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Uninsured in America goes to the heart of why more than forty million Americans are falling through the cracks in the health care system, and what it means for society as a whole when so many people suffer the consequences of inadequate medical care. Based on interviews with 120 uninsured men and women and dozens of medical providers, policymakers, and advocates from around the nation, this book takes a fresh look at one of the most important social issues facing the United States today. A new afterword updates the stories of many of the people who are so memorably presented here.
This book was born at a Harvard health care symposium when Rushika, a physician specializing in health policy, met Susan, an anthropologist who recently had returned to the United States after living for two decades in Israel and Japan, countries that have national health care programs. With the fresh eyes that an outsider sometimes can bring to a situation most of us take for granted, Susan asked Rushika: "Where are the bodies? If forty million Americans don't have health insurance, there must be a lot of bodies. I would think that American cities would look like Delhi or Calcutta, where trucks collect corpses from the streets each morning. Where is America hiding its uninsured sick and dying citizens?"
Rushika initially responded with standard answers: We have government programs such as Medicaid and Medicare. Many counties run clinics with sliding-scale fees. Our hospitals offer charity care to indigent patients. And, with the support of the Bush administration, churches have opened up faith-based clinics.
Yet, when the two of us began to look more closely at the statistics, we saw that theseresponses did not speak to the actual experiences of many people in our country. In 2003, Medicaid covered only slightly more than half of Americans whose family income was below 200 percent of the poverty line (that is, below $36,800 for a family of four). Public clinics typically are so overwhelmed that the wait for an appointment can be several months. Hospitals often fail to inform patients that charity programs exist, instead simply billing their uninsured patients and turning their accounts over to collection agencies. In fact, although the government requires not-for-profit hospitals to offer charity care, many hospitals avoid doing so by redefining the uncollectable debt as "charity care." And faith-based clinics, which were touted as a compassionate safety net to take the place of big government bureaucracies, usually seem to flounder, seeing patients only a few evenings each week and relying on volunteer physicians to squeeze in a couple of clinic hours a month on top of their already overflowing private practices.
So, we asked each other, where are the uninsured? Who are they? Why are they uninsured, and how do they scrape by? What does the absence of consistent access to medical care mean in their lives? What is its impact on their jobs, their families, their aspirations? And, equally important, what does the fact that more than forty million Americans lack reasonable access to health care mean for our country as a whole? How does the divide between the health care "haves" and "have-nots" reflect or contribute to other painful social and economic ills?
Combining a medical perspective with the tools of anthropology-in-depth interviews and extensive "hanging around" with uninsured individuals and families (a technique anthropologists refer to by the more elegant name participant observation), we set out to meet Americans around the country who are scraping by without medical coverage.
During 2003 and 2004, we traveled to Texas, Mississippi, Idaho, Illinois, and Massachusetts, talking with those who determine health care policies as well as those who live (or die) by those policies. We spoke to people whose stories represent the more than twenty million middle-income families and the millions of working-poor families who are uninsured. We listened to Americans who had seen loved ones die because they did not have medical coverage. And we heard the stories of Americans who were forced to declare bankruptcy or sell their homes to pay for medical care. By the end of our journey, we had conducted wide-ranging interviews with more than 120 uninsured Americans and with approximately four dozen physicians, medical administrators, and health policy officials.
We met uninsured men and women through local churches, community organizations, friends, and colleagues; at yard sales, bars, and libraries; in lines at local pharmacies and grocery stores; and via notices tacked up in public places. One contact often led to another. Our conversations covered matters directly related to illness and medical care as well as more general personal anecdotes, family stories, political opinions, observations about neighborhoods and workplaces, and a fair amount of laughter and tears.
Not everyone we met wanted to speak to us. Some people were embarrassed that they were uninsured; some were too busy managing several part-time jobs. Other individuals, based on past experiences, had learned not to trust strangers who come asking personal questions. Still others simply were not interested in talking about private matters.
But many individuals welcomed the opportunity to speak their minds. For some of our interviewees, the $25 honorarium we offered represented their family's next few meals. Others appreciated the chance to talk to their heart's content to someone who really listened-it was important to them that we could witness the truth of their experiences. And some people made it clear that they agreed to talk to us because they wanted to help change the system by letting other Americans (often referred to as "the big shots in Washington") know how hard it is to get by without adequate health care.
Reflecting the common expectation that women are responsible for the health of their families as well as for their own health issues (which often are seen as more "complicated" than men's issues), many more women than men shared their stories with us. We met with twenty Hispanic families and twenty African Americans. These numbers echo the fact that Hispanics and African Americans are more likely to be uninsured than white Americans, though white Americans constitute the absolute majority of the uninsured. Our youngest interviewee was nineteen, and the oldest sixty-four; most were in the middle of that age range. People spoke with us about the health concerns of their entire families over periods of many years.
On our journey, we gained a better understanding of the legitimate economic forces that must, in one way or another, place some limits on health care access. We learned, too, what it means to be part of the group of Americans who have been involuntarily assigned by society to carry the burden created by those forces and whose bodies bear the scars of that burden.
The "Problem" of the Uninsured
The familiar phrase "the problem of the uninsured" conjures either an image of troubled, "problematic" individuals or the notion that these unfortunate persons constitute a "problem" for the rest of society. The real problem, however, begins at a far more basic level. The inability of a large portion of the U.S. population to access health care services in a systematic and medically competent manner is a consequence of social and economic developments that predate and underpin individual life histories.
Unlike the medical systems of most other Western countries, America's health care structure centers on an increasingly for-profit system of employment-based private insurance. Employer-sponsored health coverage expanded rapidly in the United States during World War II, when the shortage of civilian workers encouraged employers to look for creative ways to attract and retain employees. In order to prevent inflation, the War Labor Board put a ceiling on all wages. It ruled, however, that unions could bargain for health care benefits without violating the wage freeze. At the same time, the Internal Revenue Service ruled that health insurance premiums would be treated as a nontaxable business expense.
During the postwar era of economic growth, employment-based health insurance became the norm in the United States, and it indeed worked reasonably well for many Americans. During this period, millions of blue-collar workers held long-term union contracts guaranteeing health care benefits, and white-collar workers expected to remain with and rise through the ranks of the companies in which they built their careers.
In recent years, however, the relationship between employment and health care has become increasingly problematic. First, as the nature of employment has changed globally, fewer people are able to stay in the same job for many years. As a result, jobs no longer serve as stable platforms for health care arrangements. Second, the fragmented nature of the American health care system, together with the political dominance of the medical, insurance, and pharmaceutical industries, has allowed health care costs to soar far above the costs for comparable products and services in Canada, Great Britain, and continental European countries. As the cost of health care rises, more employers look for ways to avoid providing insurance to their employees. The millions who find themselves uninsured are now priced out of the health care marketplace.
For growing numbers of Americans, the convergence of these two developments means that their lives have become trapped inside what we call the death spiral.
How the Death Spiral Works
In insurance lingo, a death spiral occurs when a health plan starts attracting sicker patients, which causes the price of premiums to go up, which causes more healthy people (who have other options) to leave the plan, which causes the remaining pool to be proportionately sicker, which causes the price of premiums to increase even more, eventually resulting in the company going bankrupt-in other words, dying.
The image of a death spiral is a useful metaphor for thinking about the role of access to health care within the larger context of American social and economic life. Because employment and health insurance are tightly linked, job disruptions such as layoffs or firings, starting one's own business, or taking time off to care for small children or elderly parents can lead to the loss of health coverage. That loss can easily lead to health concerns going untreated, a situation that can exacerbate employment problems by making the individual less able to work. Alternatively, the downward spiral can begin with health problems that lead to employment problems, making it less likely that one will have health insurance and thus reducing the chances of solving the original health issues.
Whatever the starting point, once a person enters the death spiral, it is difficult to escape. Because employment adversity is so thoroughly intertwined with medical adversity, those caught in the spiral cannot amass either the bodily or the financial resources needed to break out. Descent through the death spiral, for millions of Americans, leaves irrevocable marks of illness on their bodies and souls.
In a broader sense, the death spiral serves as a metaphor for the deep changes taking place in American society as the demarcation between rich and poor-a traditionally fluid distinction in our society-hardens into a static barrier between the caste of the healthy and the caste of those who are fated to become and remain sick.
Portals into the Death Spiral
Individuals are pulled into the death spiral through many different portals. Corporate restructuring, outsourcing, divorce, family crises, chronic illness, serious accidents, and racial discrimination open some of the most recognizable doors. Indeed, given the number and diversity of entrances, all Americans, except for a small number of extremely rich individuals, are vulnerable to the death spiral's pull.
The majority of people we met in our travels across the country lack consistent access to health care of reasonable quality despite having been employed all or most of their adult lives. Approximately one-third of the people with whom we spoke are well educated but have had the misfortune to end up in jobs that do not offer insurance: substitute teachers, adjunct professors, part-time social workers. These Americans have not chosen to be uninsured; rather, their employers-like Loretta's-have found it cost-effective to reduce the number of permanent full-time positions while maintaining an unprotected pool of workers whose jobs by definition do not offer benefits.
Contingent workers now represent more than 25 percent of the American workforce. Some industries, such as the food industry, employ temporary, part-time, transient workers almost exclusively. Other industries retain some full-time employees but outsource certain jobs that were formerly performed in house. In the Rust Belt, manufacturing plants employ increasing numbers of temporary workers through temp companies such as Manpower. These job slots have replaced the full-time, unionized jobs of previous years, allowing employers to cut costs by not providing benefits. Those beginning their working lives are particularly hard-hit by the scarcity of jobs with good benefits: one in three young adults between the ages of eighteen and twenty-four in the United States lacks health care coverage.
Some people described in this book lack insurance because the industries in which they worked have all but closed down: mining, forestry, cotton fields, steel mills, or manufacturing plants that have relocated to other countries in order to tap into a lower-wage employee pool. Barely treading water, the workers left behind now labor in temporary jobs-especially in the service sector-that do not offer health insurance. Unable to sell their homes in towns that have lost their economic foundation and then their population base, these workers are locked into futures that look grim indeed.
Some of the people we present are between jobs. Some are starting new jobs that require a six-month waiting period before insurance is available. Others work for such low salaries that they cannot afford insurance; still others work for employers who do not offer insurance at all. A small number of those we met-typically (but not always) the sickest, poorest, and oldest-have been able at one time or another to turn to the government for a program that provides access to health care. But far more simply fall through the cracks: they are not eligible for government assistance, and their employment situation does not make health insurance possible.
Some people in this book are uninsured because, like Greg, they struck out on their own and opened small businesses. With limited cash flow, especially during the first years of operation, health insurance is a fiscal impossibility. Others are uninsured because they work for a small business whose precarious financial situation precludes providing health benefits for employees.
Other portals into the death spiral originate in difficult, challenging, or shifting family situations. Many people have health coverage through their spouse-which means that divorce can lead to a break in health care coverage. Several of the women we interviewed had fled abusive or violent marriages and thus lost their health insurance. One middle-aged woman explained to us that her health insurance disappeared when her husband of twenty years "traded me in for a new model." Other women lost their insurance when they had to quit work or reduce their working hours in order to care for aging parents, sick children, or disabled spouses.
Some people whose voices are heard in this book are unable to work because of chronic illness: back pain (perhaps caused by an earlier job-related injury), high blood pressure, mental illness. In some cases, these people would be able to work at jobs that do not demand constant physical stress, but such jobs simply are not available to them. Without employment, they cannot obtain the medication they need to manage their chronic illnesses, and so they find themselves caught ever more tightly in the death spiral. Most of the people we met work despite suffering from an assortment of chronic illnesses. In addition to the strain of working with pain or other symptoms, they live with fears about how they will manage if or when their conditions deteriorate. Indeed, we have come to see chronic illness as both a portal into the death spiral and an integral component of the descent pattern.
A small number of those with whom we spoke lack insurance because they do not understand how the health care system works. They do not quite grasp that they spend more money paying out of pocket for treatments and medicines than they would spend paying for insurance. A larger number of people understand the system only too well: they are caught between squabbling companies-health insurance, workers' compensation, and automobile insurance companies, for example-with each company claiming that the other should be covering the patient's medical costs. Often, the individual caught in the middle quietly goes bankrupt, paying out of pocket while the corporate bickering goes on.
Excerpted from Uninsured in America by Susan Starr Sered Rushika Fernandopulle Copyright © 2005 by Regents of the University of California . Excerpted by permission.
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|Prologue : Loretta and Greg's story|
|Introduction : the death spiral||1|
|1||From working class to working poor : the death of industry in America's heartland||21|
|2||Medicaid, welfare reform, and low-wage work in the new economy||40|
|3||Family matters : divorce and domestic violence||57|
|4||Who cares for the caregivers? : love as a portal into the death spiral||72|
|5||The fox guarding the henhouse : work-related injuries and the vagaries of workers' compensation||86|
|6||Risky business : the self-employed, small business owners, and other American entrepreneurs||107|
|7||Young, sick, and part-time : the vulnerability of youth and the new American job market||122|
|8||Mental health matters : a Mexican immigrant hits the bureaucratic wall||140|
|9||Race matters : health care stories from Black America||152|
|10||Descent through the death spiral||163|
|App. 1||A primer on the U.S. health care system and the safety net||195|