Events over the past few years have brought to center stage the inequalities that Black, Hispanic/Latino, Asian, Native American, and LGBTQ+ communities, along with other underrepresented groups, face in the United States. While these impact almost every aspect of their day-to-day worlds, the mission of Inside Edge is focused on eliminating inequities in one particular arena, one that we believe is fundamental to realizing a full life: health and healthcare.
A long-standing definition of health inequality is “health differences that are avoidable, unnecessary, and unjust.”[1] Health and healthcare inequities are often viewed through the lens of race and ethnicity, but they occur across many dimensions, including socioeconomic status, age, geography, language, gender, disability status, citizenship status, and sexual identity and orientation. Achieving health equity, defined by The Centers for Disease Control (CDC) as “the state in which everyone has fair and just opportunity to attain his or her full health potential” and no one is “disadvantaged from achieving this potential because of social position or other socially determined circumstances”[2] – across all these dimensions – has been an elusive goal.
Health inequalities recognized more than forty years ago are still evident today; in some cases, not only have they persisted, but they have widened.[3] Recent data from before the COVID-19 pandemic show that Blacks and Hispanics/Latinos fared worse compared to their White counterparts across a range of health measures, including infant mortality, pregnancy-related deaths, prevalence of chronic conditions, and overall physical and mental health status. Research also documents disparities across other factors; for example, low-income people report worse health status than higher-income individuals, and lesbian, gay, bisexual, and transgender individuals experience certain health challenges at increased rates.3
So what are the forces driving us to achieve greater health equity now?
Societal issues
The first is simply the increased understanding of—and objection to—the real impacts of these inequalities on our fellow citizens. The fact that people of color and other underrepresented groups experience higher rates of illness and death, caused by limitations in the delivery, access, and receipt of healthcare[4] is now widely discussed as an issue of social justice. Appalling statistics—like a life expectancy for non-Hispanic Black individuals that is four years lower than that of Whites or a total of 3.5 million lost life years associated with premature deaths tied to health disparities[5]—have risen in the public consciousness. And news reports now regularly document the systemic challenges behind this data, such as that clinicians tend to have more negative attitudes toward people of color, that unconscious racial bias has been shown to lead to poorer communication and lower quality of care, and that people of color less frequently received treatment in alignment with guidelines. As more Americans have become aware of the depth of the problem, more have become dissatisfied with the status quo—and importantly, with organizations who, through inaction, allow it to continue.
Economic opportunities
While the general public is largely discussing health inequities from a moral perspective, corporate and government bodies are beginning to see a need for change from a second front: our ability to thrive, economically, as a nation. Put bluntly, it is becoming increasingly clear that the level of financial impact from, what are essentially “avoidable and unnecessary” health differences, is simply not sustainable.
A healthy workforce brings with it lower unemployment, reduction in the employee skills gap, greater economic output, increased consumer spending power—all of which lift the quality of life for everyone. But higher rates of illness and death limit the overall health of the nation, with an associated lost productivity per year of $42 billion.3
It also drives up costs. A recent analysis indicated that health inequities are tied to approximately $320 billion in annual healthcare spending today—and could add up to more than $1 trillion by 2040. The cost may exceed that if unaddressed, directly impacting affordability and access, costing the average American at least $3,000 annually, up from $1,000 annually. Historically underserved communities could be even more disproportionately impacted.[6] Underrepresented groups face direct medical costs that are tied to delayed care, missed diagnoses, medical errors, and limited access to the best treatments. Because of inequitable access to care and other health-promoting resources, these populations are often sicker when they do find a source of care and incur higher medical costs.
Regulatory imperatives
Societal issues and economic opportunities can create a potential tipping point for change, but throughout business history, regulatory mandates have often been the final needed element in driving broad-based action. With respect to health equity, one such measure is the newly minted 2023 omnibus spending bill enacted at the close of 2022, which incorporates the DEPICT Act. By requiring Diversity Action Plans to be submitted to the FDA, with enrollment goals for clinical trials based on the populations affected by the disease, the law marks an important step in shifting away from the decades-old approach of testing drugs primarily on White men.
The measure adds teeth to the already existing FDA recommendations. Although representation in clinical trials has improved over the years, the most recent FDA Drug Trials Snapshot Summary Report noted that racial and ethnic representation in many of the trials for the 50 novel therapies approved by the agency in 2021 remained low.
Investigators are now encouraged to develop a strategy for reaching a broad study population on the front end, instead of either failing to do so altogether, or acting later and increasing an already lengthy and costly clinical trial process. More focus and intentionality on how to reach out to underrepresented populations will be required. This may include recognizing the importance of choosing research sites in a way that optimizes enrollment and developing on-the-ground relationships in diverse communities to raise clinical trial awareness and interest in research participation.
As the DEPICT bill sponsor Rep. Anna G. Eshoo (D-Calif.) said in an interview, “This is the first time that there is a statutory requirement for diversity in clinical trials. And FDA has made efforts to encourage this since the 1980s. But it’s always been through voluntary guidance. This changes it.”[7]
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At Inside Edge we are hopeful that, in combination, these societal, economic, and regulatory forces will, in fact, allow us to witness a decrease in health inequalities and a leap toward greater health equity among all underrepresented groups.
[1] Whitehead M. The concepts and principles of equity and health. Int J Health Serv. 1992;22:429–45.
[2] https://www.cdc.gov/healthequity/whatis
[3] https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/
[4]Racism in healthcare: a scoping review
[5]WKKellogg_Business-Case-Racial-Equity_National-Report_2018.pdf
[6]https://www2.deloitte.com/us/en/insights/industry/health-care/economic-cost-of-health-disparities.html
[7]https://news.bloomberglaw.com/pharma-and-life-sciences/diversity-in-clinical-trials-at-fda-gets-a-boost-from-new-law