INTRODUCTION

As described throughout this report, racial, ethnic, and tribal health inequities are created and sustained by factors both inside and outside of the health care system. However, health is strongly tied to the health care system—a healthy population requires access to high-quality, comprehensive, affordable, timely, respectful, and culturally appropriate health care. The health care system serves as an important setting for delivery of care and treatment, individual- and population-level prevention and health improvement interventions, and clinical research and as an important source of data needed to measure health outcomes and health inequities. Some health inequities are created and sustained in the health care system—these are often referred to as “health care inequities,” due to their direct tie to the health care system, as distinguished from “health inequities,” which describe the outcomes related to factors both in and outside the system. This distinction becomes important when focusing on the federal health care policies that contribute to health and health care inequities to identify policy-level intervention points.

This chapter summarizes the role of federal policy across the U.S. health care system, followed by an overview of health inequities within (created and propagated by) it. It also

• reviews a selection of federal health care policies that either contribute to racial, ethnic, and tribal health inequities or advance equity;
• is organized around access, quality, and inclusion; and
• concludes with a section outlining impacts of the system on a few specific populations that were selected to provide a broadly illustrative, but not comprehensive or exhaustive, perspective on the interactions between populations and health care policies and systems.

Numerous policies could be reviewed along with their effects on every racially and ethnically minoritized population and in different geographic settings (e.g., urban, rural, U.S. territory); see Chapter 1 for an overview of the committee's process for selecting policies. As it has done in other chapters, however, the committee identified a limited set of salient examples that contribute to or promote racial, ethnic, and tribal health inequities in a number of different areas (e.g., Medicaid and the Children's Health Insurance Program [CHIP] and policies and practices related to health literacy and language access, value-based payment, inclusion in clinical trials and the workforce, the Indian Health Service [IHS], and maternal, territorial, and immigrant health). This approach does not mean that policies that were not reviewed, or not discussed in detail, are less important—rather, the goal of this and other chapters is to illustrate the different ways federal policies contribute to inequities and can further health equity.

FEDERAL HEALTH CARE POLICY OVERVIEW

Federal policies drive all aspects of the U.S. health care system. Congress legislates many aspects of health care finance, delivery, access, and quality; the Department of Health and Human Services (HHS) is the principal executive agency serving as the primary regulator/administrator of these laws, and it includes several subagencies responsible for specific policies and programs. Due to the substantial role of the federal government in health care policy, HHS accounts for the largest percent of federal budget resources at nearly 25 percent, largely because of public health insurance programs (CBPP, 2022). HHS has agencies that finance and regulate public insurance programs (Centers for Medicare & Medicaid Services [CMS]), health care access (Health Resources and Services Administration [HRSA]), medical devices, pharmaceuticals, and clinical trials (Food and Drug Administration [FDA]), public health (Centers for Disease Control and Prevention [CDC]), research (National Institutes of Health [NIH] and Office for Human Research Protections), and the IHS, among others related to health and health care.

HHS also has the Office of Minority Health (OMH), which was created in 1986, following the Secretary's Task Force Report on Black and Minority Health (also known as the “Heckler report” (Heckler, 1985)), the first federal report to acknowledge racial and ethnic health disparities. OMH is intended to “improve the health of racial and ethnic minority populations through the development of health policies and programs that will help eliminate health disparities” (OMH, 2019). In 2010, as part of the Patient Protection and Affordable Care Act (ACA)¹, Offices of Minority Health were established in six agencies at HHS (Agency for Healthcare Research and Quality [AHRQ], CDC, CMS, FDA, HRSA, and Substance Abuse and Mental Health Services Administration), which, in partnership with the NIH National Institute on Minority Health and Health Disparities, are responsible for leading and coordinating activities across the agency. However, as noted in the HHS Equity Action Plan, “HHS currently lacks the data and equity assessment capacity to consistently identify and address inequities in health and human services” (HHS, 2022c, p. 12). HHS' lack of capacity, ability to coordinate, and limited authority contributes to racial and ethnic health inequities.

In the United States, access to health care is largely dependent on insurance coverage; federal policy drives that and many other aspects of health care, including how it is delivered, the data collected, the health care workforce, use of technology, and innovation; examples of such policies include the Emergency Medical Treatment and Active Labor Act,² the Health Information Technology for Economic and Clinical Health Act,³ and FDA regulation of the process of developing, testing, and marketing pharmaceuticals. Federal policies have created the health care safety net, designating medically underserved areas and health professional shortage areas, and authorizing federally qualified health centers, critical access hospitals, and other safety net settings in these areas, many of which serve a disproportionate share of racially and ethnically minoritized populations.

HEALTH CARE ACCESS AND HEALTH CARE INEQUITY

Health care access and quality, one of the five broad categories of social determinants of health (SDOH), is directly tied to health outcomes (AHRQ, 2022; HHS, n.d.-b; University of Wisconsin Population Health Institute, 2023). Understanding different domains of access and quality can help clarify the impact federal policies have on health care inequities and identify opportunities to reduce these.

Health Insurance Coverage

Health insurance coverage is critical for accessing health care in the United States; it is a combination of insurance segments, all of which are a result of federal policy. Those with insurance have dramatically lower financial barriers to care, and providers are more likely to provide care to those with health insurance (Glied et al., 2020; Tolbert et al., 2022). Insurance is provided through private insurance markets and the public sector. The private sector includes employer-sponsored, individual, and other nongovernmental plans. Public-sector insurance includes Medicare, Medicaid, (CHIP), TRICARE, and several other programs, as detailed below. According to the Census Bureau, employer-sponsored health insurance covered 54.3 percent, Medicare 18.4 percent, and Medicaid 18.9 percent of the U.S. population in 2021 (Keisler-Starkey and Bunch, 2022) (see Figure 5-1). The racial distribution for the under 65 population varies by insurance segment (see Figures 5-2 and 5-3). About three-quarters of White and Asian nonelderly adults ages 19–64 have employer or other private coverage, as do about 60 percent of Native Hawaiian and Pacific Islander (NHPI) and Black people, but about half of Hispanic and 42 percent of American Indian and Alaska Native (AIAN) adults do (Artiga et al., 2022b). Gaps in rates of public coverage and uninsured are reversed: they are relatively lower for White and Asian adults. The gaps in uninsured are most consequential, with 25 percent of Hispanic and AIAN adults uninsured compared to 8 percent of White adults. Fourteen percent of Black adults and 12 percent of NHPI adults are uninsured (Artiga et al., 2022b). Similar trends by race and ethnicity are seen among children ages 0–18, but higher percentages in general have Medicaid and other public insurance and lower percentages are uninsured than adults. More than half of Black, AIAN, Hispanic, and NHPI children have Medicaid or other public insurance. Uninsured rates are highest among AIAN (13 percent), Hispanic (9 percent), and NHPI (7 percent) children (Artiga et al., 2022b). This system of insurance as the gateway to services is derived directly from employment status, age, income, and/or other social factors. This results in many individuals who are uninsured or underinsured and contributes to inequities in access that disproportionately affect Black, Latino, AIAN, NHPI, and other minoritized populations.

FIGURE 5-1

Percentage of people by type of health insurance coverage, 2021. NOTES: The estimates by type of coverage are not mutually exclusive; people can have more than one type during the year. Information on confidentiality protection, sampling error, nonsampling (more...)

FIGURE 5-2

Health care coverage of children by race and ethnicity, 2019 and 2021 (ages 0–18). NOTES: Persons of Hispanic origin may be of any race but are categorized as Hispanic for this analysis; other groups are non-Hispanic. Totals may not sum to 100 (more...)

FIGURE 5-3

Health care coverage of nonelderly population by race and ethnicity, 2019 and 2021 (ages 19–64). NOTES: Persons of Hispanic origin may be of any race but are categorized as Hispanic for this analysis; other groups are non-Hispanic. Totals may (more...)

Health insurance coverage is highly fragmented largely because the system was designed around private employer-sponsored health insurance with federal programs developed to address groups not covered by their employers. Employer-sponsored health insurance is supported by a federal tax exclusion that has been in place since the 1940s (Carpenter, 2019); these insured do not pay federal (or state) taxes for this part of their compensation. This policy creates tax inequity, as it benefits those with employment and provides greater subsidies to those with higher incomes (CRS, 2011). The fiscal year (FY) 2023 income tax expenditure for the exclusion of employer contributions for medical insurance premiums and care is estimated at more than $200 billion (Department of the Treasury, 2023; Tax Policy Center, 2020). Nongroup insurance covers a relatively small segment of the population, and these individuals do not benefit from this tax exclusion. ACA added subsidies scaled by income and regulations to make it easier for those outside of the employer-based system and other public programs to obtain insurance. This nongroup private market has expanded since 2014, when these rules went into effect. In addition to creating subsidies for individuals and businesses to purchase private insurance market products, federal policy also regulates many other aspects of the private market, such as mandating coverage for certain types of services and regulating industry policies and practices. For example, the Mental Health Parity and Addiction Equity Act⁶ required private plans that cover treatment for behavioral health conditions to do so in the same way as for other medical conditions. The Employee Retirement Income Security Act⁷ sets minimum standards for employer-sponsored private health insurance and retirement plans. ACA mandated that all public and private plans cover preventive services at no cost to the patient.⁸

Government-sponsored health programs include Medicare, Medicaid and CHIP, military health programs, such as TRICARE and the Veterans Health Administration (VHA), IHS, and the Native Hawaiian Health Care Systems. Medicare has eligibility based on age (65 years and older), some disabilities and conditions, and other factors, with over 63 million enrolled in 2021 (CMS, 2021a). Medicaid is the federal and state program for eligible low-income children, adults, pregnant people, elderly adults, and people with disabilities (Medicaid.gov, n.d.-b). More than 86 million people were enrolled in Medicaid and CHIP in 2021, including 35.9 percent of children (Keisler-Starkey and Bunch, 2022; Medicaid.gov, 2022; Mykyta et al., 2022). The national health expenditures in 2021 were $900 billion for Medicare and $734 billion for Medicaid ($513 billion federal, $221 billion state and local) (CMS, 2023d). The federal government pays for more than one-third of total national health expenditures through Medicare and Medicaid, providing insurance coverage to approximately one-third of the population (CMS, 2023d; Keisler-Starkey and Bunch, 2022). In 2014, through ACA, federal law allowed⁹ states to expand their Medicaid eligibility criteria to cover all adults with incomes below 138 percent of the federal poverty level. Medicaid and CHIP enrollment also increased after 2020 in part because of the continuous enrollment provision of the Families First Coronavirus Response Act¹⁰ (Tolbert and Ammula, 2023).

TRICARE provides insurance for 9.6 million active-duty and retired service members, members of the National Guard and Reserve, and eligible family; it costs about $50 billion annually (DHA, 2022; Schaettle et al., 2021). VHA is the country's largest integrated health care system, serving 9 million veterans annually; Department of Veterans Affairs (VA) medical services receive about $120 billion in discretionary funding (Shane, 2022; VA, 2022; The White House, 2023). IHS is the health care system for AIAN people from federally recognized tribes, serving around 2.7 million persons, with a FY2022 budget of $6.8 billion (ASPE, 2022a). The Native Hawaiian Health Care Improvement Act¹¹ established Papa Ola Lōkahi and five Native Hawaiian Health Care Systems that serve Native Hawaiians in Hawaii and provide culturally responsive, community-based health promotion, disease prevention, and primary care services; the majority of funding is federal grant money from HRSA (HRSA, 2023; Hui No Ke Ola Pono, n.d.). The program received $22 million in 2022 (Hiraishi, 2022; Office of Senator Schatz, 2022). See sections later in this chapter for more information on Medicaid and IHS.

Even with all of these programs, 27.2 million people, or about 8 percent of the population, were uninsured in 2021; 5 percent of children were uninsured (Keisler-Starkey and Bunch, 2022). Although disparities in rates of uninsured between racial and ethnic groups have declined as a result of ACA expansions, gaps remain (Artiga et al., 2022b; Keisler-Starkey and Bunch, 2022; Lee et al., 2021). Racially and ethnically minoritized and low-income people, including children, continue to be more likely be uninsured. More specifically, individuals living in the 11¹² states that have not expanded Medicaid were two times more likely to be uninsured (Artiga et al., 2022b; KFF, 2023c; Lee et al., 2021; Tolbert et al., 2022; Yearby et al., 2022). Yet it is not just a gap in federal and state policy; it is also a function of implementation, including availability and affordability of health insurance options, which affect an individual's decision to enroll. Approximately 63 percent of these 27 million uninsured individuals were eligible for some type of subsidized insurance coverage (see Figure 5-4).

FIGURE 5-4

Eligibility for subsidized insurance coverage among nonelderly uninsured, 2021. NOTES: The graph shows the share of uninsured Americans under age 65 who are already eligible for subsidized insurance via Medicaid or ACA tax credits to purchase coverage (more...)

MEDICAID

Given the high cost of health care, affordability is an important element of access, and health insurance is the primary policy lever. The committee focused on Medicaid (including Medicaid structure, eligibility, enrollment and administrative burden, and innovation) because Medicaid is a major source of health care coverage for people with low income, racially and ethnically minoritized populations, people with disabilities, and other underserved groups. Medicaid and CHIP are also critical sources of insurance for children; more than one-third of U.S. children are covered by Medicaid or CHIP (Keisler-Starkey and Bunch, 2022; Mykyta et al., 2022).

Medicaid, enacted in 1965 alongside Medicare, was designed to provide health insurance for individuals with limited income; that focus makes it a key policy lever for addressing health equity. An analysis by Kaiser Family Foundation found more than half of nonelderly enrollees identify as Black, Hispanic, Asian, or another minoritized race or ethnicity (KFF, n.d.-e). As a more specific example, Medicaid paid for 41 percent of U.S. births in 2021, including 58 and 64 percent of births to Latina and Black women, respectively (Osterman et al., 2023). Medicaid is a critically important program and has improved health access and some health outcomes and reduced racial inequities, financial burden, and mortality rates (Baicker et al., 2013; Flores et al., 2017; Guth and Artiga, 2022; Lee et al., 2021; Miller et al., 2021; NASEM, 2017b).

The Oregon Health Insurance Experiment was a significant study of the effect of expanding health insurance through a Medicaid lottery. Oregon initiated an experimental limited expansion of its Medicaid program in 2008 by filling spots on a waiting list with a lottery system. About 90,000 adults signed up for the waiting list; approximately one-third of these names were drawn for 10,000 spots. The limited number of spots created a natural opportunity to randomize Medicaid coverage to understand its effects on health care use and outcomes, financial hardship, and well-being in the first 1–2 years of coverage (NBER, n.d.-a). Research found that it resulted in significantly more outpatient and emergency department visits, hospitalizations, and prescriptions (Baicker et al., 2017; Finkelstein et al., 2016). It also reduced prevalence of depression but did not significantly change cardiovascular risk or cholesterol and blood pressure levels (Baicker et al., 2013, 2018; NBER, n.d.-b). The likelihood of experiencing a catastrophic medical expenditure dramatically reduced and medical debt was significantly lowered (Baicker et al., 2013; Finkelstein et al., 2012; NBER, n.d.-b). Additionally, several studies have examined changes in health disparities resulting from the ACA Medicaid expansions that were not implemented in all states (Donohue et al., 2022). Lee and colleagues (2021) found “Medicaid expansion was associated with significant decreases in uninsured rates and increases in Medicaid coverage among all racial and ethnic groups.” Decreases in racial and ethnic disparities in delayed and unmet need for care were also observed. See Box 5-1 for information on the recent expansions of public health insurance and benefits to children.

BOX 5-1

Benefits of Recent Expansions in Children’s Health Insurance Coverage.

However, Medicaid-relevant inequities remain. Within Medicaid, one cross-sectional study found Black enrollees generated lower spending and used fewer primary care and recommended care services than White enrollees but had more emergency department visits (Wallace et al., 2022). This important study suggests that additional steps to ensure equity are needed within this critical program that reduces health inequity in important ways (Wallace et al., 2022). The following sections highlight those program aspects that contribute to inequities and identify how improvements to Medicaid can further advance health equity.

Medicaid Enrollment and Administrative Burden

Administrative burden as a barrier to Medicaid and CHIP participation is not a new problem; it has been recognized as an issue for decades (Camillo, 2021; Flores et al., 2005) and is not unique to Medicaid. In 2021, the Office of Management and Budget found that administrative burden exacerbates inequity, leading to disproportionate underuse and unequal access costs (OMB, 2021). It includes activities such as excessive paperwork and documentation for initial and continued enrollment, frequent “proof of eligibility” requirements, time and method for enrollment (for example, websites with limited enrollment hours, state enrollment agency working hours, language barriers), transportation to enrollment sites, Internet access, face-to-face interviews, and pending decisions and long waits (Flores et al., 2005; Fox et al., 2020). Frequent renewal processes, eligibility checks, and documentation requirements can result in temporary loss of coverage, causing people to be disenrolled and then re-enroll within a short period, or “churn” (loss of coverage can also occur because of income fluctuations, for example, that result in Medicaid ineligibility). In 2018, it was estimated that approximately 10 percent of enrollees experienced churn, defined by a gap in coverage for less than 1 year (Corallo et al., 2021). Churn affects children as well; one study found churn rates increased more than two times following annual renewal and increased the most among Hispanic children (Williams et al., 2022). Furthermore, the burden of collecting proof of income documentation and submitting it to the state generally falls on the applicant/enrollee. Challenges with providing required documentation results in delays in eligibility determinations and terminated coverage. Administrative burden in Medicaid is costly to individuals, including learning costs associated with navigating eligibility and application processes, psychological costs associated with stigma and stress, and compliance costs associated with time and effort required to fill out forms, collect required documents, and complete application and renewal processes (Wikle et al., 2022).

During the COVID-19 public health emergency, states were required to ensure continuous Medicaid enrollment and were compensated with temporarily increased FMAP rates (Tolbert and Ammula, 2023). In December 2022, Congress separated that requirement from the public emergency; as part of the Consolidated Appropriations Act of 2023, continuous enrollment ended on March 31, 2023, potentially leaving a sizable number of former recipients without health care coverage and necessitating alternative insurance options, such as employer-sponsored insurance or marketplace coverage, for those determined to be ineligible for Medicaid or CHIP (ASPE, 2022b; Tolbert and Ammula, 2023). One major impact of this decision is the potential increase in the number of individuals who are no longer with Medicaid or health insurance and the inequitable impact on children, those with limited English proficiency, and people with disabilities, all of whom are more impacted by the administrative burden (ASPE, 2022b; Tolbert and Ammula, 2023). Resuming eligibility determinations places coverage for eligible individuals and families at risk due to administrative challenges that must be met to retain coverage. Although the continuous enrollment policy change was temporary and necessitated by the pandemic, its end has serious implications for health equity. Medicaid enrollment increased by about 20 percent in the first 2 years of the pandemic (Tolbert and Ammula, 2023), largely attributed to that policy. Minoritized populations are disproportionately affected by the pandemic and also at higher risk of losing Medicaid coverage once the continuous enrollment requirement ends.

A range of solutions to address the problem of administrative burden have been tested and evaluated. Reductions in administrative burden are associated with increased Medicaid enrollment (Baicker et al., 2023; Fox et al., 2020). Even small steps, such as outreach, enrollment reminders, and autoenrollment and retention practices, can have significant positive effects (Domurat et al., 2021; McIntyre et al., 2021; Shepard and Wagner, 2022; Wright et al., 2017). Continuous enrollment is associated with better cancer survival rates, increased postpartum care visits, and improved child health outcomes (Brantley and Ku, 2021; Dawes et al., 2014; Desisto et al., 2020). Parent mentors (parents of at least one child covered by Medicaid or CHIP for at least 1 year who underwent additional training about the two programs and application processes) have also been found to be cost-effective and significantly more effective than traditional outreach and enrollment methods in insuring children, achieving faster coverage, and renewing coverage among Black and Latino/a study participants (Flores et al., 2016, 2018). Parental satisfaction was higher and children were less likely to have no primary care provider and unmet medical or dental needs if they had a parent mentor. Children who benefited from the parent mentor program had higher coverage rates 2 years after the intervention ended (Flores et al., 2016, 2018). Box 5-2 describes presumptive eligibility for pregnancy, an example of a policy option that reduces administrative burden. Box 5-3 describes the Medicaid inmate exclusion policy, which contributes to administrative burden for a specific vulnerable population. Both examples highlight flexibility in Medicaid policy implementation.

BOX 5-2

Presumptive Eligibility for Pregnancy.

BOX 5-3

Medicaid Inmate Exclusion Policy.

Finding: Non-expansion Medicaid states have the highest uninsured rates and disproportionately large racially and ethnically minoritized populations compared with states that have expanded Medicaid.

Conclusion 5-1: Medicaid and the Children's Health Insurance Program are the most important federal policies that address the racial and ethnic inequities in access to affordable health care. The Medicaid expansions in eligibility incentivized in the 2010 Affordable Care Act have increased insurance coverage, improved health outcomes, and reduced racial and ethnic health inequities in access to preventive services, delayed care, and unmet health care needs.

Strong evidence suggests that Medicaid expansion under ACA substantially decreased racial and ethnic health inequities by dramatically increasing insurance coverage and decreasing uninsured rates, improving access to care, preventive care rates, and treatment, and decreasing rates of unmet need across racially and ethnically minoritized groups. Medicaid expansion also decreased inequities in preventable hospitalizations and emergency department visits and improved treatment and outcomes for cancer, diabetes, maternal and child health, and behavioral health (Crocker et al., 2019; Gasoyan et al., 2022; Moriya and Chakravarty, 2023; Solomon, 2021; Steenland and Wherry, 2023).

Despite this evidence, 11 states have declined expansion (South Dakota adopted expansion in 2022, with planned implementation in July 2023). If all of these states expanded coverage to adults with incomes up to 138 percent of the federal poverty level, an estimated 3.8 million additional nonelderly adults would be eligible, increasing eligible Black and Hispanic adults fivefold and sixfold, respectively (Rudich et al., 2022). Box 5-4 describes another way to expand Medicaid coverage for a vulnerable population, postpartum people.

BOX 5-4

Medicaid Postpartum Coverage.

Conclusion 5-2: Among those eligible for Medicaid under the current federal eligibility criteria, racial and ethnic inequities in enrollment and participation remain. While acknowledging the important role of states, the federal government can play a role in addressing these issues, such as by reducing administrative burden and examining the racial and ethnic health equity implications of policies that exclude specific populations, such as immigrants and people involved with the criminal legal system.

Summary

This section reviewed how Medicaid has both hindered and advanced racial and ethnic health equity and additional tools states can use. Other aspects of Medicaid policy promote inequities in other areas, such as Medicaid estate recovery (see Box 5-5). However, addressing issues such as eligibility and implementation (including administrative burden) can help Medicaid meet its full potential to advance health equity.

BOX 5-5

Medicaid Estate Recovery.

HEALTH LITERACY AND LANGUAGE ACCESS

Access to health care is multifaceted, and health literacy and language access are key components of successfully accessing care (IOM, 2004, 2015; NASEM, 2017c, 2020, 2021a, 2023a,b,c).

The health care system is complex and challenging for most to understand. For millions of consumers from diverse racial and ethnic backgrounds, the pervasive lack of forms, descriptions of insurance coverage and benefits, health education materials, and instructions for hospital discharge and prescription medications in plain language, languages in addition to English (and sometime Spanish), and alternative formats are a stark example of how federal policies can perpetuate racial inequities. On one hand, HHS recognizes the importance of health literacy in all health-related communications and has funded and made available vital resources on addressing health literacy and numeracy.²¹ For example, HHS includes language access as a major focus of its 2022 department-wide equity action plan (see Box 5-6), and its Office of Disease Prevention and Health Promotion issued a National Action Plan to Improve Health Literacy in 2010 (OASH, 2010). In addition, the CMS Framework for Health Equity 2022–2032 identifies improved language access, health literacy, and culturally appropriate care as a key pillar to improve health equity (CMS, 2022a). CDC has numerous resources on addressing health literacy and numeracy (CDC, 2022c) and its own Action Plan on Health Literacy (CDC, 2022a). AHRQ has developed a Health Literacy Universal Precautions Toolkit that compiles best practices for addressing health literacy (AHRQ, n.d.). The National Academies have also published a significant body of research and numerous recommendations on how to create systems of care and health care organizations that are responsive to health literacy and numeracy (Brach et al., 2012; Hudson and Rikard, 2018; IOM, 2004; Logan et al., 2015; NASEM, n.d.; Simon et al., 2020). Moreover, the HHS OMH National Standards for Culturally and Linguistically Appropriate Services (CLAS) highlight the importance of language access, with 4 of the 15 standards for health care organizations focused on ensuring language access (standards 5–8) to improve quality and advance health equity (HHS, n.d.-e; OMH, 2023):

BOX 5-6

HHS Equity Action Plan: Language Access.

• “Offer language assistance to individuals who have limited English proficiency and/or other communication needs, at no cost to them, to facilitate timely access to all health care and services.
• Inform all individuals of the availability of language assistance services clearly and in their preferred language, verbally and in writing.
• Ensure the competence of individuals providing language assistance, recognizing that the use of untrained individuals and/or minors as interpreters should be avoided.
• Provide easy-to-understand print and multimedia materials and signage in the languages commonly used by the populations in the service area.”

OMH has developed free, online trainings on implementing the CLAS standards and commissioned RAND to compile resources for evaluating effective implementation (HHS, n.d.-a; Williams et al., 2018).

The HHS Office for Civil Rights (OCR) is charged with enforcing Title VI of the Civil Rights Act of 1964 and Section 1557 of ACA, requiring meaningful access to federally funded health care programs and services for individuals with limited English proficiency (HHS, 2020, 2023b). However, OCR's enforcement capabilities and effectiveness are limited by its resources, competing enforcement priorities, such as protecting the privacy of personal health information, and lack of accessible complaint processes (HHS, 2013a; Lo, 2011; Office for Civil Rights, 2013; U.S. Commission on Civil Rights, 2019). Increasing OCR staffing and enforcement capabilities, community education about the right to language assistance services, and availability and training of health care interpreters are potential approaches to advancing health equity (Chen et al., 2007). Other changes in federal policies, such as expanding reimbursement for health care interpreters and other language assistance services through Medicare and Medicaid, would also increase language access (Khanijou, 2005; Office of Inspector General, 2010a,b). Furthermore, the Biden Administration has proposed restoring the original regulation implementing the protections against discrimination in ACA Section 1557 under the Obama Administration, rescinding their rollback by the Trump Administration (HHS, 2023b). HHS also has developed a Language Access Plan in compliance with Executive Order 13166²² Improving Access to Services for Persons with Limited English Proficiency, which applies the language access requirements of Title VI of the 1964 Civil Rights Act to the federal government itself (HHS, 2013b). However, the plan has not been updated since 2013 and therefore does not address the continued and growing use of technology in health care—including electronic patient portals to access health information and telehealth and other trends that impact language access; HHS released an annual progress report on language access in 2023 and acknowledged that the 2013 plan needs to be updated (HHS, 2023a; HHS OCR, 2023).

Although HHS clearly recognizes the importance of addressing health literacy and numeracy and ensuring language access, these action plans and standards are not legally binding or enforceable. For example, federal contracts do not require contractors to comply with the National CLAS Standards, or address health literacy and numeracy if there are direct communications with patients, health care consumers, or members of the public. With no requirements, monitoring, or enforcement of these “best practices” for effective communication with racially and ethnically diverse people, inequities will be perpetuated because vital information will simply not be available or understandable. The literature is extensive on how applying the standards discussed in this section and health literacy interventions and ensuring language access can advance health literacy and therefore improve both access to health care and health outcomes (Berkman et al., 2011; Diamond et al., 2019; Flores, 2005; Flores et al., 2003, 2012; IOM, 2004; Karliner et al., 2007; Miller, 2016; Sheridan et al., 2011).

In 2016, HHS OMH published a compendium on CLAS in health and health care; although it provided a state-by-state review of standards, planning, policies, and collaboration on CLAS, it found U.S. territories “did not have information online about their National CLAS Standards implementation activities at the time this research was conducted” (OMH, 2016, p. 1).

HEALTH EQUITY IN VALUE-BASED CARE AND QUALITY PROGRAMS

Access to health care alone will not advance health equity—quality of care is essential. Although efforts to improve quality have increased, racial and ethnic inequities remain. For example, AHRQ Annual Quality and Disparities Reports show that although quality has improved for the general population, racial and ethnic inequities have decreased only minimally in those same measures (AHRQ, 2022).

In the last several years, federal health care financing policies have shifted from paying for quantity, through a fee-for-service model, to paying for quality, primarily through alternative payment models, including value-based payment. ACA included several provisions that advance value-based payment. Congress passed the bipartisan Medicare Access and CHIP Reauthorization Act²³ in 2015, which introduced a complete overhaul of how CMS pays physicians through Medicare and created the Quality Payment Program. It includes two tracks: (1) the Merit-Based Incentive Payment System, which adjusts payment based on quality, cost, interoperability, and improvement activities; and (2) Advanced Alternative Payment Models, which include several accountable care organization (ACO)-style programs involving shared risk. CMS has encouraged value-based payment in state Medicaid programs, primarily through demonstration programs (Section 1115 waivers) and alternative payment methodologies, with high levels of variation in adoption and implementation by state (CMS, 2020). CMS has also implemented alternative payment models that hold providers accountable for both quality and cost (Liao et al., 2020). This shift to value-based payment is occurring across all aspects of the health care system, including private and public programs, and has gained traction as a response to rising costs.

In general, CMS alternative payment model programs reflect two types: population-based payment models that target specific populations (e.g., ACOs, Medicare Shared Savings Program, Comprehensive Care Model) and episode-based payment models (Acute Care Episode, Bundled Payments for Care Improvement Initiative, Comprehensive Care for Joint Replacement). These models have demonstrated some spending reductions, without impacting quality (Liao et al., 2020). However, unintended consequences on health inequities have been raised (Werner, 2005; Werner et al., 2005), including the following:

• Population-based payment models dissuade providers from joining to avoid higher risk and/or costly patients (Yasaitis et al., 2016).
• Population-based payment models encourage providers to have a patient pool that is at lower risk or less costly (Lee et al., 2020).
• Episodic payment models, such as bundled payments for lower extremity joint replacement, may have differential receipt by racial and ethnic groups due to providers avoiding financial penalties of caring for complex patients (Kim et al., 2021).
• Geographic variation may occur for participating providers, which may be correlated to those areas deemed as medically underserved.
• Value-based payment models that do not adjust for social risk may exacerbate health disparities by penalizing providers who care for a higher fraction of these patients.

For example, Liao and colleagues (2021) suggests that areas with higher rates of chronic health conditions and socioeconomic deprivation were less likely to have access to providers in episodic payment models. In addition, CMS uses value-based reimbursements to reward or penalize hospitals for key performance measures, such as readmissions. These performance measures, however, do not account for SDOH. For example, the Hospital Care Compare, helps rate U.S. hospitals on care quality (CMS, 2023c). Fahrenbach and colleagues (2020) found that hospitals with a poorer rating were more likely to be in neighborhoods with a higher level of social risk.

Considerable discussion and experimentation have addressed whether, and how to, make adjustments in value-based payment arrangements for the varying social risks experienced by diverse patients that negatively impact health (Alberti et al., 2020; ASPE, 2021b; Jaffery and Gelb Safran, 2021; NASEM, 2016; NQF, 2014). Most current health care payment arrangements do adjust based on clinical risk factors, usually by age (for example, higher use and costs among older patients) and by some measure of the number, severity, and complexity of diagnosed diseases and conditions (for example, the hierarchical condition category coding) (Watson, 2018). The Assistant Secretary for Planning and Evaluation has listed poverty, race and ethnicity, social isolation, and limited community resources as among the social risks that impact health (ASPE, 2021a). The National Academies has defined social risks as including socioeconomic position; race, ethnicity, and cultural context; gender; social relationships; and residential and community context (NASEM, 2016). As noted, value-based payment models generally do not account for social risk and its contribution to exacerbating racial and ethnic inequities. Not accounting for social risk results in adverse consequences, such as underpaying providers who care for a disproportionately higher number of complex and socially at-risk patients and disincentivizing health insurance companies and payers from paying for services for the sickest of the sick (i.e., cherry-picking) (NASEM, 2017a). Accounting for social risk factors in value-based payment can help reduce health inequities by aligning incentives to improve quality, improve accuracy of reporting and monitoring health care and quality inequities, and adequately compensate providers with a higher number of complex patients.

Given the adverse consequences in the current value-based payment models, efforts to include social risk factors are warranted to reduce racial and ethnic inequities more effectively. Jaffery and Gelb Safran (2021) recommend two approaches. One includes up-front, additional payments based on social risk much like CMS reimburses hospital and Medicare Advantage plans based on diagnosis and severity of illness (Jaffery and Gelb Safran, 2021). The Health Care Payment Learning and Action Network Health Equity Advisory Team also recommends up-front payments and adjustments for social risk to advance equity in value-based payments (HCPLAN, 2021, 2022, n.d.); this includes up-front infrastructure payments to support the participation of providers who have served a higher number of patients with increased social risks and generally have less capacity and experience with value-based payment (HCPLAN, 2022). The second includes incentives for improvements that incorporate social risk in a way that drives overall improvement but with added incentives for improvements in groups with higher social risks (an approach with demonstrated success) (Jaffery and Gelb Safran, 2021). The National Quality Forum recommends adjustments for social risks in quality measurement when there is a conceptual or methodological basis for doing so, such as qualitative or empirical evidence documenting the impact of social risk factors on care delivery, health outcomes, or costs (NQF, n.d.). Most recently and based on the findings from a National Academies (2017a) report, CMS proposes²⁴ to incorporate social risk factors through the “health equity index reward” as part of its 2027 STARS Ratings. The objective is to incentivize Medicare Advantage plans to provide high-quality care to populations with specific social risk factors (CMS, 2022b).

Awareness is increasing that optimal health is not solely the result of health insurance or use of health care services. Similar to Medicaid innovations related to SDOH described earlier in this chapter, incremental efforts to address SDOH in some Medicare alternative payment models are also underway. HHS has highlighted the importance of addressing the SDOH and more proximate health-related social needs, such as housing insecurity and food insecurity. For example, CMS developed a tool and required screening for these needs in its Accountable Health Communities innovation model, based on work by the National Academies (ASPE, 2021b; CMMI, n.d.; CMS, 2023a; NASEM, 2016). More recently, CMS' ACO Realizing Equity, Access, and Community Health model requires collecting health-related social needs and demographic data and payment adjustments for ACOs serving Medicare beneficiaries who have historically been underserved (CMS. gov, 2023a; Corner et al., 2023). Other ACO models also have incorporated addressing health-related social needs in their design and implementation (Fraze et al., 2016). As described, CMS has issued guidance for states to use Medicaid and CHIP funding to address health-related social needs, and states are increasingly incorporating strategies to do so in their Medicaid programs (CMS, 2021b; Guth, 2022). CMS also has issued specific guidance for Medicare Advantage health plans to address food insecurity and transportation as part of the Health Equity Incubation Program in the Medicare Advantage Value-Based Insurance Design model for calendar year 2023 (CMS.gov, 2023b). More recently, CMS has begun requiring screening for health-related social needs by hospitals as part of the Inpatient Prospective Payment System and encouraging such screening by physicians as part of the Medicare Merit-Based Incentive Payment Program.²⁵

Conclusion 5-4: Value-based payment and other programs intended to improve quality have, to date, not prioritized health equity. For example, such programs do not measure and incentivize reduction of racial and ethnic health inequities.

REPRESENTATION AND INCLUSION IN HEALTH CARE

As discussed earlier in this chapter, access to quality care requires more than insurance. Care needs to be appropriate—for example, representation matters in clinical trials. Care needs to be unbiased and culturally responsive and include a workforce that represents a diverse population. Critically, community voice and expertise are needed to inform federal policies to ensure that care is accessible and tailored to the needs of racially and ethnically minoritized populations.

Clinical Trial Inclusion

Health care innovation is largely driven by the development of new medical treatments and devices. Clinical trials and FDA approval of medical treatments and devices are the pathways through which these advances are made available to the public. Although racially and ethnically minoritized people comprise approximately 40 percent of the U.S. population, over the past 25 years, they have accounted for only around 4 percent of trial participants (Ma et al., 2021). Additionally, about 8 percent of the U.S. population has limited English proficiency (Census Bureau, 2020). A 1996 survey of researchers with publications on provider–patient communication found that three-quarters excluded study participants with limited English proficiency (Frayne et al., 1996). A 2021 systematic analysis of clinical trials identified from ClinicalTrials.gov found that approximately 29 percent of federally funded clinical trials excluded such participants and only about 5 percent identified specific accommodations for other languages (Muthukumar et al., 2021). It is important to include diverse populations in clinical trials, as many diseases under study disproportionately affect minoritized communities, and it is well documented that a large proportion of therapeutics affect participants of different racial and ethnic backgrounds differently (Ramamoorthy et al., 2015); a diverse study population also broadens study generalizability (for a detailed overview, see NASEM, 2022).

NIH and FDA have sponsored several directives and guidelines aimed at improving inclusion and representation of minoritized populations and women in clinical trials, including the NIH Revitalization Act of 1993²⁶ (NASEM, 2022; OASH, 2020). FDA also requires reporting of data on race, age, and gender in clinical trials. Despite these efforts, inclusion of minoritized populations remains largely unimproved (Kozlov, 2023; Ma et al., 2021; NASEM, 2022). That NIH-sponsored trials have a far higher inclusion rate compared to non-NIH-sponsored trials (about 11 percent and 3 percent, respectively, in one study) offers insight that, although the rate is still unacceptably low, targeted approaches can help (Ma et al., 2021).

In 2022, HHS and FDA published new industry guidance for enrolling underrepresented racial and ethnic groups in clinical trials (FDA, 2022; Kozlov, 2023). These guidelines support creating a Racial and Ethnicity Diversity Plan that includes developing clinical trials with an appreciation of the populations most affected by a disease, goal setting to include racial and ethnic minorities, and plans of action to enroll and retain these populations. Recommended strategies for enrollment and retention include improving access, community engagement, and reducing barriers to participation (for example, considering the lived realities of participants in the research design and not excluding people with limited English proficiency and providing language assistance for them).

This guidance also outlines recommendations for improved data collection for subsets of minority populations to include race, ethnicity, sex, gender identity, age, and pregnancy and lactation status. Greater diversity in clinical trials is possible; for example, SARS-CoV-2 vaccine trials were completed under time pressure but were more diverse than other clinical trials have been (although racially and ethnically minoritized communities were still underrepresented) (Artiga et al., 2021; Khalil et al., 2022). The National Academies also released a report with 17 recommendations on how to improve representation (NASEM, 2022); implementing these would advance this area. See Box 5-9 at the end of the chapter for a selection of relevant recommendations from that report.

BOX 5-9

Example Recommendations from National Academies Reports.

The new FDA guidance is a welcome step forward in promoting fair representation of racially and ethnically minoritized populations in clinical trials. However, these recommendations are nonbinding and will not ensure improvements in trial inclusion. HHS and FDA will need to closely monitor progress on this and report regularly and investigate the inclusion of required elements in future iterations to include both process measures (e.g., investment in barrier reduction) and outcome measure (i.e., proportion of trial participants from racial/ethnic minorities).

Including racially and ethnically minoritized populations, including people with limited English proficiency, is key to understanding the differential effectiveness and toxicity of preventive or therapeutic interventions and expanding study generalizability. Inclusion rates are woefully inadequate, which perpetuates racial inequities. Federal agencies will need to continue efforts to improve clinical trial participation in racially and ethnically minoritized populations and develop concrete steps to ensure improvement in inclusion rates.

In addition to improving clinical trial inclusion, it is incumbent on the NIH, “the largest public funder of biomedical and behavioral research in the world” (NIH, n.d.), to address structural inequality and racism within its policies and programs and reflect on how that affects whose and what kind of research is funded, for which disparities exist. For example, diseases that primarily affect men received more NIH funding than those that affect mainly women (Mirin, 2021; Pierson, 2021), and White researchers are more likely to be funded than Black researchers (Ginther et al., 2011; Hoppe et al., 2019; Pierson, 2021; Taffe and Gilpin, 2021). In 2021, NIH acknowledged “structural racism has significantly disadvantaged the lives of many people of color across our society, including those who conduct or support the science funded by NIH” (Collins et al., 2021, p. 3075). Its new framework for beginning to address this issue “includes understanding barriers; developing robust health disparities/equity research; improving its internal culture; being transparent and accountable; and changing the extramural ecosystem so that diversity, equity, and inclusion are reflected in funded research and the biomedical workforce” (Collins et al., 2021, p. 3075). As part of this plan, NIH announced $60 million for projects focused on reducing health disparities and inequalities and up to $30 million for studying the effect of structural racism and discrimination on health and health disparities (Collins et al., 2021).

HEALTH CARE ACCESS, QUALITY, AND INCLUSION FOR SPECIFIC POPULATIONS

Federal policies uniquely contribute to health and health care inequities, but as noted throughout this report, not all populations are impacted in the same way. For example, the health care system looks very different for AIAN people than it does for the population as a whole due to the unique treaty relationship. The immigrant population and people living in U.S. territories have unique barriers to access, and some populations have specific needs along their life course, such as maternal health, where racial and ethnic inequities are striking. The following sections describe these populations, inequities, and the role of federal policy.

American Indian and Alaska Native Health

It is necessary here to restate that the long-standing history of detrimental federal Indian-related policies has played an important role in the health inequities seen today in AIAN populations (see Chapter 2 for an overview of that history and how it permeates all parts of AIAN life; see Chapter 7 for a review of federal policies that have led to generational trauma). By just about any measure of health, AIAN people are worse off than other racial and ethnic groups; this includes life expectancy, suicide, homicide, and chronic diseases resulting in earlier and increased functional disability and death (see Box 5-7 for these and other health outcomes) (IHS, 2014). As explained throughout this report, the structures, funding, oversight, and data are inadequate to ensure adequate SDOH (i.e., shelter, safety, water, food, education, transportation) to reverse these poor outcomes. This section provides evidence that this is also true for access to quality health care.

BOX 5-7

2014 Report: Comparison of 2007–2009 American Indian or Alaska Native Death Rates to 2008 U.S. All Races Death Rates.

As described in Chapter 2, Tribal Nations have a legal relationship with the federal government that originated in the 1700s and has shaped the conditions that affect their health. The government is obligated to protect tribal lands, assets, and resources, as well as treaty rights and health care, among other responsibilities required by the federal trust relationship (NASEM, 2017b). Yet, the United States severed the government-to-government relationship during the Termination Era²⁸ (see Chapter 2 for more information) and more than 100 tribes lost federal recognition, affecting who were considered Indians in the eyes of Congress and the federal government. For example, they could no longer access IHS hospitals for care, nor could their descendants. No other U.S. population can have its racial or ethnic status legislated, highlighting the unique status of AIAN people. These events constitute a unique source of trauma—the almost complete invisibility of both this history and present circumstances outside of Indian Country. Therefore, it is important that health care providers know whether their patients are members of federally recognized tribes and about their ability to use IHS for care. It can affect referrals and resources available. This and other issues related to access to care for AIAN people are discussed below.

The Indian Health System

The Indian health system is composed of three parts: IHS, tribal health services, and urban Indian health programs (see Box 5-8 regarding the founding and structure of IHS). The population(s) served are members of the 574 federally recognized tribes found in 37 states with a patient population of 2.56 million AIAN (2015–2020 data) (IHS, 2020).

BOX 5-8

History of Indian Health Service (IHS).

Great strides were made through IHS largely coinciding with progress made in health care nationally, such as the development and availability of antibiotics and improved nutrition. However, the health status of the AIAN population still lags on many indicators compared to all other U.S. racial groups. The official report on IHS is Trends in Indian Health, but it has not been updated since 2014. Data for the AIAN population are lagging, misreported and undercounted, and characterized by myriad other difficulties (see Chapter 2 for more on data barriers).

Several challenges keep IHS from reaching its full potential of providing high-quality, efficient health care services and advancing health equity. One major barrier is how it is funded—IHS has not received advance appropriations or mandatory funding.²⁹ Instead, Congress appropriates funds annually to IHS to fulfill the trust responsibility. Per capita spending is far below need at $4,078 (2019 data) (IHS, 2020) versus even the 2019 per capita spending of $11,456 in national health expenditures (CMS.gov, 2022). Funding per person for IHS is much less than Medicaid ($8,109), VA ($10,692), and Medicare patients ($13,815) (see Figure 5-6)—this forces IHS to do more with less and essentially values some lives below others (GAO, 2018). IHS spent $6.68 billion in total in 2017; this is less than 10 percent of the VHA's spending and approximately 1 percent of spending by either Medicare or Medicaid (GAO, 2018). It is important to note that these programs do differ in many ways—such as design, structure, and services—making a direct comparison difficult. However, scholarship on this topic reflects a broad consensus that IHS is underfunded (GAO, 2018; Heisler and McClanahan, 2020; Lofthouse, 2022; Tribal Budget Formulation Workgroup, 2022).

FIGURE 5-6

2017 per capita spending levels and selected program characteristics for four federal health programs: Indian Health Service, Veterans Health Administration, Medicaid, and Medicare. NOTE: Some individuals may receive or have services covered through more (more...)

AIAN people can purchase private health insurance for expenses that IHS does not cover. However, high rates of poverty and low employment rates and free IHS services—even if inadequate—lead to high rates of uninsurance in the AIAN population (Lofthouse, 2022). In 2021, 38 percent of nonelderly AIAN people had employer or other private insurance and 41 percent were covered by Medicaid or other public insurance, leaving the remaining 21 percent to rely completely on IHS services or pay out of pocket (Artiga et al., 2022b).

IHS receives funding through congressional appropriations (mainly discretionary) and a smaller share via collections from reimbursement, including Medicare, Medicaid, CHIP, VA, and private insurance. IHS appropriations have increased gradually from $4.8 billion in FY2016 to $6.0 billion in FY2020 (Lofthouse, 2022) and to $6.8 billion in FY2022 for all its operations (this includes facility maintenance, clinical services, and preventive health measures but not COVID-19 supplemental funding) (ASPE, 2022a). Tribal consultation and priorities (e.g., mental health, alcohol/substance use, and health care facility construction) inform the annual HHS and IHS budget formulation processes. The Tribal Budget Formulation Workgroup concluded that $49.8 billion was needed to fully fund IHS in FY2023 (National Indian Health Board, 2021); the FY2023 President's Budget proposed increased funding from $9.3 billion in FY2023 to $36.7 billion in FY2032, including advance appropriations (ASPE, 2022a). The 2023 omnibus spending package provided IHS with $6.96 billion for FY2023, and, in a historic change, also included advance appropriations totaling $5.13 billion for FY2024 (NCUIH, 2023a). However, it is not clear if advance appropriations will continue past 2024.

Without advance appropriations, IHS is always waiting for the next budget, which is dependent on politics and competing priorities in the House and Senate. Advance appropriations would allow IHS to plan and strategize and avoid gaps in funding. For example, during government shutdowns, funding largely becomes unavailable. This leads to uncertainties for planning, disruptions in operations, and loss of IHS employees. This has greatly impacted the ability of IHS to provide care and leaves the population with the lowest health statistics in many domains and the lowest life expectancy in the United States. Fully funding IHS would help advance health equity among AIAN people. Other large programs that pay for health services receive mandatory funding (such as most Medicare funding) or receive discretionary advance appropriations, allowing for the provided or paid-for services to continue across fiscal years without disruption. Congress could grant IHS advance appropriation authority, as is done for VA. In 2020, the Congressional Research Service released a detailed report reviewing IHS funding and shortfalls and how its funding structure is inadequate (Heisler and McClanahan, 2020). For example, “IHS often runs out of funding for specialty services that are contracted out within its fiscal year, leaving many patients to pay fully out of pocket, use health insurance, or go without care” (Lofthouse, 2022). Indian Country has a saying: better get sick by June (when the money runs out), and only life or limb will be authorized out of direct care (by Contact Health Services or indirect care).

This lack of resources leads to other shortcomings within IHS as well. A 2007 physician survey found that inadequate access to necessary health services such as high-quality specialists and outpatient mental health services, nonemergency hospital admission, and diagnostic imaging services were barriers for quality improvement; physicians reported a lack of funding from IHS for subspecialist care as a critical obstacle (Sequist et al., 2011). The COVID-19 pandemic hit this population exceptionally hard and highlights additional barriers to care, including weather, long distances to obtain health services, unavailability of water, and transporting providers to the care areas in adequate numbers (Arrazola et al., 2020; Hatcher et al., 2020). Funding shortages have led to long patient wait times for routine services and gaps in care because of lack of staff or equipment for onsite services (Lofthouse, 2022). A GAO study concluded that IHS “has not conducted any systematic, agency-wide oversight of the timeliness of primary care provided in its federally operated facilities and, as a result, cannot ensure that patients have access to timely primary care” (GAO, 2016, p. 13).

IHS facilities operate out of 12 physical areas: Alaska, Albuquerque, Bemidji, Billings, California, Great Plains, Nashville, Navajo, Oklahoma, Phoenix, Portland, and Tucson (IHS, n.d.). Notably, all but Nashville are west of the Mississippi River. All but two hospitals and most other facilities (such as clinics) are west as well (see Figure 5-7). This leads to many AIAN people not being able to access IHS care. For example, New York City is the city with the most AIAN people, due in large part to the relocation programs of the Termination Era. About 194,000 New Yorkers identify as AIAN (Khurshid, 2020; USAFacts, 2022), yet they have no direct service IHS facilities, including hospitals, in New York City, Washington, DC (where IHS headquarters is located), or any other major eastern city. Therefore, to access IHS hospitals, a member of a federally recognized tribe would have to travel to the west to seek care (direct) or try to get authorized for care (indirect) in the east.

FIGURE 5-7

Map of Indian Health Service facilities. NOTE: Colors represent the 12 Indian Health Service Areas (regions): Alaska, Albuquerque, Bemidji, Billings, California, Great Plains, Nashville, Navajo, Oklahoma City, Phoenix, Portland, and Tucson. SOURCE: ASPE, (more...)

IHS funding for urban health has been around 1 percent of an already inadequate budget (NCUIH, 2023b). Yet 70 percent of AIAN live in urban areas (ASPE, 2022a). Therefore, an eligible patient who lives in the east faces an undue burden. Access is affected geographically, financially, by setting (urban or rural), and by allowances for direct or indirect care.

It is important to understand that as people in a unique situation as sovereign nations, AIAN individuals are highly regulated, as is their health system. A federal trust responsibility has been in place since the turn of the 19th century (see Box 5-8). That is, tribes ceded land under treaties, and in return, the federal government owed a trust responsibility to acknowledge their sovereignty and provide for their well-being. However, the responsibility has not been upheld. The implications of this are far reaching. Senator Daniel Inouye (D-HI) famously noted, “Over 100 years ago, the Indian people of this nation purchased the first pre-paid health care plan, a plan that was paid for by the cession of millions of acres of land to the United States” (Inouye, 1993). Land for federal services was in effect “a prepaid health care plan in perpetuity” (Bergman et al., 1999, p. 588).

Increased funding alone will not solve all IHS institutional problems—for example, the AIAN population has many socioeconomic factors that also contribute greatly to poor health outcomes. However, increased funding would improve access to health services and medical equipment and address the shortage of trained medical staff. Until funding levels for IHS meet parity to other federal government health care programs (such as Medicaid and VA), no persistent, strategic, and structural change in this agency and for the AIAN population is possible (see Chapter 8 for a recommendation to increase IHS funding and related needs).

Conclusion 5-6: The Indian Health Service is the primary source of health care for many American Indian and Alaska Native people. The current structure and inadequate funding level of the Indian Health Service contributes to health inequities for American Indian and Alaska Native people.

Maternal Health

There are profound racial, ethnic, and tribal inequities in maternal health. Maternal deaths are on the rise in the United States, with approximately 1,200 in 2021 (versus about 806 in 2020 and 750 in 2019) (Hoyert, 2023). Furthermore, a staggering 84 percent of pregnancy-related deaths in 36 states from 2017 to 2019 were preventable (CDC, 2022b). There are stark racial inequities in maternal mortality due to differences in access to prenatal care, quality care, and other factors, such as unconscious bias in health care professionals. Black and AIAN women are more likely to suffer serious pregnancy-related complications than non-Hispanic White women; Black women are three times more likely to die from pregnancy-related causes and AIAN women are more than two times more likely to die from pregnancy-related causes than non-Hispanic White women (Hill et al., 2022; Petersen et al., 2019; Radley et al., 2021). One access issue for racially and ethnically minoritized populations is lack of maternity care, especially in rural areas, where many labor and delivery units are closing in part because of staffing and financial challenges and stringent abortion restrictions (March of Dimes, 2020; Musa and Bonifield, 2023; Sonenberg and Mason, 2023; Varney and Lenei Buhre, 2023; The White House, 2022). For example, a report found that approximately 7 million women of childbearing age lived in a county with limited or no access to maternity health care services (March of Dimes, 2020). Access to permanent contraception after delivery also varies by race and ethnicity (Grady et al., 2015); the inability to access the desired method can result in unintended, short-interval pregnancies, which increases the risk of maternal and neonatal/pediatric morbidity and mortality (Arizona MMRC, 2020; Potter et al., 2017).

Many federal policies are relevant; not all could be included here. See, for example, Chapter 3 for information on the Special Supplemental Nutrition Program for Women, Infants, and Children, a national program created to ensure that women, infants, and children under 5 years who are from low-income backgrounds can access food and information on healthy eating practices (Marchi et al., 2013); it provides breastfeeding support and promotion and health care referrals. See also the previous sections in this chapter on Medicaid presumptive eligibility for pregnant people and postpartum coverage. This section discusses the Black Maternal Health Momnibus Act of 2021 (Momnibus),³⁰ a comprehensive bill aimed to address multiple aspects of maternal health, and the lack of a federal policy protecting access to abortion.

Momnibus

Given the complex interplay of SDOH that contribute to women's health, perinatal health, and racial and ethnic health inequities, needed policies are transectoral, requiring multiple sets of bills bundled as a collective approach that seeks to improve health inequities. Evidence-based, equitable, and patient-centered health policy change that accounts for the multilevel causes of disparities is needed to improve health outcomes. One such example is Momnibus, proposed by the Black Maternal Health Caucus (Black Maternal Health Caucus, n.d.). It is a set of 12 individual bills, each of which was orchestrated around an identified lead contributor to maternal mortality inequities, including addressing SDOH, such as housing, nutrition, and employment; funding equity-promoting community-based organizations that work to improve maternal outcomes; and expanding and diversifying the perinatal care workforce. A Momnibus bill addressed the compelling need for improvement in data collection and related processes and quality measures to better understand and track improvements in maternal health care delivery and related inequities. Investment in maternal mental health care and women who are incarcerated were also specific foci for these bills. Digital tools to improve telehealth delivery were included along with a call for novel payment models to incentivize high-quality care. Investment for veterans' maternity care coordination was the one piece of legislation of the 12 that was signed into law (Maternal Health Learning & Innovation Center, 2022). Many other components were included in the House-passed Build Back Better Act³¹ but excluded from the Inflation Reduction Act³²; additional pieces were enacted in the FY2022 appropriations bill and included in the FY2023 budget proposal, but Congress has not acted on many bills from the Momnibus package aimed specifically at the Black maternal health crisis (Clark, 2023; Clark and Johnson, 2022; Georgetown University, 2022). Momnibus is a good example of comprehensively acknowledging the many factors that contribute to health inequities and the comprehensive legislation needed to address such complexity.

Medical Care Access for Unintended Pregnancies

Unintended pregnancy is an important problem in the United States that is associated with health risks to a pregnant person, their family, and society. About half of all U.S. pregnancies are unintended (CDC, 2021; Guttmacher Institute, 2019). An integral factor underlying this rate is a lack of access to effective family planning services (Dehlendorf et al., 2010; Finer and Henshaw, 2006; Frost et al., 2008). Unintended pregnancy is also associated with poor outcomes like low-birthweight infants, infant mortality, and maternal morbidity and mortality (Dehlendorf et al., 2010). Empowering people to plan when they want to have children is essential, and thus access to abortion is an important part of reproductive care.

Pregnancy is not easy or safe for everyone and it can affect the physical, emotional, social, and economic health of individuals and families. Additionally, pre-existing and co-occurring medical conditions can present additional risks in carrying a pregnancy to term. Pregnancy takes a mental toll as well; mental health conditions are one of the most frequent underlying causes of pregnancy-related deaths in the United States (Trost et al., 2022). Abortion restriction has economic effects as well; people can be confronted with numerous financial challenges in carrying a pregnancy to term while supporting their children and families (Bahn et al., 2020; Banerjee, 2023; Foster et al., 2022).

Relevant policy change affecting reproductive care is the overturning of Roe v. Wade;³³ the Supreme Court overturned the Roe precedent in June 2022 with its decision in the Dobbs v. Jackson Women's Health Organization³⁴ case, invalidating the basic Constitutional right to abortion and leaving its legality to states. Legal abortions are safe and effective and are an evidence-based, standard-of-care option within comprehensive medical care (NASEM, 2018c). The procedure is highly prevalent; the Guttmacher Institute estimates that about 25 percent of U.S. women have had an abortion by age 45 (Guttmacher Institute, 2017). Adolescent, lower-income, minoritized, and single women who have poverty rates twice that of other groups have higher rates of unintended pregnancies, exacerbating the financial effect (Artiga et al., 2022a; Troutman et al., 2020). CDC data report that in 2019, Black women accounted for 38 percent of abortions, White women 33 percent, Hispanic women 21 percent, and 7 percent were among other racial and ethnic groups. The abortion rate was highest among Black (23.8 per 1,000 women) and Hispanic (11.7) women compared to 6.6 among White women (data for other racial and ethnic groups were not available) (Artiga et al., 2022a). Estimates from 2021 suggest that a nationwide abortion ban would increase maternal mortality by 21 percent overall and 33 percent among Black people (Stevenson, 2021). Overturning the Roe precedent and subsequent state laws will likely have the most serious consequences for patients, clinicians, clinics, and communities in states with the largest racial inequities in maternal and reproductive health, the highest maternal mortality rates, and fewer government resources, such as expanded Medicaid (Declercq et al., 2022; Kozhimannil et al., 2022; Redd et al., 2021; Rosenbaum, 2022); providers and specialists may be reluctant to practice in abortion-restriction states, contributing to racial, ethnic, and tribal maternal health inequities (Musa and Bonifield, 2023; Nirappil and Stead Sellers, 2023; Varney and Lenei Buhre, 2023) (see Figure 5-8 for a summary of state abortion bans as of early 2023). Research describing the consequences of this ruling is critical.

FIGURE 5-8

Status of abortion bans in the United States as of March 20, 2023. NOTES: Since the Dobbs decision, 23 states (Alabama, Arizona, Arkansas, Florida, Georgia, Idaho, Indiana, Iowa, Kentucky, Louisiana, Mississippi, Missouri, North Dakota, Ohio, Oklahoma, (more...)

CONCLUDING OBSERVATIONS

Improving health care access and quality through federal policies so that all communities can thrive will require collaboration among federal agencies, prioritizing the needs of communities, and removing barriers to accessing care, which are among the crosscutting themes identified by the committee (see Chapter 8). Many federal health care policies contribute to racial, ethnic, and tribal health inequities. Although the committee could not review all such policies in this report, federal health care policy does provide powerful tools to advance health equity for all people. The examples in this chapter illustrate the importance of access, eligibility, and accountability to existing legislation. For example, removing administrative burden, improving participation rates (e.g., through Medicaid expansion or state innovation waivers), and reducing Medicaid churn could improve coverage and therefore racial and ethnic health equity. Reversing policies that exclude immigrants and people involved with the criminal legal system is also a promising strategy. Changes to the funding level and structure of IHS could improve health equity for the AIAN population. Finally, coordination across HHS could lead to more efficient and higher-quality health programs.

Conclusion 5-7: A lack of coordination, measurement, and prioritization of equity activities across the Department of Health and Human Services contributes to racial, ethnic, and tribal health inequities.

Conclusion 5-8: Increasing access to high-quality, comprehensive, affordable, accessible, timely, respectful, and culturally appropriate health care would advance racial and ethnic health equity. Progress toward universal health care access can be achieved through many federal policy avenues, including but not limited to increasing access to public and private insurance coverage.

Many National Academies reports have evidence-based and promising recommendations for federal action to advance health equity for health care access and quality (including and beyond the federal policies reviewed in this chapter) that have not been implemented and are still relevant (see Box 5-9 for examples on a broad range of health care topics for federal action). In addition, there is more to come. Additionally, a consensus study charged with revisiting the 2003 Unequal Treatment report (IOM, 2003) is underway (Unequal Treatment Revisited: The Current State of Racial and Ethnic Disparities in Health Care).⁴¹

REFERENCES

• AAMC (Association of American Medical Colleges). The complexities of physician supply and demand: Projections from 2019 to 2034. Washington, DC: Association of American Medical Colleges; 2021.
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