids.

The money that was raised for Cherry was instead used to help three others with similar situations.

“I’m grateful to have learned this thing about my community — my village will take care of me just because I can’t hear. That’s a really great good that I wouldn’t have known — nor would these other three people — had there not been this other bad thing,” she said referring to her brain tumor. “So how can you be upset? But I think you caught me on a good day. Tomorrow I might be like, ‘Oh God, it’s so crushing and how will I ever get out from underneath this tale of woe.’”

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