Leonard C. Brahin

March 14, 2022

Healthcare represents a moment of shared vulnerability amongst all Americans. Regardless of race, class, or gender, everyone will engage in complex medical infrastructures at some point in their lives. While most Americans have some sort of health insurance, 80 million Americans lack policies that fit their needs. A person who poorly chooses a policy is not just making a mistake, they are risking their life. Thus, guaranteeing health insurance literacy is one of the chief political projects of our time. As such, this article seeks to accomplish two goals. First, it will define health literacy and review the literature surrounding the impacts of illiteracy. Second, it will defend deliberative education as an accessible mechanism to cultivate positive health outcomes. To conclude, it will present a positive vision for political advocacy in shaping healthcare in the United States. While the potential for universal healthcare may be speculative, the least we can do is find ways to ensure citizens comprehend and can meaningfully discuss the health insurance policies that they will rely on in their most vulnerable moments.

Introduction

Exiting the 2018 midterm polls, the most important issue to voters across the political spectrum was healthcare[1] [2]. According to the Kaiser Family Foundation, a non-partisan organization that has tracked the popularity of healthcare reform for over 70 years, this consensus is unsurprising: health and healthcare implicate every facet of life in America. As the only first world country without universal health care, the assortment of decisions an individual can make with regards to their health has the potential to save their life or irrevocably devastate their financial future.

Despite the relatively unanimous desire for change, healthcare policy represents one of the most controversial and confusing aspects of the American legislative agenda. When President Donald Trump declared that “no one knew healthcare could be so complicated,” he was lambasted by the media[3]. Ironically, most Americans are just as overwhelmed. The policy hurdles necessary to make the American healthcare system more accessible are daunting: between partisan gridlock, special interest groups, and the sheer magnitude of the healthcare sector, expecting sweeping reform is more fantasy than reality.

Even though 91.2% of Americans have some form of health insurance, 80 million Americans lack health insurance that fits their needs[4] [5]. Inadequate or poorly chosen insurance plans are directly correlated to higher health disparities and lower health outcomes across every demographic which makes improving health literacy one of the most important projects of our time[6]. As such, this article explores two major aspects of health literacy. After defining health insurance and giving a basic background on the market, a review of literature surrounding health insurance illiteracy will be conducted and several demographics impacted by a lack of health literacy will be highlighted. Second, a prescriptive demand for deliberative education in cultivating health literacy will be established. To conclude, this article will articulate a positive vision of collective healthcare planning at a micro and macropolitical level. 

What is Health Insurance?

Understanding the concept of health insurance is an obvious prerequisite to being literate in the policies and schemes that make up the industry. The Institute for Health Care Research and Policy at Georgetown University defines health insurance as “a mechanism for people to (1) protect themselves from the potentially extreme financial costs of medical care if they become severely ill, and (2) ensure that they have access to health care when they need it”[7]. This functions via pooling risk. Insurance companies organize a pool of healthy and sick individuals who pay a premium every month. These pools are usually composed via the workplace or by the government. They provide (either complete or partial) funding for care when a member of the pool becomes ill. Because not everyone is ill at the same time, the pool has time to grow, ensuring a payout when other individuals become sick.

The simplicity of basic health insurance is distorted by market inefficiency. The healthcare industry is experiencing a massive crisis for a multitude of reasons. For one, a small percentage of the population consumes the most healthcare services. As a result, insurers have little to no desire to cover those individuals that cost the most. Similarly, individuals do not want to buy insurance if they are relatively healthy – especially if they know they will be supporting the sickest members of the population. As a result, nearly 28.5 million citizens went without health insurance in 2017, either by their own choice or lack of affordable insurance options⁶. In addition to that adverse selection, the lack of transparency surrounding hospital pricing, predatory insurance companies, and inflationary government spending all complicate how people access insurance. These factors (and many more) make the health insurance market extremely volatile.

The Affordable Care Act, or Obamacare, sought to address many of these concerns by most notably mandating every citizen buy insurance to ensure a larger pool, demanding large businesses to sponsor health insurance for their employees, and protecting individuals with pre-existing conditions so companies could not discriminate against disabled or chronically ill patients by hiking their rates[8]. These were important steps in addressing previously unresolved market inefficiencies. However, given the lack of foreseeable market or government recourse, the private citizen is culpable in ensuring their health interests are adequately met.

Learning Literacy

Consider the following questions: 

Is a PPO the best insurance option if you have a chronic condition?

Do you know what signing up for an HSA entails?

Will your current insurance plan cover a non-emergency trip to UPMC?

Or even simpler, do you know the difference between a premium, a copay, and a deductible?

Now consider the following scenarios:

You fail to understand the benefit structure of your insurance plan and it does not cover necessary disease treatment.

Your father’s lack of basic medical knowledge means he opts for dialysis over transplants which results in years of suffering or premature death.

Your best friend is unaware of changes in the ACA enrollment date can and misses out on a CSR.

These questions and scenarios may be boring and technical but once you have cancer, leukemia, or HIV/AIDS, learning the options and choices available become a matter of life and death. While many articles effectively review these terms, this article will not. Instead, it will highlight why a lack of information about any or all these issues represents an obvious deficiency in some of the most pertinent dilemmas an individual shopping for insurance must consider.

The uniqueness of healthcare stems from the collective stake every individual has in ensuring extensive access and distribution. While advocates for single-payer plans (such as Medicare-For-All) are becoming more common, a prerequisite to meaningful policy reform is democratizing information about health insurance policies[9]. For the purpose of this article, health literacy describes the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”[10] To that end, questions of balancing cost, sustaining bankrupt rural hospitals, and protecting patients’ rights exceed the scope of any individual policy. However, without understanding the multiplicity of different plans and programs, the ability to persuasively advocate for specific policies to fix equity concerns is extremely limited. Because no single person controls the entire system, ensuring an individual has the knowledge base to make a responsible decision for themselves is the only way to guarantee meaningful access writ large.

Health literacy is a life long skill. It is bizarre that America teaches its students “about exercise, nutrition, substance abuse and sexual health” but health care and health literacy are never mentioned[11]. Every one of those topics are crucial to maintain health but none of them provide a framework or structure to navigate the most important decision an individual will make to guarantee long-term health. At the age of 26, children are removed from their parents’ insurance plan. Without having a foundational understanding of the plans and programs they will be entering, there can be no assurance of a happy and healthy life. Absent health insurance literacy, individuals are subject to make poor decisions that can result in death.

It’s Not (Just) Access, Stupid!

Skepticism with regards to the medical industry is not without justification: the legacy of malpractice via general rights violations or more particularized racial discrimination continues even today. As a result of this discrimination and stigmatization, there is a dubiousness amongst disenfranchised populations to trust health professionals. Similarly, the economic barriers faced by marginalized groups seriously limits their ability to access to any care. Negative health outcomes are an inevitability as wariness regarding physicians grow. While these concerns are certainly valid, developing health insurance literacy offers an opportunity to positively impact long-term health outcomes – and the effects of health illiteracy risks far worse results.

For years, individuals chose to self-medicate or abstain from clinical care (and in many cases still do). While some individuals pursue non-traditional medicine, self-care is also becoming increasingly popularized as an alternative to clinical medicine^{[12] [13]}. While in the abstract, taking actions that positively impact “mental, emotional, and physical health” is valuable, the unfortunate reality is that self-care is being used as an excuse for expert clinical care[14].

Low health literacy compounds every problem self-care hopes to resolve. Health illiteracy disincentives individuals from going to the doctor because the stigma around ignorance is so extreme[15]. As such, people are more than willing to risk their health than confront the embarrassment of an STD, acknowledge an unhealthy lifestyle, or change self-destructive behavior. Health literacy is the only way to make self-care successful. Personal strategies must be supplemented with knowledge about how to deal with chronic diseases, mental illness, and genetic deficiencies; that knowledge can only come from continuous contact with healthcare professionals since physicians dedicate a decade of study to understand the effects of personal decisions on health. As such, only health literacy gives individuals the skills to communicate medical concerns to a clinical caretaker and use their educated suggestions to enhance self-care strategies, thus generating a culture of trust for medical doctors[16].

Demographics and Disparities: Where Health Literacy Succeeds

Disparities in health outcomes across different demographics require new approaches. Of any group, black communities are at the largest risk of negative health outcomes stemming from health illiteracy. Black individuals suffer “diabetes, hypertension, and obesity at much higher rates than other groups.”[17] Similarly, controlling for all other factors, “rates of having poor health literacy were 20.4% in black patients…and 11.7% in whites” which makes taking steps to correct for these disparities an imperative[18].

In a similar position, the LGBTQ population is 5% more likely to go without insurance than non-queer individuals[19]. This discrepancy becomes grimmer upon realizing that transgender individuals “are almost ten times as likely as the general population to attempt suicide, with almost half of all trans people attempting suicide during their lifetime” while the queer community at large is “at a higher risk for substance use, sexually transmitted diseases (STDs), cancers, cardiovascular diseases, obesity, bullying, isolation, rejection, anxiety, depression, and suicide as compared to the general population.”[20]

Being able to articulate their needs in a medical system while still trying to adapt to new understandings of sexual identity may prove instrumental to LGBTQ individuals seeking help for untreated mental illness. Developing health literacy can give LGBTQ individuals the ability to avoid stigmatization and victimization by effectively advocating for their needs. While there is no assurance of provider sensitivity, being able to navigate the daunting behemoth of health insurance plans allows individuals to choose plans that can accommodate conditions unique to being LGBTQ in modern times.

This is not just wishful thinking. Studies concerning LGBTQ and black communities found a meaningful correlation between health literacy and positive health outcomes. In the very first study connecting health literacy to LGBTQ health outcomes “health literacy was associated with greater likelihood of coming out to the healthcare provider, reporting better overall health, and having healthcare providers who were knowledgeable about LGBT issues.”[21] For black communities, “3 studies [that] included populations across a wide age range and each used a different instrument to measure literacy” found that disparities in health care access between black and white patients were eliminated once health literacy was introduced into the equation⁶. This type of data offers a compelling case for designing mechanism of enhancing health literacy. Providing techniques that amplify health outcomes should be a top priority when such strategy is effective regardless of social or economic conditions.

Deliberator? I Hardly Knew Her!

The technical process of deliberative democracy represents one of the most resilient and effective communicative models in the history of modernity. From Aristotle until today, the persistent nature of informed opinions clashing against each other offers a defining symbol of meaningful debate. As pessimistic as some contemporary theorists may be about deliberative democracy’s potential as both an educational or persuasive mechanism, its fundamental principles provide a valuable starting point for political advocacy.

This is especially true of healthcare. Just as Congress (allegedly) deliberates about healthcare, individuals have a similar responsibility to discuss and disagree on how to navigate the messy web of private insurance. In a study comparing the effects of deliberation, participation, and education on strengthening health literacy, researchers found that deliberating about health insurance and healthcare policy was the only statistically significant variable that impacted an individual’s ability to navigate the industry[22].

Seizing the power of deliberation can have wide-reaching effects; meaningfully deliberate about health literacy has the potential to be emancipating. At first, individuals reported feeling a sense of hopelessness because if they could not even figure out what their deductible was, how could they comprehend what the orders their doctors were giving? Feelings of powerlessness when confronted with a cascade of healthcare choices represents a constant crisis between disenfranchised and privileged populations alike. Alternatively, deliberative strategies offered an empowering change of pace. It is no surprise that reading about health insurance choices alone is boring and monotonous. On the flip side, interacting with people just as invested in their health “improved self-esteem…community empowerment, and increased social capital…[which] contribute to people being healthier”[23]. Suddenly, when multiple viewpoints are interjected – and a lively debate stimulated – people want to involve themselves in difficult discussions.

Education and misinformation are disseminated at a faster rate than ever giving the increased connection individuals have via the internet. In the case of health insurance, the consequences of misleading or incorrect information reverberate. In a series of extensive interviews, researchers found that social networks had a meaningful impact on health literacy: one knowledgeable (or ignorant) person has the capacity to influence hundreds of people[24]. The most notable example of this was a national survey that found nearly 33% of people were unaware that Obamacare and the ACA were the same policy[25]. The failure to comprehend this distinction represents a profound lack of nuance in debates about healthcare policy and the necessity of informed advocacy; to only understand the healthcare debate as posturing and rhetoric is a death sentence to those who experience the consequences.

Public debates about healthcare matter. Effective deliberation about the particularities of insurance plans is the difference between the failed American Health Care Act of 2017 and the resilience of the ACA even with overwhelming Republican opposition. Absent a committed and knowledgeable public fighting for sustained healthcare infrastructure, millions would have assuredly suffered. An engaged public offers the most salient buffer against legal strategies that restrict the latitude of affordable healthcare choices.

Conclusion

Health insurance is an individual policy for an organization of individuals. Failure to recognize the collective necessity of advocating for more equitable plans that meet a multiplicity of needs represents a profound ethical shortcoming. There is a shared vulnerability that materializes in debates about health: the commonality amongst all people that everyone – no matter the race, gender, or class – will need healthcare[26].

By advocating for, learning about, and shaping the future of our health, communities can forge bonds stronger than any other connection. The ability to tangibly shape the trajectory of another person’s future – to see how one’s choices shape the world around them – fosters agency and has can influence policies and programs across the nation[27].

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[1] Kirzinger, Ashley, et al. “KFF Election Tracking Poll: Health Care in the 2018 Midterms.” The Henry J. Kaiser Family Foundation, 19 Oct. 2018, www.kff.org/health-reform/poll-finding/kff-election-tracking-poll-health-care-in-the-2018-midterms/.

[2] Dodge, Blake. “Health Care Is the Most Important Issue for Midterm Voters, Poll Says.” Bloomberg.com, Bloomberg, 18 Oct. 2018, www.bloomberg.com/news/articles/2018-10-18/health-care-most-important-issue-for-midterm-voters-poll-shows.

[3] Liptak, Kevin. “Trump: ‘Nobody Knew Health Care Could Be so Complicated’.” CNN. February 28, 2017. 2019. https://www.cnn.com/2017/02/27/politics/trump-health-care-complicated/index.html.

[4]Keith, Katie. “Two New Federal Surveys Show Stable Uninsured Rate.” The Physician Payments Sunshine Act, 13 Sept. 2018, www.healthaffairs.org/do/10.1377/hblog20180913.896261/full/.

[5] Berkman, Nancy D., et al. “Low health literacy and health outcomes: an updated systematic review.” Annals of internal medicine 155.2 (2017): 97-107.

[6] Saha, Somnath. “Improving literacy as a means to reducing health disparities.” Journal of general internal medicine 21.8 (2006): 893-895.

[7] Claxton, Gary. How private insurance works: a primer. Kaiser Commission on Medicaid and the Uninsured, 2002.

[8] “Summary of the Affordable Care Act.” The Henry J. Kaiser Family Foundation, The Henry J. Kaiser Family Foundation, 25 Apr. 2013, www.kff.org/health-reform/fact-sheet/summary-of-the-affordable-care-act/.

[9] Tang, Paul C., and Mark D. Smith. “Democratization of health care.” Jama 316.16 (2016): 1663-1664.

[10] Kindig, David A., Allison M. Panzer, and Lynn Nielsen-Bohlman, eds. Health literacy: a prescription to end confusion. National Academies Press, 2004.

[11] Winkelman, Tyler, and Martina Caldwell. “A New Prescription for K-12 Educators: Teach Kids About Health Care | Institute for Healthcare Policy & Innovation.” Inmates Are Excluded from Medicaid – Here’s Why It Makes Sense to Change That | Institute for Healthcare Policy and Innovation, 10 Nov. 2016, ihpi.umich.edu/news/new-prescription-k-12-educators-teach-kids-about-health-care

[12] Love, Shayla. “The Dark Truths Behind Our Obsession With Self-Care.” Tonic, Tonic, 11 Dec. 2018, tonic.vice.com/en_us/article/zmdwm4/the-young-and-the-uncared-for-v25n4.

[13] Schallon, Lindsay. “Self-Care Didn’t Work for My Anxiety-Medicine Did.” Glamour, Glamour Magazine, 14 Feb. 2019, www.glamour.com/story/self-care-didnt-work-for-my-anxiety-medicine-did.

[14] Michael, Raphailia. “What Self-Care Is – and What It Isn’t.” Psych Central, Psych Central.com, 8 July 2018, psychcentral.com/blog/what-self-care-is-and-what-it-isnt-2/.

[15] Batterham, R. W., M. Hawkins, P. A. Collins, R. Buchbinder, and R. H. Osborne. “Health literacy: applying current concepts to improve health services and reduce health inequalities.” Public health 132 (2016): 3-12.

[16] Becker, Gay, Rahima Jan Gates, and Edwina Newsom. “Self-care among chronically ill African Americans: culture, health disparities, and health insurance status.” American Journal of Public Health 94.12 (2004): 2066-2073.

[17] Hilton, Erica. “Why Black Women Should Care About Congress Taking Away Health Care.” The Huffington Post, TheHuffingtonPost.com, 6 June 2017, http://www.huffingtonpost.com/entry/why-black-women-should-care-about-congress-taking-away_us_5935bf8ce4b0cca4f42d9c6c.

[18] Chaudhry, Sarwat I., Jeph Herrin, Christopher Phillips, Javed Butler, Sandip Mukerjhee, Jaime Murillo, Anekwe Onwuanyi, Todd B. Seto, John Spertus, and Harlan M. Krumholz. “Racial disparities in health literacy and access to care among patients with heart failure.” Journal of cardiac failure 17, no. 2 (2011): 122-127.

[19] Gates, Gary. “In U.S., LGBT More Likely Than Non-LGBT to Be Uninsured.” Gallup.com, 26 Aug. 2014, news.gallup.com/poll/175445/lgbt-likely-non-lgbt-uninsured.aspx.

[20] Freitag, Thomas. “Addressing Current Issues in Healthcare for Transgender Individuals.” Forbes and Fifth 13 (January 2019).

[21] Eliason, Michele J., Predair Robinson, and Kimberly Balsam. “Development of an LGB-specific health literacy scale.” Health communication 33.12 (2018): 1531-1538.

[22] Nabatchi, Tina, Suyeon Jo, and Alvaro Salas. “Initial Phases of a Randomized Study of Public Deliberation about Diagnostic Error: An Analysis of the 2016 Healthcare Consumer Event.” (2016).

[23] Settle, Catherine. “Engaging citizens in deliberations for health policy development: Democratising health policy?.” 2015 European Consortium for Political Research [ECPR] General Conference. European Consortium for Political Research [ECPR] General Conference, 2015.

[24] Edwards, Michelle, et al. “‘Distributed health literacy’: longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long‐term health condition.” Health Expectations 18.5 (2015): 1180-1193.

[25] Dropp, Kyle, and Brendan Nyhan. “One-Third Don’t Know Obamacare and Affordable Care Act Are the Same.” The New York Times, The New York Times, 7 Feb. 2017, http://www.nytimes.com/2017/02/07/upshot/one-third-dont-know-obamacare-and-affordable-care-act-are-the-same.html.

[26] Knight, Amber. “Disability as vulnerability: Redistributing precariousness in democratic ways.” The Journal of Politics 76.1 (2013): 15-26.

[27] Ruger, Jennifer Prah. “Health, health care, and incompletely theorized agreements: a normative theory of health policy decision making.” Journal of health politics, policy and law 32.1 (2007): 51-87.

Thank you to Dr. Osea Giuntella of the University of Pittsburgh’s Department of Economics for providing insightful feedback.