Case Study: The Uninsured True Stories of Unnecessary Sickness, Death and Humiliation

by Howard Bell Printed in The New Physician magazine September 2000 issue The Uninsured: Myths & Facts

One in six Americans does not have health insurance, and many live sicker and die younger because of it. The ones Dr. Debra Richter thinks of are dead-like George and his sister, Tina. Richter took care of them at an inner-city health center in Buffalo, New York. Diabetics since childhood, their disease went untreated because the family rarely had health insurance. When they were teenagers, Tina waitressed and George worked in factories. None of their employers offered them health insurance. They earned too much money to qualify for Medicaid, and they couldn't afford to buy private insurance, so they went without insulin, syringes and glucometer sticks.
          "I'd talk drug companies into giving us free bottles of insulin," Richter says, "but you just don't keep free samples of insulin lying around. Syringes were fairly easy to scrounge, but at 50 cents each, glucometer sticks were difficult to get."
          With blood sugar levels averaging 200, George went blind at age 20. Unable to see or work, depressed and housebound, his disability finally qualified him for Medicaid-too late. He died at age 21 of multiple organ failure due to uncontrolled diabetes.
          Tina's first and only baby lived for five months and never left the hospital. Cause of death: complications from gestational diabetes. A year later, Tina had a myocardial infarction. Despite a bypass, she died at age 25. "It was heartbreaking," Richter says. "George and Tina had a strong work ethic. I had to face their mother at the funerals knowing if they had gotten good care for diabetes, we could have prevented all their end organ disease. George would not have gone blind. The baby would have lived. Neither would have had heart or kidney problems."
          "I see stories like these every day," Richter says, "but the public never hears them because they're anecdotal. The cause of death says kidney failure, but they really died from lack of insurance."
          In the wealthiest nation on earth, one of every six people delays care or avoids care and rations their medicine because they don't have insurance to pay for it. Richter now practices in rural, northern Vermont, but she says the stories are the same there. "It's no different-rural or urban, minority or white-life without health insurance devastates emotionally, physically and financially."
          The United States spends more per capita on health care than any other nation, yet in fairness and access for all, we rank 54th, along with the island of Fiji, according to "The World Health Report 2000," a World Health Organization analysis of 191 health systems.
          Forty-five million Americans have no health insurance. The number grows by 100,000 each month, according to a Health Insurance Association of America (HIAA) study. Despite a booming economy from 1994 to 1998, the number of uninsured rose by 4.5 million people. HIAA predicts that if nothing changes, 55 million will be uninsured by 2008, more than one in five Americans. Behind all the statistics and endless debate about what to do about it, real people suffer. Who they are may surprise you.

Working Poor
At Terry Reilly Health Service in rural, southwestern Idaho, family physician Dr. Bob LeBow offers reduced-fee care to his uninsured patients, like the 28-year-old mother of two small children who worked at a convenience store and came to him with bacterial endocarditis. "She delayed getting care because she didn't have any insurance to pay for it, and she earned too much to qualify for Medicaid," LeBow says. She would have done fine if she'd come in earlier, he says. Instead, an embolus from her heart went to her brain and killed her. "She died because she postponed care, because she didn't have insurance. Ironically, she had just been promoted to assistant manager, which qualified her for insurance."
          The uninsured are not necessarily misfits who sleep in appliance boxes. Seventy-five percent of them have full-time jobs or live in a family where at least one person works full time, according to the May 2000 Kaiser Commission Report, "Uninsured in America." More than half are Caucasian. The uninsured are mothers who work at convenience stores and fathers who work in factories. They're the working poor who earn less than $10 an hour from employers who don't or can't afford to offer health insurance. Twenty percent live in families where two people work full time. Most of the uninsured work at medium to large businesses with more than 25 employees and have incomes higher than the federal poverty level.
          "What people need to realize is that the uninsured are us," LeBow says. "They are people who live next door to you, who work, who try to make ends meet."
          LeBow recently treated a college professor between jobs who had a bad cervical disc that needed surgery, which he postponed for several months until he had hand numbness and permanent nerve damage. "He eventually had surgery," LeBow says. "He's now filing for bankruptcy and feels humiliated."
          One in five adults say they or their family faced collection agencies because they owed money for medical bills in 1998, according to the "Commonwealth Fund National Survey of Workers' Health Insurance." For working-age adults earning less than $20,000 per year, the number was one in three; one in four for those earning $20,000 to $30,000 per year.
          Sixty percent of Americans have employer-sponsored health insurance, but Dr. Rudy Mueller, an internist in Jamestown, New York, chuckles cynically when he describes the games employers play to avoid having to insure workers. "One of our local employers considers working 35 hours a week to be part time," he says. "So a patient of mine who works there and needed an X-ray couldn't pay for it. Another of our local employers considers 30 hours a week full time, so they hire people to work 29 hours so they don't have to insure them. Each company makes up its own rules."
          Living without health insurance is so common in this country, doctors in all practice settings deal with it. "I'm in private practice," Mueller says, "so I'm insulated. Yet it's incredible what walks through my door. It's bad out there." Mueller is collecting stories about his uninsured patients for a book he's writing called As Sick As It Gets.
          Life without insurance whittles you down-literally in the case of a carpenter Mueller treated. Self-employed full time, he couldn't afford insurance. When he came into the hospital with bloody urine and uncontrolled blood sugar, they found a tumor. He refused surgery because he couldn't pay for it.
          Six months later, he accidentally cut off his thumb. The cancer was worse now and, because of his thumb, he couldn't work. He agreed to the cancer surgery, which was now more extensive and expensive. Unable to pay the bill, he received regular calls from a collection agency. His untreated diabetes caused a foot infection, so his toes had to be amputated, which added another bill to the stack.
          Sometimes he'd get free medicine for his diabetes. Sometimes he'd take it. Other times he'd ration it. His vision worsened. One kidney failed and was removed. They discovered another cancer-this one in his bladder. Then he was forced to say "goodbye" to his bladder.
          A few months later, his family found him lying on his floor from a stroke-a complication of uncontrolled diabetes. Nearly blind and stroke-disabled, missing several toes, a thumb, one kidney, his bladder and his home, he now qualified for Medicaid. His other kidney began to fail, so he was put on dialysis. He shared a nursing-home room with four other men when he died six months shy of being eligible for Medicare.
          "These stories have to be told," Mueller says. "The people making $8 to $10 per hour are hurting the most, but this is a problem that touches just about every family. Wake up, America."

I Am Woman. I Am-Uninsured.
Young to middle-aged women are losing their health insurance, according to the Commonwealth Fund's study "Health Care Access and Coverage for Women." Women ages 25-34 are least likely to have insurance. Though many low-income women with children still qualify for Medicaid, many no longer do because of recent welfare reforms. Health coverage for women with household incomes of less than $15,000 per year dropped from 44 percent to 37 percent between 1993 and 1998. The number of uninsured women across all incomes rose from 14 percent to 18 percent, while private insurance coverage for women dropped from 77 percent to 72 percent during the same time period.
          Although the Kaiser report shows that men are more likely to be uninsured than women, it's women who seem to suffer most from lack of insurance, according to several doctors. Mueller treated a middle-aged woman who quit her job to stay home and take care of her ailing father. "She lost her insurance because she quit work," he says. "Because she couldn't pay for her care, she delayed care, presented with advanced cervical cancer and died three days later."
          "Some of the worst cases you see," Richter says, "are working women in their 50s with chronic diseases who can't get insurance."
          According to the Kaiser report, older middle-aged women are among the fastest growing group of uninsured. Too young to qualify for Medicare, more than half have full-time jobs or have someone in the family who has a full-time job, but the employer doesn't offer benefits.
          Seventeen percent of women aged 60 to 64 live without health insurance. They also have more trouble finding affordable coverage because of pre-existing conditions-like the uninsured fast-food worker LeBow treated who had diabetes and couldn't afford to manage it. "She couldn't get insurance on her own because she had a pre-existing condition. The ones who really need it are the ones they won't give it to. I see it all the time. The system skims off the healthy and leaves the poor and sick to fend for themselves," LeBow says.
          Then there was the 64-year-old woman with an ulcerated prolapsed uterus who came to see LeBow. "Her uterus was hanging from her vagina, yet she decided to postpone the surgery for a year until she qualified for Medicare," he says.
          Another 64-year-old woman with cancerous vaginal bleeding, no savings and who was ineligible for Medicaid needed $10,000 for surgery. "Everyone turned her down," LeBow says, "so she decided she'd have to wait eight months, until she turned 65 and qualified for Medicare." After much finagling, Idaho's Canyon County loaned her money, and she was able to have the surgery done.

From Welfare to Work-and No Insurance
When it comes to getting health insurance, many low-income men and women are better off not working. According to a study conducted by Families USA, nearly 1 million low-income parents have lost Medicaid coverage, and most have become uninsured, since Congress and many states overhauled the nation's welfare programs in 1996. The number of low-income parents enrolled in Medicaid in 15 of the most populous states dropped 27 percent between January 1996 and December 2000.
          "Our study shows that hundreds of thousands of low-wage working parents were cast adrift without health insurance when they did the right thing and found jobs," says Ronald Pollack, Families USA's executive director.
          At the same time Medicaid enrollment decreased, the number of workers getting insurance through their employer did increase, according to the Kaiser report. But, those gains were not enough to offset the declines in Medicaid enrollment.
          By law, anyone leaving welfare is entitled to Medicaid for six months to a year thereafter, but states have not always complied. And most states place strict limits on how much a parent can earn and still qualify for Medicaid. In 32 states, parents who work full time at the minimum wage of $5.15 an hour earn too much to qualify for Medicaid.
          The main cause behind this crisis for these individuals is simple to understand-most people moving from welfare to work take low-paying jobs that do not offer health benefits. They are far more likely to have problems getting health care than those who have continuous Medicaid coverage. And even if they are offered benefits, they often can't afford the premiums, let alone the cost of an individually purchased policy. A typical monthly premium of $80 ($2,160 per year) for family coverage means a $25,000-income earning family would spend more than 8 percent of their income on health insurance.
          One hundred dollars in salary was the difference between having insurance and not having it for a woman in her 50s that Mueller treated for diabetes and hypertension. "She worked part time in a nursing home and didn't have insurance," Mueller says. "But she earned $100 too much to qualify for Medicaid. She'd borrow her sister's insulin and [had] lost so much vision [that] she'd watch TV through a plastic pair of children's binoculars."

Remember the Children
When parents lose insurance, so do their children. Hundreds of thousands of children lost Medicaid when their parents lost welfare benefits during the last half of the 1990s, the Families USA study reports. Despite the decline in Medicaid coverage for low-income children, conditions for them have improved somewhat during the 1990s, according to the Kid Count Survey, sponsored by the Annie E. Casey Foundation. Infant mortality, child death rates and pre-term birth rates are all down.
          The Kaiser report says that problems with access to care are less common for children than for adults. The number of children covered by employee-sponsored insurance grew somewhat during the last half of the 1990s, thanks to a strong economy. However, as with adults, this increase was not great enough to offset declines in Medicaid enrollment, resulting in a net increase in the number and percent of uninsured children. And according to the Kaiser report, an uninsured injured child is 30 percent less likely to receive treatment.
          Richter recalls a young boy who had a heart defect that made him vulnerable to infections. His mother, a janitor, couldn't afford to take him to the dentist when he developed a tooth infection. By the time his pain grew intolerable, his heart was infected with bacteria from the mouth infection. Spiking fevers, fatigue and chest pain developed a few weeks later. He arrived at the ER with subacute bacterial endocarditis, which required six weeks of preventable hospitalization. Damage to the boy's heart was irreversible.
          Medicaid still covers one in five children-but only half of all poor children and a quarter of all "near-poor." The 1997 Children's Health Insurance Program (CHIP) covers uninsured children in families above Medicaid eligibility levels but cuts off for those in families earning more than 200 percent of the federal poverty level. Unfortunately, not all who are eligible for CHIP know of this benefit. By 2002, Medicaid will expand coverage to include all children under age 19 with incomes below the federal poverty level. The bottom line for this insurance shell-game is this: From 1994 to 1998, the number and percent of uninsured children increased. Sixteen percent of children were without insurance in 1998. Two-thirds of them are in low-income families.

The House Is On Fire
More than half of the uninsured are Caucasian, but racial and ethnic minorities are much more likely to be uninsured. Twenty-five percent of African Americans in the United States don't have health insurance, compared to 14 percent of Caucasians. Hispanics are the least likely to have insurance among all ethnic and racial groups. Thirty-five percent of them are uninsured, according to the "1999 American College of Physicians-American Society of Internal Medicine (ACP-ASIM) White Paper on Uninsured Hispanics."
          Beneath her professional composure, Dr. Helen Burstin's outrage simmers at what comes through her door every day at La Clinica Del Pueblo free clinic in Washington, D.C. Take, for example, a 37-year-old Latino woman-dead from cervical cancer. "It's a completely preventable disease," Burstin says. "No one should have cervical cancer in this day and age."
          And then there's Burstin's patient who has a brain tumor who's waited two months for a CT scan. And another with a stroke who should be on blood thinners, but he can't get in to see a specialist. "I'm putting him at risk for another stroke," she says, "while I beat the bushes looking for a specialist who'll see him. We spend most of the day on the phone calling friends of friends-the informal network that is already overburdened. You don't have to hunt for stories here. All my patients are uninsured, and all have trouble getting access."
          Burstin says Hispanics have it extra rough in Washington, D.C., where the safety net has bigger holes in it compared with other states. "I've got a guy with an ugly stress test and a bad heart who needs to see someone now," Burstin says. But even if she finds a doctor who'll treat him, hospitals don't want to give free tests, financially beleaguered as they are by the 1997 Balanced Budget Act. "The people who get hit the hardest in our somewhat tattered health-care system are the ones who can't get timely care. They usually don't have insurance. They're the ones who get real morbidity, which costs all of us. As a society, we're really shooting ourselves in the foot by not giving these people access to care," Burstin says.
          Hispanics are more than twice as likely to work for an employer who does not offer a health plan than are African Americans or Caucasians. Thirty percent of Hispanic children are uninsured, compared to 20 percent of African-American children and 13 percent of Caucasian children. "Hispanics," the ACP-ASIM report says, "bear a heavier burden of illness and death because they don't have insurance." Hispanics are six times more likely than Caucasians to suffer end-stage renal disease caused by diabetes. Mexican-American women are up to 3.5 times less likely than the general population to seek care to control hypertension. Uninsured Hispanic women with breast cancer are 2.3 times more likely to be diagnosed at a later stage. And uninsured Hispanic men with prostate cancer are 3.75 times more likely to be diagnosed with late-stage disease.
          It's tempting to chalk these differences up to genetics, but you would be wrong to do so, Richter says. "Social class, not race or ethnicity, predisposes someone to higher mortality," she says.
          Canadian studies compared cancer survival across socioeconomic lines and found less class difference in survival in Canada compared to the United States. "One could conclude," Richter says, "this is because Canada's system provides equal benefits to all Canadians, whereas we don't. U.S. studies show that when the insured and uninsured are hospitalized with the same illness, the uninsured are more likely to die, mostly because they delayed care, not because they are Hispanic or black."
          The uninsured life for African Americans isn't much easier, especially for men. Between 1980 and 1990, African-American men lost 1.8 years of life expectancy, making them the only demographic group actually dying younger than they used to. As a group, poor African-American men are disenfranchised not only from the health-care system but from society as a whole, with the highest rates of incarceration and violent death. "Men are dying-the house is on fire," says Chicago internist Dr. Eric Whitaker. "Most government health programs and social services focus on poor women and children." So Whitaker decided to do something for this overlooked group of Americans.
          Last year, he opened Project Brotherhood, a free clinic for African-American men in his own Woodlawn neighborhood on Chicago's South Side. The community boasts one of the worst rates in the city for HIV, sexually transmitted diseases, heart disease and homicide.
          "I talked to guys," Whitaker says, "and learned that not having insurance is only one barrier to health care for black men. They told me they felt disrespected when they went to traditional clinics. The doctors weren't like them. Most of the patients were women and children, and [the men] felt uncomfortable. I learned I had to create another reason besides health care to get them to come to the clinic, so we offer free hair cuts and pizza and a relaxed atmosphere where they'll feel comfortable."

Frayed Safety Net
Though well-intentioned, the nation's safety net is catching fewer of the nation's most vulnerable, according to an Institute of Medicine report. How the nation's safety net currently works to help the millions of uninsured can be compared to the futility of an administrator trying to sell cookies to save a financially troubled hospital-it just doesn't work.
          "If the economy slumps and the number of uninsured climbs to 50 million, we'll have something approaching a domestic crisis on our hands," says Dr. Quentin Young, a Chicago internist and national coordinator of Physicians for a National Health Program.
          Richter thinks of the nation's safety net as a false-bottomed prop in a black comedy when she remembers the young electrician in florid diabetic renal failure who died at age 37. She saw him for seven years. "When he went blind and was unable to work, he qualified for Medicaid," she says.
          Officially disabled, the electrician qualified for Social Security Disability. But then he no longer qualified for Medicaid, which meant he could no longer pay for his medicines, which Social Security does not cover. To pay for his medicine, the blind electrician went back to work. He'd feel his way along the wires. "The hoops of desperation people go through-it's disgraceful. It makes me sick," Richter says.
          Surveys show most Americans believe the uninsured can get health care if they really need it-if not at a free clinic, then at an emergency room or through some government program. And most Americans think Medicaid takes care of the poor.
          But Medicaid covers only 41 percent of the poor, even less than it used to since welfare-to-work reforms. Single adults and childless couples don't qualify for the program. LeBow believes a lot more who aren't on Medicaid could be if states made it easier to apply. "States make it hard by requiring 16-page applications," he says. "It's the official policy in most states to try to minimize how much they have to spend on Medicaid."
          There's always the emergency room, the primary source of care for many uninsured and also the most expensive. But by the time most uninsured go to the ER, their problem is much more serious. One of Richter's patients showed up at the ER with a massive hand infection that was streaking up his arm from cellulitis. "It would have been so much cheaper if he'd come in earlier and got treated as an outpatient instead of needing inpatient IV antibiotics and debridement," Richter says.
          Many uninsured are afraid to go to the ER, according to Mueller. "They're afraid of the cost," he says. "They're afraid they'll end up with a collection agency after them."
          Even when the uninsured go to the ER for nonemergencies, they can't afford to pay for follow-up care. "They go untreated and sometimes undiagnosed," Mueller says. "Clinics won't even offer them an appointment."
          And emergency rooms can't do much for people with chronic diseases anyway, Richter says. "You can't get dialysis in an ER. You can't get chemotherapy or blood pressure pills."
          In the end, defaulting the uninsured to emergency rooms costs more than insuring them and is one reason, according to Mueller, U.S. health-care costs are so high compared to those of other countries. The United States, for example, spends $4,000 per capita, twice as much as Canada and almost twice as much as Germany, both of which insure all its citizens. "We know it's cheaper to provide universal coverage," Richter says. "Instead of paying for insurance, we should pay for care and stop filtering the money through expensive insurance overhead. Instead, we have competing entities vying for the healthy and ignoring the 10 percent who generate 70 percent of health-care costs."
          Free clinics and community health centers provide care for many uninsured (see "An Even Exchange," p. 37), but most have limited resources. They see patients on a walk-in basis and do not always operate on a preventive primary care model, preferring instead to mainstream patients into the system for follow-up care. "These clinics are simply altruistic responses to an intolerable problem," Young says.
          Doctors and hospitals do not provide as much charity care as they used to, because of managed care's focus on revenue and productivity, according to a study published in the Journal of the American Medical Association. "The charitable impulse in American medicine has been attenuated," Young says.

What a Difference Insurance Makes
Life without health insurance can mean the difference between getting care and not getting it and in some cases between living a long, healthy life and a short, unhealthy one.
          What life without insurance does to people's pride and dignity bothers LeBow almost as much as the unnecessary sickness and death. LeBow saw an older man with congestive heart failure who didn't come in to be treated until it was so bad his legs looked like water balloons. "Why didn't you come in?" LeBow asked him. "Because I still owed you $12 from the last visit," the patient replied. "People have pride," LeBow says. "If they don't have insurance, they won't come in no matter how sick they are."
          "I don't want to be a beggar," a 64-year-old librarian told Mueller. "I just pray I can make it seven more months when Medicare will pay for what I need."
          Then there's Mueller's patient who maxed out her credit cards to get the medicine she needed because she didn't want to burden her son. "I have my pride," she said simply.
          Whether you have it or don't have it, health insurance controls your life, Mueller says. "I've got patients who won't get married because they'll lose their coverage. I've got patients who got married just so they could get insurance. People refuse to quit jobs they hate because they'll lose their insurance."
          And then there's the Hispanic mother who came to LeBow's clinic with her 17-year-old son, who needed antibiotics for his septal defect and an inhaler for his asthma. The clinic's pharmacy only charged her $8, yet the mother started sobbing and left without the medicine. "We went after her," LeBow says. "She didn't have any money and felt ashamed. The system skims off the healthy and leaves the poor and sick to fend for themselves. It humiliates people and makes them beg. It's shameful. I see it every day and it makes me very angry."

The Toll It Takes on Doctors
Patients without insurance force physicians to compromise their best medical judgment. Richter recalls a 60-something uninsured driver's education instructor who called in complaining of chest pain. "She begged me not to send her to the ER, because she wouldn't be able to pay the bill," Richter says. She tried to explain that she can't diagnose chest pain over the phone, but the woman refused, so Richter did her best differential diagnosis by phone. "It turned out to be a respiratory problem," she says, "but it was still the wrong way to handle it. You feed into what patients want and end up not giving the best medical advice."
          Another of Richter's patients was an obese diabetic with atrial fibrillation and chest pain. She refused to be worked up at the hospital because she'd have too many bills to pay. "I treated her like an outpatient at her home with beta blockers," Richter says. "I called her four times that night. It was so inappropriate. The system forces you to practice inferior medicine on the uninsured. You change medication every time a patient comes in and switch them to whatever free samples you happen to have that day. That's wrong. It goes against everything we were taught."
          The only thing keeping a suicidal schizophrenic stable is the free samples Mueller finds on his shelf. Meanwhile, the woman's husband is on 10 different medications. "He wants me to give him free samples of 10 different medicines until he can find work," Mueller says. "It's crazy."
          Richter recalls putting a fast-food worker who needed amoxicillin on the much stronger Augmentin instead because she had free samples and the woman couldn't afford the amoxicillin. "Every day, I practice survival medicine in an industrialized country," Richter says.
          When Burstin offers medicine, patients ration it. "I ask them," she says, "'Are you actually taking the medicine?' They smile sheepishly, embarrassed, and tell me they take it every other day so it'll last longer. Those with hypertension are at increased risk for stroke. The diabetics are at increased risk for eye and kidney disease."
          It's the lies that gnaw at Mueller. "The doctors lie, and the patients lie," he says. "I even had a minister who lied so he'd get the care he needed. It's ridiculous."
          Richter routinely neglects to bill patients whom she knows can't pay. She exaggerates symptoms so hospitals will admit her uninsured patients. "You have to lie," she says. "It's degrading to have to do it, but it's the right thing to do. I took an oath to help patients."

New Physician contributing editor Howard Bell is a medical writer living in Onalaska, Wisconsin.