As we reflect on the possibility of a repeal or at least substantial dismantling of the Affordable Care Act (ACA), much of the debate has and will likely continue to center on costs and access to insurance. Indeed, controlling costs and expanding access to health insurance are the two primary aims of the ACA, and these aims are important. We know that access to insurance affects people’s health outcomes, access to care, quality of care received, and financial stability. We also know that a concentrated uninsured population negatively impacts health care costs, access, quality, and even some health outcomes—like heart attack mortality—for the insured.
But there is also a less visible and ultimately consequential social cost of uninsurance for Americans. The individuals and communities that have been excluded from insurance are not random. Even after the ACA expanded access to insurance, people with lower incomes and African Americans and Latinos remained disproportionately more likely to be uninsured. Uninsurance places a strain on individuals, providers, and health care markets, and the consequences go beyond health and health care. They impact the social lives of individuals and communities, as well. A 2003 report from the Institute of Medicine proposed as much: in addition to thinking about the economic effects of uninsurance, researchers need to consider how uninsurance might “strain social relationships among community members and local institutions.” Research on the social effects of uninsurance and health policies designed to expand access to insurance is scant, but recent work deserves our attention.
The Social Costs Of Uninsurance
Lawrence Brown and Beth Stevens observe that “improving coverage and care for the uninsured is inescapably an exercise in redistribution from the haves to the have-nots.” In their study of how communities respond to the problems of expanding care and coverage to the uninsured, Brown and Stevens find that the interests of the uninsured often run into political barriers or are forced to compete with other public services, such as education, law enforcement, and safety net services. Such contentious tradeoffs can undermine residents’ feelings of connection to a community, mutual trust, and perceptions that community members can and will intervene to effectively address common social and economic problems, the authors note. Debates about expanding coverage and care for the uninsured can be even more contentious in communities where the debates intersect with historic racial and class divides. For instance, in Birmingham, Alabama, efforts to redistribute money within the safety-net system to expand access and improve the quality of primary care became highly politicized when community planners proposed diverting money away from a failing safety-net hospital that primarily served Birmingham’s African American population.
According to Stefan Timmermans and colleagues, the effects of uninsurance can also negatively affect schools in communities where local government and the private sector have failed to adequately cover the uninsured. In communities facing high levels of uninsurance, school nurses and school-based health clinics reported frequently having to deal with the consequences of delayed and unaddressed medical concerns, including mental health issues, inability to obtain vaccinations, and dental problems. “Any health requirement for school attendance,” Timmermans and colleagues note, “such as a dental visit and a physical examination for elementary school kids within 18 months of school enrollment, can become a barrier” to school attendance and student achievement.
The financial costs of uninsurance, such as high out-of-pocket expenses for health care, also contribute to increased social and economic inequality for the uninsured and their families, promoting greater class differentiation, feelings of belonging, and community disengagement. For instance, income inequality has been associated with , and a corresponding increase in mortality. My recent work with Stefan Timmermans tests this hypothesis and finds that Los Angeles residents reported lower levels of social cohesion and trust net of other individual and neighborhood factors when they live in communities with higher burdens of uninsurance (Figure 1). Since our data are from before the implementation of ACA, we also estimate how expanding health insurance benefits under ACA-like conditions would have affected communities. We find that an ACA-type expansion in access to insurance would have significantly improved social cohesion and trust in these same communities (Figure 2).
What Health Care Means To Americans
As we think about the future of ACA, we should also reflect on just what health care means to Americans. Health care is not just a commodity that we buy or an entitlement that we earn. It is also a social institution, just like family and education. Social institutions regulate norms and expectations for behavior, and go on to shape our identities, feelings of belonging and citizenship, and our sense of dignity and self-worth. Consider, for example, President Lyndon Johnson’s use of the implementation of the Medicare program in 1966 to enforce desegregation of hospitals, consistent with the Civil Rights Act. This action also shifted norms and behaviors around discrimination, changed the utilization of public space in health care settings, and broadened the meanings of citizenship.
Exclusion, too, has durable effects on social life. Among first-generation Korean Americans, one of the Asian American populations with the highest uninsured rate prior to the enactment of the ACA, exclusion from health care has not only had negative effects on individual health behaviors and health care seeking, but also on identity and feelings of belonging and citizenship. Systematic exclusion from access to health insurance has left this and other communities outside of “the political economy of hope,” invisible to government efforts to improve the lives of citizens. In such instances, excluded individuals experience a sense of devaluation relative to other US citizens. As Ruth Faden and Madison Powers explain:
In addition to the stress, powerlessness and social disrespect that have been shown to be associated with poorer health status, [uninsured individuals’] awareness of their disadvantaged social status has the potential to undermine self-respect and their sense of themselves as the moral equals of the more fortunate members of society.
Here, official policies of exclusion and disenfranchisement foster avoidance and feelings of disconnection, discouragement, and resentment from the bottom up. Ultimately, a pervasive lack of insurance in specific communities creates and reinforces a culture of “doing-without-health” among all members of that community, not just those who have negative interactions with health care as a social institution.
Moreover, political arguments for excluding marginalized populations, such as undocumented immigrants, from public insurance programs can discourage individuals from fully participating in their communities due to fear and stress. Importantly, the opposite also appears to be true: where state and local governments have made a concerted effort to integrate marginalized populations into the health care system, researchers find greater connectedness, collaboration, and feelings of a shared fate. In addition, the provision of supportive, consistent, and nonjudgmental care promotes feelings of belonging, dignity, and self-efficacy among marginalized patients. Thus, like inequalities in wealth and income, inequalities in access to health insurance and health care contribute to national and local processes of identity formation, class differentiation, and feelings of exclusion. Meanwhile, health reforms that improve access and quality may increase feelings of belonging and connectedness among previously excluded groups.
A Promise Unfulfilled
In the United States, where health care is viewed as more of a commodity than a right, the promise of expanding access to health insurance, especially publicly subsidized insurance, is relational and redistributive. The most basic role of government is to protect its citizens, especially those who are most vulnerable. In order to achieve this, those of us with insurance have to understand the issue of expanding access to insurance as our issue. Instead, the social reality of the millions of uninsured Americans—those who were uninsured prior to the passage of the ACA, those who remained uninsured well after its implementation, and those who may lose coverage as a result of a repeal—is one of exclusion and marginalization not just from health care, but from our society as a whole.
It doesn’t have to be this way. My research suggests that uninsurance strains social relationships in communities and that insurance expansion may improve social cohesion and trust. As the country considers what do with the ACA or its replacement, we ought to be attentive not only to the immediate effects that the law has had on health and costs, but also ways that more inclusive health policies can strengthen the social fabric of our communities.
Figure 1. Predicted social cohesion by percent uninsured in neighborhood, Los Angeles Family and Neighborhood Survey
Note: Reprinted with permission from McKay & Timmermans 2017
Figure 2. Estimated mean social cohesion for Los Angeles Family and Neighborhood Survey sample tracts before and after ACA implementation
Note: Reprinted with permission from McKay & Timmermans 2017