A young man has been prescribed medication for heart irregularities, and the instructions mandate him to take the pills “once a day.” In Spanish, the word once translates into the number eleven. The man, whose first language is Spanish, takes eleven pills per day, putting his life at serious risk. This highly circulated story among medical professionals represents an issue at the heart of healthcare in the United States—health literacy.

As defined in the Affordable Care Act (ACA), health literacy is “the degree to which an individual has the capacity to obtain, communicate, process, and understand health information and services in order to make appropriate health decisions.” While all demographics across the country are impacted by this issue that affects nearly nine in ten U.S. adults, it is disproportionately prevalent in minority, low-income, and immigrant communities.

Who Is Disproportionately Affected?

The most recent data available found that when broken down by race and ethnicity, white adults have significantly higher health literacy ratings than black, Hispanic, and American-Indian adults. Reports have also shown that immigrant communities have lower literacy and numeracy scores than their U.S.-born counterparts.

From a socioeconomic standpoint, American adults living below the federal poverty threshold report lower levels of health literacy. According to a report by the Department of Education, this is directly reflected in the type of health care coverage an individual has. Those enrolled in Medicare and Medicaid have more than double the percentage of individuals with below basic health literacy ratings than any other coverage. This is especially pertinent considering how the ACA expanded access to Medicaid for millions of Americans since its implementation.

Adverse Health Outcomes

Not only does health literacy impact a huge segment of the population, but decades of research have shown that it also dips into many sectors, with far-reaching health and economic repercussions. As minority, low-income, and immigrant populations are more prone to low levels of health literacy, they often experience the brunt of these adverse health outcomes.

Reports reveal lower rates of health literacy are linked to worse management of chronic conditions, lower scores of self-reported health, and less use of key preventative services. Many readmission rates and avoidable emergency visits have also been attributed to low health literacy levels. Though these may appear to be benchmarks measuring individual health, they have been cited as signposts for the success of the health care and economic systems as a whole.

Low health literacy rates have been referred to as a source of economic inefficiency in the healthcare system for patients, providers, and even taxpayers. Studies have approximated that medical costs related to the topic account for between $106–236 billion annually, or between 7–17 percent of nationwide health care expenditures. Taking future costs into account, experts predict the real, present day cost to be closer to anywhere between $1.6–3.6 trillion.

Barriers to Access to Care

There has also been a visible impact stemming from health literacy on individuals’ ability to access care. Since the implementation of the ACA, an array of quantitative and qualitative data have been released that portray the barriers, especially on the online marketplace, in gaining access to care.

In some instances, the language used on the federal online marketplace exceeds the reading levels of its users. A report found that while average Medicaid renewal applications range between eleventh and eighteenth grade reading and comprehension levels, recommended levels sit between fifth and sixth grade.

Language comprehension is not the only obstacle to accessing care, with professionals identifying comparison benefits of various insurance plans as a confusing task.

Language comprehension is not the only obstacle to accessing care, with professionals identifying comparison benefits of various insurance plans as a confusing task. This has been commonly cited as a reason behind individuals choosing plans that may not be best tailored for them.

In a report detailing ways to improve the ACA by Century Foundation fellow Harold Pollack, he refers to the overall human experience in interacting with the online marketplace as “mediocre.” Pollack writes that the many shortcomings of the marketplace leads “consumers [to] often err in choosing marketplace health plans.”

Improving Health Literacy in the ACA

One of the primary objectives of the ACA, expanding access to and use of care, could be further realized if higher proportions of the population have proficient health literacy levels, which could be achieved by increasing the scope by which the ACA incorporates this issue.

Though the federal health reform law identifies and attempts to address some of the issues under the large umbrella of health literacy, the limited resources and lack of explicit programmatic measures may not sufficiently combat the multi-layered topic.

Of the more than 20,000 pages of regulations associated with the ACA, the legislation directly mentions the term health literacy four times.

Table 1. Direct Mentions of Health Literacy in the ACA
Sec. 3501 Agency for Research and Health care Quality produce research and make it “available to the public through multiple media and appropriate formats to reflect the varying needs of health care providers and consumers and diverse levels of health literacy.”
Sec. 3506 Amend Public Health Service Act, “program to update patient decision aids to assist healthcare providers and patients.”
Sec. 3507 Provision determines whether there should be changes and additional information provided on drug labeling, print advertising
Sec. 5301  Amends Title VII of Public Health Service Act, makes training grants available to primary medical specialties that “provide training in enhanced communication with patients … and in cultural competence and health literacy.”
Source: Institute of Medicine, Health Literacy Roundtable

A report highlighted that only one of the four provisions that explicitly names health literacy—Section 5301—incorporates programmatic measures. This lack of health-literacy specific programming is especially troubling considering the shown benefits of programs in mitigating low levels of health literacy. The correlation between general education and health literacy could also be better addressed by programmatic measures, as education is programmatic in nature.

While the inclusion of this provision is a step in the right direction, it is geared toward training medical professionals rather than the general public. The recent launch of the Children’s Hospital of Philadelphia Community Health and Literacy Center, a collaboration between public and private sectors, is a strong example of an institution devoted to health literacy that prioritizes programmatic means aimed toward patients to achieve its mission.

The ACA could implement more provisions that incorporate specialized programs targeted toward low-income, minority, and immigrant communities who have been identified as having low rates of health literacy. These provisions could entail detailed guidelines for educators or medical professionals to hold free training workshops on the pitfalls—such as not utilizing preventative care—of health literacy in local communities. Alternatively, more general financial incentives could be provided for health care or medical organizations to hold programs that address health literacy.

The sole programmatic-based section devoted to health literacy in the ACA also allocated a mere $125 million toward the initiatives over a four year span, resulting in approximately $40 million annually distributed to grants and scholarships throughout the country. Given that the U.S. spends an average of $15 billion per year on Graduate Medical Education Programs, this sum may not be enough to make a dent in health literacy training.

Not only could increased funding and provisions directly impact populations with low health literacy rates through education, but it could also be employed to enhance the online marketplace.

Experts in health literacy have established algorithms and compiled a number of methods, such as implementing programs that run usability tests for low-income communities attempting to enroll on the exchange, that are ready to be incorporated into the online marketplace. Though this piece barely scrapes the wide-ranging issue of health literacy, there are a variety of resources available, from the Health Literacy RoundTable to the Agency for Healthcare Research and Quality, that have been entrenched in the many topics of health literacy for decades. Employing their expertise in the next stages of legislative action slated to address health literacy could provide the greatest opportunity to reduce the prevalence of health literacy.

As the ACA continues to expand access to health care coverage to millions of Americans, health literacy remains at the core of whether these individuals will be able to obtain and utilize the coverage they receive.

As the ACA continues to expand access to health care coverage to millions of Americans, health literacy remains at the core of whether these individuals will be able to obtain and utilize the coverage they receive. Health literacy has been identified as a primary issue in public health for the last two decades, and federal legislation may want to take a page from the proliferation of public and private organizations increasingly devoting resources to reducing low literacy rates.