Unequal Coverage: The Experience of Health Care Reform in the United States

Unequal Coverage: The Experience of Health Care Reform in the United States. Jessica M. Mulligan and Heide Castañeda, eds., New York: NYU Press, 2018, 304 pp.

In April 2013, former U.S. Democratic Representative Barney Frank lamented, “I think we paid a terrible price for health care. I would not have pushed it as hard.” Mulligan and Casteñeda’s book, Unequal Coverage: The Experience of Health Care Reform in the United States, shows just how terrible that price has been. Contributors to this edited volume acknowledge that the Democrats’ 2010 Affordable Care Act (ACA or “Obamacare”) produced substantial benefits for many Americans: It expanded coverage to 20 million uninsured people, created protections against insurance discrimination for women and people with preexisting conditions, and more. But this book sheds light on the negative, mostly unintended, consequences of health care reform. These negative consequences include a deepening of health inequalities in America, the further devolution of public responsibilities onto private individuals, and the political polarization of citizens in conservative “red” and liberal “blue” states due to the fueling of nativist and racial resentments.

The purpose of Unequal Care is to capture the diversity of on-the-ground experiences in the post-ACA safety net health care system. A team of 11 anthropologists tracked and interviewed patients and providers in efforts to understand what people think, feel, and experience under health reform. The book is organized as a sequence of case studies in 10 chapters, grouped into three sections based on the cross-cutting themes of stratification, risk, and responsibility. Some of the case studies take place in red states where governors refused federal funds to expand health coverage for the poor, nominally out of loyalty to conservative principles (e.g., Texas, Florida, Mississippi). Others take place in blue states where governors used the ACA to substantially expand access to health insurance for low-income populations (e.g., California, Massachusetts, New York).

Even with such diversity, the case studies are skillfully integrated through a comparative approach that drives home important conclusions about how the ACA has restructured social relations, meanings, and experiences in care. Take the theme of “stratified citizenship,” which refers to the ACA’s differential gradation of rights and opportunities granted to different groups dwelling in the same state. (For example, under the ACA, some, but not all, classes of immigrants are recognized as eligible for coverage, thus stratifying people on the basis of citizenship status as more or less deserving of health care.) By comparing these diverse cases, Unequal Coverage shows how health reform has stratified citizenship in blue and red states alike, only in differing ways. Even in chapters by Tiffany Joseph and Elise Andaya about blue Massachusetts and New York—states where populations enjoy expanded coverage under the ACA—stratification is still present because of the exclusion of immigrants and the complex dynamics of bureaucratic disentitlement. In New York City, low-income ACA-covered patients were observed running a gauntlet of paperwork, clearing numerous bureaucratic hurdles, and then waiting for hours just to be seen once by a provider. Bureaucratic disentitlement thus emerges as a form of implicit health care rationing. By stark comparison, in red Texas, which resisted the ACA as much as it could, Emily Brunson documents a much more explicit form of rationing health care coverage across different citizenship categories based on the specifics of a person’s immigration status and income.

Some of the most vivid expressions of what is wrong with U.S. health care in the post-ACA era come from Milena Melo’s case study of undocumented immigrants living with end-stage renal disease (ESRD) in the borderlands of Texas. Here, the advent of the ACA led state lawmakers to weaponize access to health coverage as a de facto anti-immigration policy. For undocumented persons living in poverty on the Texas–Mexico border, who need regular dialysis to control the debilitating symptoms of ESRD, there is no access to medical care outside the local public hospital’s emergency room. Yet, to qualify for dialysis in the emergency room, one’s condition must be deemed a true emergency according to federal definition. What results is people being kept in a chronic state of “barely alive.” The health care system is not letting them die, but they must risk death to find relief in the emergency room.

Unequal Coverage will be of interest to medical anthropologists and sociologists, as well as their students, as it is a book that captures the lived experience of health reform. But this book should not be missed by those of us who are students of policy and politics, as it is a fascinating study in implementation. It captures the many layers of unintended consequences that invariably flow from incremental policy strategies designed to shore up gaps in insurance coverage within complex, market-based health care systems. Readers will come away appreciating that the unintended consequences of the ACA have been far-reaching, extending well beyond the health care system. In the Conclusion written after the November 2016 Republican electoral victory, Mulligan and Castañeda explain how the ACA has supercharged today’s racialized politics of resentment. Low-income, conservative white Americans in red states, who have been deprived of the ACA’s benefits by their governors, watch as people of color in blue states enjoy expanded coverage. Meanwhile, “dog-whistling” conservative politicians use the ACA to fan the flames of racial discord.

Early in the book’s Introduction, Mulligan and Castañeda share their reservations about producing a book that sheds a negative light on health reform. After all, the fate of the ACA—and the 20 million people it covers—currently hangs in the balance, with a Republican-controlled federal government threatening to dismantle it. I think that the authors of this book were right to choose a path of simply reporting what they observed on the ground. In doing so, they help us understand the radically different meanings of health reform for regular people on the two, polarized sides of America’s red/blue divide. This, in itself, could be a step toward bridging it.

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