Personal Health

The Missing Class: Portraits of the Near Poor in America

Hospital patients in low income communities often receive second-rate care -- even when they are insured.
The following is an excerpt from Chapter 5 of The Missing Class: Portraits of the Near Poor in America.

While the uninsured are most at risk, researchers estimate that about a fifth of insured individuals are underinsured and face limits on coverage or substantial financial costs if faced with an illness. -- Kaiser Commission on Medicaid and the Uninsured, 2002

THE HALL FAMILY

Gloria Hall is angry. She is angry at the board of her co-op, who refused to get her a parking space in the building even though her car mirrors have been smashed twice and there are plenty of unused spaces in the lot. Gloria will even get up and agitate about it at the co-op meetings, so much so that her neighbors routinely boo her off the floor.

She's upset at her bank, which charged her huge fees for bounced checks and never told her about them, until she noticed her savings account was a few hundred dollars short. In a fit of fury she closed her account -- and then found herself struggling to open a new one, having lost the citizenship papers a new account required.

Come to think of it, Gloria is angry at America. She came here as a teenager from Panama, just one more descendant of slaves hoping for an opportunity up north, but soon enough she had her fill of the word "nigger," the rude stares, and the constant harping about how people from other countries were lazy and degenerate and uncultured -- when she knew for a fact that wealthy, powerful America couldn't even care for its own.

She is truly furious with her ex-husband, the father of her three children. When she first met him he was a responsible black man, a supervisor at the factory where she worked, who eventually got hired by a construction company. But after the two were married, Samuel went "off the deep end." He started drinking; he drank so much that he would collapse and get robbed as he stumbled back home. He got hooked on drugs and began hanging out in crack houses.

Samuel went to live with his sister in Jersey and supposedly cleaned up his act, but when he came back to Brooklyn nothing had changed. He became a deadbeat dad, too busy drinking to attend when Mallory, their eldest son, graduated from junior high. Samuel barely noticed when Mallory went off to a boarding school in Massachusetts at the age of thirteen, and he seemed too busy to care when Mallory graduated and joined the army.

Gloria divorced him. Wounded by this turn of events, Samuel found his way into a treatment program, recovered fully, and -- wonder of wonders -- found a well-paying, white-collar job. Gloria's wrath did not die; he was still a good-for-nothing man who had time for a girlfriend and Saturday overtime at the firm but couldn't manage to pick up the two younger kids for the weekend -- his court-mandated weekend -- and couldn't be bothered to pay his full share of child support. Yet he had the nerve to tell their sons that Gloria was greedy for asking.

She is fed up, too, with those sons of hers, thirteen-year-old Stephen and nine-year-old Terrell, who expect the world of her -- to play catch even though she's sick, to take them to the movies even though she's tired, to pay for a school trip to Spain even though she can barely save a dollar, to make them into men even though she doesn't know how -- and yet expect nothing from their father. Is she the only one who notices? He's the one who shuts them up in their rooms with Game Boys while he goes off to his weekend shift at work. He was the one who kept promising to take Terrell fishing but never did. He was the one who said he'd accompany Stephen to a play but decided at the last minute he wasn't "properly dressed" and bailed. She is angry that they are not angry.

And then eighteen-year-old Mallory goes off to the military and signs an insurance policy that will give the money 50-50 to his father and mother -- 50-50! -- when she was the one who raised him, was there for him when his own dad was off giving a bad name to fatherhood everywhere.

But what makes Gloria angriest of all -- what sinks her into long bouts of depression and suicidal thinking, pushes her onto the very edge of her sanity -- is that she is dying.

She has been diagnosed with thymoma, a rare cancer of the thymus. It started in that small vestigial gland behind her breastbone, then spread to her bloodstream, and then into her diaphragm, requiring the removal of part of her lungs. Gloria went through chemotherapy. The cancer went into remission -- only to come back several years later. A few years ago, things reached a point where she felt the need to approach her ex-husband about her health. She needed to make sure he would take care of Terrell and Stephen if she died. Her expectations of

Samuel were so low that she wanted him to either commit himself to the arrangement or relinquish his rights as a father so that her own family could take custody when the time came.

After hesitating, Samuel told her he'd take care of the boys. Gloria was not convinced.

Perhaps fate wouldn't seem so spiteful, or her life so awry, if it had not been so good before. Once, she was a unionized city employee. She wasn't rich, but she was far from poor. Her days of pressing and labeling pants on a factory assembly line seemed to be behind her. In fact, when they were married, Samuel wasn't so sure he liked having a wife who made more money than he did. It was one of the reasons for their breakup. In spite of Samuel's objections, Gloria insisted on making her own living. "I don't like to depend on people to take care of me," she says.

So it upsets her to think of how little freedom she has left. Now she must make do on a fixed income from SSI and her ex-husband's alimony. The total comes to about $1,200 a month. Her body, meanwhile, is breaking down. Gloria was always on the heavy side, but now she can barely walk. Her dusky skin is puffy, her rounded face drawn; her eyes register the ache in her body as she moves, carefully, as if measuring each step. Walking two blocks down the street leaves her gasping for breath. Her older sister, Amelia, who is retired and suffers from breast cancer, once had to accompany Gloria to the supermarket. Amelia left her there to shop, but then came back because she feared Gloria wouldn't be able to make it home. "And I was in the same spot where she left me," Gloria says. "So she just took the bags. And I said, 'Oh, man, I can't believe this is happening to me.' ... I should be the one that's helping her."

At night Gloria cloisters herself in her room and puts on some gospel music. Her stern mask falls away, and her eyes, habitually slit with pain, relax. Gospel does that. "Why you playing the same song over and over?" her son Stephen asks, exasperated. Gloria just ignores him. She feels good when the music is playing. She feels like herself again. She remembers how much she loves her children, how much she wants to be there for them in the years to come.

The frustration dissipates. But following behind, always, is regret. If she does not have that fury to propel her forward, onward, then her memories pull her back -- to bad decisions, to failed relationships, to lost friends. The children -- where did she go wrong with them? Why are they so unruly and argumentative? "Was it my fault?" she asks herself. "Did I do this right? Did I do that right? Could I have done it better?"

But it's no use. "Sometimes I just think that no matter what I do, it's not enough. It's just not enough."

Much attention has been paid -- justifiably so -- to the plight of uninsured Americans, who numbered more than forty-six million in 2006, a disproportionate number of them poor or near poor. Recent studies have also examined the predicament of working families saddled with responsibilities for caring for sick children and elderly parents. But what happens when the working caregiver becomes the sick patient? The story of Gloria Hall is the story of many Missing Class Americans who find their lives, in public health expert Jody Heymann's apt phrase, "predictably unpredictable." They may be fortunate enough to have health insurance and decent-paying jobs, but once illness strikes their households, uncertainty and anxiety set in. There is, in the forefront, the frightening prospect of impending death or physical disability. But there is also the psychological trauma of greatly diminished abilities and the fear of no longer being able to provide for loved ones -- fear that can express itself in depression, anger, or both, as Gloria Hall has discovered.

Gloria had health insurance from her job as an officer in the city's health department police, where she worked the night shift out of one of their Brooklyn facilities. The job was a good one -- public sector, with plenty of benefits and a decent pension if she stayed long enough.

With that reliable paycheck, Gloria rose beyond her family's humble beginnings in Panama and said a final good-bye to her days as a low-wage worker in New York. But the job's health coverage, she soon learned, was less than adequate. For one thing, her cancer remained undetected for years because her doctors didn't listen to her and her HMO refused at first to pay for a test.

Gloria had started complaining to her doctor in 1989. "I feel like something is growing in my chest," she told him. One X-ray showed an abnormality. "Maybe you didn't hold your breath," the hospital staff told her. This state of affairs went on, with Gloria insisting there was something wrong and the physicians doubting her. Finally, a physician's assistant told her, "Either you're crazy or something is really physically [wrong with you]. I'm going to set you up for this test." The results of the CAT scan did not look good. Gloria needed an MRI, they said. Yet Gloria's insurer wouldn't pay for it.

Finally, after some wrangling, the MRI was done, and in 1993 Gloria was diagnosed with thymoma. Chemotherapy treatments sent the cancer into remission but damaged her heart.

The next round of problems cropped up when Gloria's doctor told her that her chances would improve if she could see doctors who specialized in this unusual form of cancer and recommended she visit Memorial Sloan-Kettering Cancer Center, a world-class cancer treatment and research center in Manhattan. Her HMO refused to pay for it. "The only time they approve [it] is like when somebody's dying already," Gloria says. "When it's too late, that's when they'll approve." Gloria dropped her HMO and got on Medicaid, the government's health insurance for the poor. Sloan-Kettering accepted Medicaid.

Like many working Americans faced with life-altering illnesses, Gloria was learning the limits of the nation's health-care system. Yes, she was insured, but only weakly so. Unlike many Americans, Gloria was a member of a union. Even so, she lacked the generous health benefits enjoyed by the nation's wealthier workers, who can command such largesse. Her health insurance didn't want to pay for expensive diagnostic tests. It didn't want to pay for a state-of-the-art treatment center. Fortunately for Gloria, she was quickly descending into the ranks of the poor and publicly insured. Once she was too sick to work, she began to live on monthly SSI payments of $768 and child support of $500. The low income meant that Gloria now qualified for Medicaid.

After her cancer was diagnosed, Gloria became a regular visitor to the Brooklyn Hospital Center, what she calls her "home away from home," a nonprofit teaching hospital a short distance from her apartment in Fort Greene. She liked her doctor, an Indian man who was a pulmonary specialist. When the doctor learned Gloria didn't have a prescription drug plan, he handed her several dozen samples of heart medication -- a costly drug -- so she wouldn't go without it. Gloria's other interactions at the hospital, however, left a lot to be desired. Emergency-room doctors had no bedside manners. (It didn't help that many of them had never heard of thymoma, a rare cancer seen mainly in populations from tropical areas; one doctor confessed she didn't even know how to spell it.) The nurses, with some exceptions, tried her patience. It pained Gloria to hear elderly patients crying out in pain, only to be ignored. "Unbelievable," Gloria says. "My sister went there once, and she called and called. Nobody paid any attention. She had to [urinate] on herself." Meanwhile, the hospital technicians, many of them Russian immigrants, were hurried and brusque. Do they dislike black people? she wondered.

What Gloria encountered at Brooklyn Hospital Center will fail to shock anyone familiar with the grim frontlines of America's health-care system, where chronically understaffed hospitals struggle to serve low income communities. Patients often receive halfhearted bedside attention from physicians and other hospital staff, even when they are -- like Gloria -- insured. The treatment they are given telegraphs a message: You think you deserve better? Guess what? You don't. True, the care at Brooklyn Hospital Center was better than nothing -- it sure beat waiting in the emergency room for hours for someone to treat her -- but sometimes, after hours of being shuttled from one surly hospital worker to another, Gloria felt like she was being treated in a destitute Latin American country again, rather than in the world's richest nation.

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