Division Dispatch: Income Inequality and Health Disparities: What Money Can't Buy

            A recent headline in the American Public Health Association publication, The Nation's Health, reads, "US census: Income inequality rapidly increasing, putting health at risk."[1] The news is troubling both for what it portends and the sense of recognition of a dreadful and stubbornly static narrative. As a historian of public health, I was reminded of a poem by E. L. Foster published in 1917 entitled "The Payee," which skewered in blunt language the crushing burden of the costs of living and even dying. Noting the rising health care prices charged by doctors for "bein' born" or even "layin' cold and still," Foster concludes that, without fail, the costs are passed along and "The Consumer, patient sucker, pays the bill."

            Across the intervening decades of these two moments, I heard loudly the echoes of an unspoken term that has been the focus of my own historical research, the "health consumer." Contested, reviled, leveraged in a fight for greater health justice and equality, or neatly sliced into market niches, the rhetorical power of the health consumer remains deeply intertwined with the seemingly immutable logic of the U.S. health care system. Succinctly, it seems to inevitably follow that income inequalities increase health disparities across groups that are already overly burdened by intersecting lines of discrimination, across gender, race and ethnicity, age, and education. But how is the galling injustice of this equation so persistent? Current excellent scholarship on health inequities helps in looking forward to where we can effect change. I find that also understanding how we got here, by grappling with some of the big questions raised by historical developments in the rhetoric around the health consumer, can help us to better understand the viselike ties between health and wealth.

            The 2021 Census report rightly captures the significant impact of the current context of recent catastrophe and worrying trends, including the Covid-19 pandemic, shifts in the labor market, and the rise in inflation. Looking back to the mid- to late-twentieth century, I view these events through the lens of the push for national health insurance in the U.S. Though it has a full history with waxing and waning support, I focus in on a particular turning point moment as a starting point.

            In 1969, President Richard Nixon declared that the “spiraling costs” of medical care constituted a “crisis.” Medicare and Medicaid had been passed only four years previously, and had dramatically changed the way Americans accessed and paid for medical care. The ensuing three decades ushered in a renewed period of advocacy for health care reform with costs remaining a consistent focus. Proponents for national health insurance framed health as a human right emphasizing equitable access. Those advocating for private health insurance touted the power of the marketplace to contain costs through competition and freedom of choice. Throughout the debates, health reform advocates, insurance industry representatives, medical providers, and legislators repeatedly referred to the “health consumer” as the potential benefactor of such reforms. But this ubiquitous term remained ambiguous. Who exactly was the “health consumer”?

            The contests over the rhetoric of the health consumer as an identity, its uses and political alignments, were engaged through print, in research, in organized campaigns, and in discrete individual interactions with the health insurance industry and the health care system. Health social movements also consisted of organized groups engaging in political action for social change to address particular diseases and conditions, in addition to the very nature of how health care was provided in the U.S. Just a few examples include organizing around breast cancer, HIV/AIDS, mental health, environmental justice in the face of toxic environments, as well as advocacy around increasing access and transparency around prescription medications, medical research, and medical devices.

            The 1970s through the 1980s followed a broader shift from liberal social reform to a markedly more conservative, pro-business and anti-labor orientation. In that context, health consumers and health care advocates worked to impact health care policy in the United States at the local, state, and federal levels. Even when those efforts didn't culminate in successfully enacted legislation, their involvement helped to incorporate previously excluded voices, and realign coalitions. For example, throughout these years numerous health insurance bills were proposed, encompassing the political spectrum from fully privatized insurance to a universal health care system. As health consumer advocates organized around renewed efforts to pass legislation, they encountered shifting political alliances, while their own participation reframed the very terms of the political debate.

            Health consumer rights claims were affected by and also informed other rights claims, especially those hard-fought through other social movements including for civil rights, workers’ rights, women’s rights, gay rights, disabilities rights, mental health rights, and patients’ rights. Moving beyond binary understandings such as "patients" and "non-patients," or even the "patient/consumer," the health consumer identity blurred distinctions of inclusion and exclusion and dramatically expanded the framing of "who counts" in health social movements. Delineating between healthy and sick individuals, and expanding the definition of who is considered to be “at risk” and therefore eligible for treatment, raised questions about who is, or may become, a patient. However, healthy individuals shopping for health insurance are often referred to as “consumers,” even before they have paid a fee or filled a prescription.

            Consumer rights can provide a framework for advocating for specific rights in order to protect and empower health consumers. As articulated by President Kennedy in 1962, the four freedoms considered foundational to consumer rights ¾ to safety, to choose, to information, and to be heard ¾ have been adapted to the health care system. On the other hand, consumer rights language can concede health care to the rhetoric of free-market capitalism and economics that can further entrench historic inequities that concentrate wealth and health. Tensions also arise where health consumer rights claims intersect with an individual versus a group or coalition orientation. For an individual, such as in the instance of a health insurance policy holder contesting a denial of coverage, consumer rights may confer specific protections. However, the political and social power of the health consumer rhetoric when oriented toward a group or coalition can open avenues to effect change at the policy and legislative levels that are unavailable to the individual. In examining "Medigap" health insurance policies in Wisconsin in the late 1970s and early 1980s, certain company policies meant to avoid covering legitimate claims employed tactics of delayed communication, burdensome requests for documentation, and complex technical language. These efforts relied on the atomized perspective of the individual, in which any single incident could be considered accidental or unfortunate. In contrast, a systematic review, such as that conducted by a public law clinic committed to advocating for health consumer rights, would reveal systematic company efforts intended to minimize payouts.

            When organized health consumers have made progress and shifted the terms of the debate by incorporating consumer rights and protections, larger corporate and structural institutions have often absorbed those changes. For some, this shift in rhetoric was viewed as a positive step toward progress in more fully incorporating health consumer voices into the decision-making process and in effecting concrete reform. To others, the rhetoric of health consumer advocacy has been repurposed to bolster arguments that support preserving and even expanding a role for “free market” and for-profit principles in health care by applying consumer rights language.

            The utility and ethical implications of commodification versus rights language have consistently been at the center of these opposing views. Both also draw on overlapping histories of racism and discrimination that have engendered disparities for minoritized and oppressed or disenfranchised groups, even as civil rights and social movements have made strides toward justice and equity. In the enduring relationship between income inequality and health disparities, the tensions evoked by the health consumer seem more pronounced than ever.

            Ultimately, health social movements and the dynamic, even equivocal orientation of the “health consumer” identity may play a determinative role in how to move forward with health care policy reform that seeks to provide all Americans, regardless of income, with equitable access to wellness, rather than vying to purchase health.

[1] Yup K. "US census: Income inequality rapidly increasing, putting health at risk." The Nation's Health, November/December 2022, pg. 8.

Caitlin McMahon, PhD, MPH, is Project Director of the “Ethics of Inclusion” Study in the Division of Ethics.