cover_story (2006-10)

"Basically. they expect me to sit here with no resources, and watch my parents die." — Anna Emert

"Welfare momma'—that's what they used to call me in Nashville, and that used to really make me mad. You don't know my children. You don't know my situation." — Lori Griffin

"I guess I've stayed out of it, but it's frustrating to see my mom frustrated. I just wish we could get something solved, because this is all she's been doing." — Misti Whitaker

"I've been treated like I'm a complete moron, like I'm a liar, like I'm destitute and taking advantage of the system because I had TennCare to begin with. That's just wrong. I'm none of those things." — Kim Elrod

"Safety net? TennCare was the safety net, and once they destroyed that there was nothing. The safety net was lies." — N. McLean

There’s little mystery surrounding what went wrong. By the end of its first year, more than 1.1 million Tennesseans were covered, but the program was ill equipped for TennCare’s rapid growth. Just out of the gate, the $3 billion program accrued a $99 million budget deficit. In years to follow, Managed Care Organizations (MCOs) and hospitals began reporting major financial problems. Class-action lawsuits resulted in court orders restricting the state’s ability to deny TennCare benefits to enrollees. Fraud and abuse aggravated the fiscal dysfunction. A report released in 2003 concluded that the program, if continued, would be consuming 90 percent of the state’s new revenue, with total cost reaching $12.2 billion, by the year 2008.

In November 2004, Gov. Phil Bredesen threatened to dissolve TennCare completely and return to Medicaid unless dramatic reforms were allowed to pass. Two months later, it was decided that 323,000 adults—nearly half the programs’ adult enrollment—would lose their coverage. 

Since then, over 191,000 TennCare enrollees have been terminated from the program. Many of them are either uninsurable on account of severe illness or unable to afford insurance elsewhere. Some disenrollees, especially those versed in TennCare rhetoric, have experienced varying degrees of success navigating the situation. Others feel confused, helpless and abandoned.

It is not this article’s intention to argue the finer points of healthcare, or to debate the extent to which American citizens are entitled to healthcare, or to point fingers, or to offer a solution. It wishes only to present the situation as it is perceived through the lens of those affected. These are their stories.  

PATRICK & BEATRICE Fifty-nine-year-old Patrick Williams calls it “genocide,” but he doesn’t really understand what’s going on. All he knows is that his wife Beatrice is terminally ill with lung cancer, that his grown daughter/full-time caretaker Anna Emert has taken to lashing out at him in frustration, and that the government doesn’t seem to care.

But the Williams are luckier than many. Through a court appeal, Beatrice was allowed to remain on TennCare until December of last year; the bulk of the 191,000 TennCare patients who lost coverage were dropped in August. And since then, her doctor has agreed to continue chemo treatments, even though she can’t pay for them. But through a tangle of oxygen tubes—Patrick is sick himself with emphysema—the bright side is hard to see.

Daughter Anna lives in Karns with her husband, two children and parents, all of whom she cooks and cares for while maintaining a part-time job as a web designer. On this gray morning in early March, her eyes sag with dark half-moons of exhaustion. After spending 10 minutes driving around downtown, looking for a place to park, even the coffee shop’s atmosphere of barely-perceptible piano music and steaming drinks does nothing to soothe her nerves. “There’s just a lot going on,” she explains, staring into her fast-cooling latté. A spongy muffin sits in front of her, untouched. “Who’s going first is what’s on my mind.”

The issue of mortality never strays far from her consciousness. Her husband, who has vascular disease, suffered a major heart attack in 2002, and her 15-year-old son is still recovering from a school bus accident last year that broke both his legs. Anna’s parents’ termination from TennCare, besides being a financial burden, causes her a great deal of emotional strain. According to a study by the U.S. Department of Health and Human Services, lack of health insurance is the sixth leading cause of death among adults age 25 to 64.

Anna admits to feeling guilt, even resentment, when she has to choose between funding her parents’ healthcare and her kids’. She says she’s so overwhelmed with anger and grief that it’s become hard for her to feel compassion anymore—toward the situation, even toward her sick parents. Her one outlet is a blog she’s created to share her situation with others. The entries are strewn with question marks and exclamation points, but most are appended by the designation, “0 COMMENTS,” confirming what she already suspected: either nobody’s listening, or nobody cares. 

“I finally got real hateful one day with my dad, and I didn’t mean to, but I couldn’t help it,” Anna recalls, tearfully. “We kept getting all this paperwork in the mail from TennCare, you know, your appeal has been denied—blah, blah, blah—and he said something like, ‘Don’t they know she’s dying?’”

She pauses to blot her eyes and sniffle angrily. “I told him, ‘OK, for the last time, yes, they know she’s dying. They don’t…give…a…shit .’”

CONNIE & KAREN Flipping through the newspaper personals, 58-year-old Karen Aguirre dissolves into girlish giggles. “Look Connie,” she says to the woman in a chartreuse blazer across the table. “This is what we need—a couple of rich husbands who’ll buy us health insurance.” Connie Regan’s halo of coifed hair quakes with laughter . Two tables down, the waitress flashes a bucktoothed smile and shakes her head. “Oh, honey,” she sighs. “Don’t we all.”

Somewhere in the restaurant, a child screams. The buffet line steams with Shoney’s home-style specialties—various meats submerged in viscous gravy; green beans tangled with fatty strips of bacon; cottony dinner rolls; quivering cubes of bright red gelatin. Outside the window, traffic is clogged on the parkway, a Sevierville artery flanked by firework superstores and knife outlets. Two potbellied rednecks stumble across the parking lot.

This is not where Karen and Connie thought their lives would end up. “We used to think people like us had one foot in the banana peel,” Karen says, referring to her present state: divorced, living in poverty, severely diabetic, grossly obese and uninsured. “We’d look at people like us, and in our own minds, we’d think of an excuse of why they’re like that. You don’t ever think that it’s going to happen to you.”

Karen opens a package of oyster crackers and shakes them into her soup. She never understood why people on welfare were fat, she explains, until she discovered that starchy, thigh-thickening foods like mac ’n’ cheese, if less nutritious, cost fewer food stamps than vegetables and fruits. That was only one of several harsh, post-divorce realizations. She never thought she’d have to have a job, or that she’d have debilitating medical problems. And she always figured government-subsidized healthcare was reserved for the dredges of society—not someone like herself.

Then, suddenly, she was a single mother of two with no income. Her ex-husband got the house. She got a job at The Incredible Christmas Place. It didn’t pay well but was the best she could do in an area where employment is limited to, as she puts it, “touristy stuff and little peon jobs.” It was also where she met her soon-to-be best friend Connie who, like Karen, was newly divorced at the time.

But the conditions of the job took their toll. Long hours on their feet, sometimes with no breaks, aggravated Connie’s bone spurs and Karen’s knees. The company also offered no insurance, so both women enrolled in TennCare since they couldn’t afford to purchase insurance elsewhere. Meanwhile, their health continued to decline, eventually forcing them to quit. “After so many years, your body starts breaking down. You just can’t take it,” Karen recalls.

Soon afterward, in August of last year, each received a letter informing them that they’d been disenrolled from TennCare. Connie sought employment at Wal-Mart, as the company offered insurance for a semi-affordable cost, but by then a series of health issues—diabetes and an associated nervous system disease that affects her legs, feet and bladder—made work “a living hell,” she says.

Both women, with their chronic health problems, were deemed ineligible for coverage by private agencies. For Karen, Blue Cross Blue Shield was an exception, but its quoted $1,133.33 per-month premium was unfeasible; even at the height of her employment, she was making only $800 a month. They did, however, still qualify for a so-called Safety Net program for disenrollees, which provides certain medications, mostly generic drugs and insulin, for low costs. It helps foot the bill for their myriad prescriptions, ranging from blood pressure and potassium pills to antidepressants—although the limited list of available drugs prevents them access to some that they need.

They’re worried, however, about what they’re going to do when the program ends in June. Karen now lives on her 23-year-old daughter’s motel-clerk income, and Connie gets by working as a caretaker for the elderly. “I don’t blame anybody for the way my life turned out, because we each make our own beds,” Connie says. “But it’s stressful, thinking you’re a paycheck or two away from the street, and what if you get sick and you can’t get out to work and there’s no one there to care for you.”

She stabs a fork into her meatloaf, while Karen absentmindedly chases an oily slice of cabbage around her soup. Country music reverberates through the sound system, accompanied by honks from the traffic creeping past outside. After a while, Karen looks up and pushes the bowl away. “We talk about it all the time—what we’re going to do, what’s the answer. Where are we going to be in five years?”

THE GRIFFINS It’s hard not to stare out the window as Lori Griffin describes, in graphic detail, the health problems that plague her family. Beyond the train tracks, the green Hamblen County landscape sweeps upward to a tree-lined crest, laced with fences and dotted with cows. It’s an unusually warm day for the beginning of March, and the sky’s a paisley canvas of periwinkle and white. It’s a pastoral scene in comparison with the grisly slideshow Lori expels: the blisters covering her terminally-ill husband’s lungs, the massive tumors in her children’s stomachs, the way her esophagus burns after she vomits up stomach bile and blood.

“There’s always something going on at our house—a stroke, a blow-up from the bi-polar…always something,” she explains. Lori herself has thyroid cancer, and conditions ranging from diabetes to lupus to cystic fibrosis affect the rest of the household. She openly admits that she shouldn’t have had kids, and recently withdrew her 11-year-old son, who’s on a waiting list for heart surgery, and her 15-year-old daughter, whose ulcers will be patched as soon as they stop bleeding, from school. The frequent occurrence of bomb threats—three in each of their schools over the past three weeks—send the children, both bi-polar, into manic breakdowns.

Of the false alarms’ perpetrators, Lori has some theories. “We’ve got a lot of crazy people here in this county, and I don’t know that it’s not people being taken off their drugs. Now that they’re cut off, they’re doing desperate things,” she says, referring to the 8,357 Hamblen County residents who have been or will be disenrolled from TennCare. Daughter LeeAnn quips, “We used to go to the pharmacy and you’d have to wait in line for, like, two hours for one prescription. Now you go in and you’re out of there in 10 minutes.”

Lori’s TennCare was terminated last August, though her children are still enrolled (children under the age of 21, pregnant women, women with breast or cervical cancer, and single parents of minor children were allowed to remain on the program). The four of them live off the father’s disability check, about $1,200 a month. Lori manages her pain by taking her children’s nexium when they miss a dose and one of her husband’s prilosec pills each day. She blames her children’s mental instability on the emotional strain of witnessing her own fast-deteriorating health, then takes it back: “No, I blame the governor.”

Lori refuses to call Bredesen by his name. Through her involvement with the Tennessee Justice Center, she’s met him in person four or five times to plead for TennCare’s continuation, mostly in Nashville, where, “they basically called me a welfare momma and told me I could just go ahead and die so I’ll be off the rolls.” Last June, the organization took she and LeeAnn to Washington, D.C., to confront Bredesen at the National Press Club. “I went to the governor and he said, yeah, you need TennCare, but then he didn’t help me keep it.”

Now, Lori says she doesn’t believe anything she’s told. The offices in Nashville won’t call her back, and the Hamblen County health department won’t see her or her family because they’re chronically ill. “There is no safety net. I see people fall through every day. I’ve fallen through big-time. I’ve fallen through every crack there is,” she says.

Despite their frustrations, Lori and LeeAnn are eager to pose for a picture. They grin broadly, and from a distance their crooked brown teeth look white, almost straight. A gentle breeze flutters the daughter’s t-shirt and lifts tufts of her mother’s thinning hair. “Maybe the governor’ll see us in the paper,” Lori says pleasantly. “He’ll see that we’re not dead.”

MISTI “I don’t like to talk about it,” Misti Whitaker says in a strangled voice, averting her mother’s gaze. Outwardly, though, nothing seems askew with the 24-year-old’s health. She’s ballerina-slender, with shiny brown hair and a flawless complexion. A charcoal-pencil portrait on the wall, sketched by a street artist in France, plays up her eyes. A framed photograph in the corner shows her swimming with dolphins in Florida.

These days, life isn’t so carefree—as her aunt and mother are quick to remind her. After graduating from Carson-Newman in 2004 and taking a sales job in Knoxville, a combination of lupus and kidney disease forced her to return to Bristol to live with her parents. Despite its white-columned façade and dollhouse-perfect décor, the home gives the impression of a bell jar, glassing Misti in, shielding her from a world of germs and stress. “She lives a limited life, but it’s not an unhappy life, and she’s always very positive, pleasant,” explains her aunt, Mary Kay Dishner. “But it’s not a normal life. I mean, would you want to be sitting in your parents’ house, eating salad and having to get your rest and exercise, when most of your friends have moved from the area?”

Misti’s mother Margaret adds that her daughter’s kidneys are only functioning at 10 percent capacity, and that scarred kidneys don’t rejuvenate themselves like other organs. Misti’s not going to get better—not until she gets a transplant from either her brother or father, both of whom share her blood type. But since Misti was disenrolled from TennCare at the end of January, that procedure doesn’t appear likely to happen anytime in the near future. And since she’s a renal patient—as other chronically ill enrollees have discovered—no insurance company will touch her.

For the past month, Margaret has worked tirelessly, she says, to unearth a solution. She’s called 30 insurance companies and numerous healthcare agencies, and written letters to 132 legislators and several media outlets. Each of the insurance companies reiterated that there was nothing they could do, but she did receive an information-request form from Sen. Bill Frist’s office. It could just be more paperwork, but it gives them hope.

“If Misti didn’t have me to do this, she’s not physically able to do it,” Margaret says. “Even if she could, it would send her blood pressure over the top and probably put her back in the hospital. It’s about made me crazy, so I can’t imagine what it would do to her.”

The aunt unsuccessfully presses Misti to elaborate on her condition.

“You do live a very limited life, isn’t that true?” she asks. Misti stares at her feet and crosses her arms. “I guess.”

“You haven’t taken any trips to Europe; you haven’t gone out of town except [to the doctor in] Knoxville; we did go to California and it about did you in,” Mary Kay says, reminding her of a recent trip to visit her brother in L.A. “She swelled and got tired. Pretty much stuck to her diet out there, but got a cold, an ear infection.” Mary Kay turns to Misti. “True?”

“Yes!” Misti squeaks in exasperation, looking up at her aunt with glassy eyes.

Margaret, seated on a chair by the window, re-crosses her legs. “See? She doesn’t like to talk about it. I apologize.”

KIM Kim Elrod is no stranger to needles. She’s the owner of Knoxville’s first tattoo parlor, a tooth ’n’ nail establishment tucked into a Clinton Highway business row. For the past 17 years, she’s worked at least eight hours a day, six days a week, to make Guns & Needles into the bustling small business it is today. So it angers her when people assume that, because she was on TennCare, she was taking advantage of the system. “I am not a charity case,” she says with clinical matter-of-factness. “I am not a deadbeat. I don’t want anything handed to me, because if something’s handed to you, it can be taken away just as easily.”

She knows from experience. Kim, who suffers from several chronic illnesses including coronary artery disease, type-II diabetes and Epstein-Barr syndrome, was disenrolled from TennCare last August. She didn’t even want to be on it in the first place, she says, but had no alternative. With her history of heart attacks and cancer, and being a smoker, the least expensive insurance she could purchase would’ve cost her $2,700 a month, not inclusive of drugs. “Who can pay that? I mean, good lord, that’s all my monthly expenses and then some added together,” she says.

But Kim is the exception to the rule. Over the years, she’d accumulated some savings—enough, at least, to afford her $500-a-month medications for a couple months after she was cut. And, after Kim’s doctor heard about her situation, he called her up and insisted that she be his patient for free. She also commends his office staff for helping her sort through the paperwork and procuring low-cost drugs for her from the manufacturer. And a church friend’s husband, who’s a surgeon, has offered to help her out should she ever need surgery.

“I know I’m not the norm, and I completely give credit where credit is due,” she says. “My present doctor/medication situation is not because the safety net works, it’s because God put people in my life to help me.”

A number of American flags, large and small, are strung throughout the parlor. On one hand, the décor seems ironic; on the other, wholly sensible. “As a society, we have to change our focus,” Kim says. “We cannot put our faith in the government. We can’t completely depend on our government to take care of us, because look around—it doesn’t happen.”

N. MCLEAN A man with a snowy mustache and tweed sports coat is hunched over the conference table, beneath one of those motivational posters combining the word “success” with a picture of a sailboat. N. McLean has been working as a realtor out of this West Knoxville office since 1976. He’s paid a lot of taxes, he explains, and he’s always provided for his family—a wife, five sons and three daughters. So he doesn’t understand why the government is letting him die.

McLean suffers from emphysema, deteriorating disk disease and Parkinson’s, but he figures it’ll be another stroke or heart attack that does him in for good. Probably sooner than later—he gives himself another year or two, if he’s lucky.

He’s been off all his medications with the exception of painkillers, for his back, since he was dropped from TennCare last August. He pays for the painkillers himself. “I can’t go off them,” he explains. “I was raised in a religious home and the principles of our religion are against committing suicide, but if you knew the pain level you get to with this, you wouldn’t want to live.”

No private insurance company will cover him, but McLean doesn’t blame them. “I need a full-body transplant,” he laughs. He can’t work as much as he used to; he says the illness makes him scatterbrained, like he’s not getting enough oxygen to his brain. Some days the pain’s so bad he can’t drive his car. Every few moments during today’s conversation he pauses, with eyes closed and head bowed, as if to regroup. His trembling worsens when he talks about Bredesen, whom he predicts will begin re-enrolling some terminated TennCare patients during the upcoming election year to make himself “look like a hero.”

Whatever Bredesen’s intentions, the state is presently pursuing several cost-containment strategies, including requiring MCOs to assume more financial risk, bolstering efforts to crack down on TennCare abuse, and loosening the consent decrees that were placed on the program by public-interest lawyers during the ’90s. Bredesen claims the latter could result in the reenrollment of up to 100,000 terminated TennCare patients.

Others, including McLean, aren’t convinced. TennCare advocacy groups such as Tennessee Healthcare Campaign and the Tennessee Justice Center are proponents of another bill that’s presently on the table. Titled TREAT (TennCare Reform, Ethics, Accountability and Transparency), the bill includes legislation that re-opens enrollment for the medically eligible or uninsurable and lifts hard limits on prescription coverage. Moreover, it’s designed to work with the current revenue stream without requiring new taxes.

McLean is of the mind that anything would be better than the situation facing the state today, especially with Bredesen at the helm. “I’m surprised the FBI hasn’t come after him,” he says, after a long silence. “He’s trying to kill half the people in Tennessee. He’s basically sentenced me to death, and I didn’t do anything.”