This past spring the Washington Post ran a series of front-page stories in its Metro section about a 12-year-old boy, Deamonte Driver. Deamonte had recently died from an infection–brought on by an untreated cavity. “A routine $60 tooth extraction might have saved him,” the article stated. “If his mother had been insured. If his family had not lost its Medicaid. If Medicaid dentists weren’t so hard to find. If his mother hadn’t been focused on getting a dentist for his brother, who had six rotted teeth.”
The terms “chilling,” “devastating,” and “appalling” all apply to Deamonte’s story–but not “unusual” or “surprising.” Indeed, what makes it all the more horrific is that the tragedy of people like Deamonte is all too routine. The data tell the magnitude of their stories in the aggregate. Reports in 2002 and 2004 from the highly-regarded Institute of Medicine on the consequences of being uninsured concluded that Americans without coverage are one-third to one-half less likely to receive health screening services than those with insurance, and if they eventually get the preventive care that insured Americans usually get–like mammograms, pap tests, and colonoscopies–too often it’s too late. They live sicker and die sooner than those with insurance. That same report concluded that at least 18,000 Americans die prematurely each year–that’s 50 deaths per day–because they have no health insurance. According to the latest Census report on income, poverty, and coverage, there are more than 45 million uninsured in the United States, about 16 percent of the population. That’s about eight million more uninsured people than the last time we had a serious debate about access to health care and health insurance, in the early 1990s.
Almost nine million of the uninsured are kids like Deamonte Driver. Were it not for the State Children’s Health Insurance Program (SCHIP), which rose in 1997 from the ashes of the Clinton health plan, there would be about 2.5 million more uninsured kids. Eighty percent of the uninsured are from working families. Nearly one-third of Hispanics, 20 percent of African-Americans, and 11 percent of whites are uninsured; that’s more than 13 percent of U.S. citizens and a whopping 44 percent of non-citizens. And after leveling off in the late 1990s, the costs of insurance–for employed and self-employed workers as well as employers–have again increased dramatically in the past few years. Premium increases averaged about 14 percent in 2003, 11 percent in 2004, and 9 percent in 2005, far above the increase in overall inflation and wages. Not surprisingly, both employers and workers increasingly choose, respectively, not to offer coverage, or to run the unacceptable risk of not accepting coverage because they can’t afford it.
If these data are so compelling, why aren’t people storming the halls of Congress or their state capitol to get those 45 million people insured? As longtime Republican pollster Richard Wirthlin often has noted, data gets you only part of the way to action: People are informed rationally but motivated emotionally. Pollsters and pundits call it “compassion fatigue,” a sense of helplessness, resignation, and acceptance many feel when confronted by systemic yet very personal problems that seem too massive to overcome. The numbers help, but it’s the stories behind the numbers that, when woven together, matter most and move engaged citizens and their elected representatives to act. And so perhaps what is stalling our progress toward resolution isn’t a lack of appreciation for the data, but rather a lack of appreciation for what the data mean–in human terms. We need to be jolted out of our compassion fatigue.
That is exactly what Jonathan Cohn, a senior editor at the New Republic, is trying to do in his important and timely book, Sick: The Untold Story of America’s Health Care Crisis–and the People Who Pay the Price. Rather than adding data to our collective compassion fatigue, Cohn’s powerful tales of ordinary Americans whose lives turned into nightmares or ended because they lacked health insurance tap deeply into our will to reverse their tragedies and to right these wrongs. Linking Americans–young and old; urban, suburban and rural; white and blue-collar; workers in large firms and the self-employed–with little in common other than their families’ tales of battling the system, Cohn poignantly and powerfully gives names and faces to the numbers we read about every day. Moving through Boston to Los Angeles and Washington, D.C., with many stops in between, Cohn weaves tales of the un- and under-insured against the history of the employer-provided health insurance system, the system that has driven postwar American health care but that today excludes 45 million people.
Take Gary and Betsy Rotzler, a couple from just outside of Cooperstown, New York–high school sweethearts, college graduates, young parents of three kids. Gary was a successful engineer for a big defense contractor that was taken over by a larger contractor and downsized. Gary got out, was hired by a rival firm, and then quickly was laid off. Eventually, he was rehired by the new parent of his old company. But by the time Gary was rehired, as a temporary worker, the company no longer offered health benefits, and Gary couldn’t afford them on his own. Suddenly, the Rotzlers were among the millions of uninsured families. Soon friends and family began to observe that “something was wrong with Betsy,” whose physical strength was legend. She began putting off regular medical exams, despite her chronic fatigue and back pain. Gary later realized that Betsy had feared the worst medically–and didn’t want to bankrupt the family with the big bills. By the time the lump in her breast was diagnosed as cancer, even after she was admitted to a major cancer center in New York City, it didn’t make any difference. Within days, Betsy fell into a coma. At the hospital that last night, Gary stepped away from her bedside to sign some forms, including one promising to pay the medical bills. By the time he got back to the room, the kids were arriving with “Get Well” balloons. But Betsy was already gone, leaving behind a grief-stricken family and tens of thousands of dollars of medical debt. Later, Gary recalled what it felt like “when you walk into a doctor’s office and you’ve got to say you don’t have insurance. There is a mood swing, there is a change, no matter how nice that person is behind the desk. You’re a different class of person.”
Americans get what this means: that if it can happen to people like Betsy and Gary, much less to kids like Deamonte, it can happen to you. It can happen to any of us–and is happening, as Cohn’s litany of non-coverage horror stories tells us, all too often. Cohn isn’t a polemicist, railing against the system, though he does document its insidiousness and unfairness as well as the randomness that hits some and not others. In each story, he presents not only a personal tale of ordinary Americans, but why their failures in insurance and care occurred. Each story, in other words, provides not only insight into one family’s struggles, but also into one aspect of the failing health care system: how the current health insurance market evolved, the advent and erosion of employer-based health coverage, changes in state and federal approaches to Medicaid, the pressures on hospital emergency rooms and outpatient clinics, managed care, and the demise of charity care. Cohn sees few if any real villains, although he does view hospital lawyers, insurance company executives, and President George W. Bush with particular disregard. (With respect to Bush, whose most recent State of the Union address acknowledged the importance of access to health care, it’s important to note that the system long precedes his appearance on the political scene.)
But as detailed a picture as Cohn portrays about America’s health care access crisis, he only touches on the fact that even when you can get care, its quality and outcomes are too often wanting. All Americans should have stable, affordable health care coverage. Achieving that would be monumental, but let’s not kid ourselves that it would automatically result in improved health. Most indicators of Americans’ health, for example, show that we’re far below the infant mortality and life expectancy rates of developed nations with which we usually compare ourselves favorably–countries such as Australia, Canada, France, Norway, and Japan. And we’re slipping, not improving. For infant mortality, the United States ranked 18th in 1980; in 2005, it had fallen to 25th, just above Hungary and Poland. We spend far more on health care on a per capita basis and as a percentage of our gross domestic product than any other nation–often twice as much or more.
Nor are all those bucks getting us nearly as much bang as they should. Americans tend to think that, once we have access to care, we get the best health care in the world, and that more care is better care. But neither more care nor more spending improves patient outcomes; indeed, the opposite is most often true. A seminal study by Beth McGlynn and other researchers at RAND indicates that Americans typically get only half the standard of care recommended by the physicians who determine what constitutes quality, evidence-based care for a wide variety of medical conditions. Jack Wennberg, Eliott Fisher, and their colleagues at Dartmouth Medical School studied records of 4.7 million Medicare patients hospitalized with conditions such as cancer, heart and lung disease, renal failure, and diabetes. They found not only huge variations in Medicare spending among different regions in the United States (spending per patient differed by more than 2.5 times from the lowest- to highest-cost region), but that less (but more efficient) hospital and physician resource use produced better patient outcomes. In fact, if every hospital in the country followed the standard treatment practices of the regions of the country with the best outcomes, they concluded, Medicare could save about $10 billion per year.
Yet even improving health coverage rates, while critical, won’t automatically make us healthier. While there has been a steep decline in tobacco use since 1980, from 33 percent to 21 percent of American adults, the decline in smoking rates among older teens appears to have leveled off. At the same time, obesity in America is steadily and perilously going up. The nationwide epidemic of obesity threatens not only adults, of whom almost two-thirds are overweight or obese, but the 25 million overweight or obese kids, in whom we’re now seeing unprecedented rates of what was once called “adult onset” diabetes, hypertension, and asthma. We are raising the first generation of American children who could, as adults, live sicker and die at an earlier age than their parents. There are lots of reasons for this, but the most basic and simple is that our kids’ “energy balance”–burnt energy in relation to calories consumed–is seriously out of whack.
The health of children is what will determine the health of our country for years to come. Parents know this: One of Cohn’s most compelling stories focuses on the travails of a young boy in Austin, Texas, Parker Hilsabeck, and his parents’ relentless campaign to get kids like him covered. Like Deamonte Driver, his story is a call to action on health care access for children, and it makes Cohn’s book all the more timely: This year SCHIP is ten years old and up for renewal by Congress. This may be the most significant domestic policy action that Congress takes this year, because extending and improving SCHIP is a harbinger of a larger national debate about health care coverage that may reach a crescendo during the presidential campaign in 2008. Debate–and action–has already started, as is often the case, not in Washington, D.C., but in states like Massachusetts, Illinois, Georgia, California, and Maine. Cohn’s book heightens the growing awareness that access to health care is both a moral and economic imperative, and hopefully it will strengthen a growing national determination to do something about it. Ultimately, resolving the problems of coverage and access will be the first essential step toward a healthier America, but we still have a long hill to climb.