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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on the Review of Federal Policies that Contribute to Racial and Ethnic Health Inequities; Geller AB, Polsky DE, Burke SP, editors. Federal Policy to Advance Racial, Ethnic, and Tribal Health Equity. Washington (DC): National Academies Press (US); 2023 Jul 27.
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on the Review of Federal Policies that Contribute to Racial and Ethnic Health Inequities; Geller AB, Polsky DE, Burke SP, editors.
Washington (DC): National Academies Press (US); 2023 Jul 27.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; andconcludes 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 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.
The federal government has had an active role in major events that created racial, ethnic, and tribal health inequities and severely harmed trust in the health system. This includes, for example, the Tuskegee Syphilis Study, which the U.S. Public Health Service conducted from 1932 through 1972 and withheld available treatment from Black men with syphilis, and the involuntary sterilization of American Indian women by IHS in the 1970s, of Puerto Rican women through Law 116, and of Mexican women in California using federal funds through the 1970s (Arce, 2021; Carpio, 2004; Krase, 1996; Lawrence, 2000; Reyes, 2016; Torpy, 2000). These and many other examples of intentional harm to racially and ethnically minoritized people and communities have eroded trust in the federal government and the U.S. health care system generally (see Chapter 7 for more information on this and on trauma and healing). The landmark study of how the behavior of Black men changed after the revelation of Tuskegee in 1972 found increases in medical mistrust and mortality and declining physician interactions with greater proximity to the victims (Alsan and Wanamaker, 2018). The closure of Black hospitals is also part of the landscape of medical mistrust—people lack access to health care institutions and providers who are from and center their communities. Before the Civil Rights Movement, hospitals outright refused to admit Black patients or treated them in segregated wards in undesirable locations, and Black doctors were excluded from working in many hospitals. Black-run hospitals opened in the late 1890s, though many were underresourced (Jordan, 2022; McBride, 2022). The Freedman's Hospital was the only federally funded health care facility for Black people when it was established in 1862 to provide care for formerly enslaved people (Duke University Medical Center Library, 2022; Howard University Hospital, n.d.). It is now Howard University Hospital, one of the few remaining traditional Black hospitals. Title VI 4 of the 1964 Civil Rights Act outlawed segregation and discrimination based on race, color, or national origin in any program or activity receiving federal funds or financial assistance. Passed 1 year later, Medicare made hospital funding contingent on desegregation (Duff-Brown, 2021; Yearby et al., 2022). See the sections later in this chapter on implicit bias and racism and the health care workforce.
Federal policies related to health care are generally intended to improve health, with some explicitly meant to address health inequities. Yet racial and ethnic health inequities can be identified across most, if not all, federal health care programs. Federal policies continue to contribute to health and health care inequities but also serve as a powerful tool to mitigate and eliminate inequities and advance health equity.
Federal policies have also reduced inequities. In recognition of the role the federal government plays in advancing health equity, HHS released the CMS Framework for Health Equity 2022–2032, which outlines in five domains its strategy to advance health equity through CMS policy: improving data collection; identifying and adopting policies that can advance health equity; building appropriate health care organizations and workforce; advancing language access, health literacy, and cultural humility; and improving all forms of access regardless of ability (CMS, 2022a). This document identifies health equity as a national priority and is broadly inclusive in defining underserved populations as identified in Executive Order 13985 5 Advancing Racial Equity and Support for Underserved Communities Through the Federal Government.
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 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.
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. )
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. )
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 Act 6 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 Act 7 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 allowed 9 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 Act 10 (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 Act 11 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 11 12 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).
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. )
In addition to inequities in health care coverage, access to health care services, including a regular primary care provider, is also inequitable. Having a regular source of care is associated with better health outcomes, fewer disparities, and lower costs (AHRQ, 2016). Health care quality and use can be affected by discrimination, bias, and racism in health care settings (Bailey et al., 2017; Williams et al., 2019). The landmark Institute of Medicine report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, describes the solid evidence base indicating Black, Latino/a, AIAN, and other minoritized people receive lower-quality care compared to White people; this remains true after adjusting for income and insurance coverage (AHRQ, 2022; IOM, 2003; Yearby et al., 2022). These populations are also more likely than White people to live in areas with shortages of primary care physicians, mental health professionals, and surgeons. Public and rural hospital closures contribute to this, in part because hospitals can be a base for some primary care physicians' practices (Bailey et al., 2017; Yearby et al., 2022). Rural communities with larger proportions of Black and AIAN residents are farther from many hospital services, such as emergency and trauma services, than those with a high proportion of White residents (Eberth et al., 2022).
One mechanism by which poor access to providers may affect health is suggested by the literature on the effects of lacking a regular primary care provider. It is associated with delayed or no consistent care (HHS, n.d.-c). According to a Kaiser Family Foundation analysis, 34 percent of Hispanic adults reported not having a provider in 2021 (Hill et al., 2023). Percentages for other racially and ethnically minoritized people were similarly higher than for White adults (16 percent): 24 percent of AIAN and 21 percent of NHPI people reported lacking a provider, as did 19 and 18 percent of Asian and Black people, respectively (Hill et al., 2023). The same analysis found more Hispanic and Black children (9 and 7 percent, respectively) without a usual source of care than White children (4 percent) (Hill et al., 2023). Access to specialty care is also inequitable among racially and ethnically minoritized children (Flores and The Committee on Pediatric Research, 2010).
The relationship between access to care and health also plays out in differential rates of early detection of disease that result from differential engagement in clinical preventive services can help prevent or slow disease progression. Based on 2018 data, differences among racial and ethnic groups exist for preventive care (HHS, n.d.-d). For example, whereas 7.8 percent of White adults ages 35 years or over report receiving appropriate clinical preventive services, only 5.4 percent of Black and 4.2 percent of Hispanic or Latino/a people did so (HHS, n.d.-d).
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.
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.
As Medicaid is a federal–state partnership, both governments are jointly responsible for its many aspects, including financing, eligibility, implementation, and delivery. Medicaid is financed based on the federal medical assistance percentage (FMAP) formula (which considers each state's average per capita income relative to the national average) (KFF, n.d.-b). The FMAP formula favors state investments—the more a state spends, the more it receives in matching federal funds. 13 FMAP ranges from 50.0 percent in several states to 77.3 percent in Mississippi in FY2024 (KFF, n.d.-b). Furthermore, additional federal subsidies incentivize state participation, program requirements, and implementation policies and procedures. 14
This financing structure also provides states with financial flexibility to tailor programs to align with state budgetary priorities, political preferences, and population health needs. Federal policy offers states substantial flexibility to design and implement their Medicaid programs. States can use waivers, innovation awards, and other program mechanisms to support innovations, provide services to specific populations, and test strategies for improving efficiency and effectiveness (see the Innovation section in this chapter). Many states have leveraged these flexibilities to focus on health equity, but these have also contributed to health inequities, as discussed later.
Medicaid and CHIP coverage in U.S. territories has some similarities and important differences compared to the 50 states and DC. The territories use different eligibility criteria, and Puerto Rico's CHIP program covers additional children who exceed the federal poverty level for Medicaid eligibility (MACPAC, 2021b). Due to differences in economic status and determining eligibility, the five territories vary widely in the proportion of the population enrolled in Medicaid and CHIP, from 68.4 percent in American Samoa to 21.2 percent in Guam (MACPAC, 2021b). Some of the requirement differences in the states and DC compared to the territories create inequities in health care coverage and access to health care for U.S. citizens (those born in the Commonwealth of the Northern Mariana Islands, Guam, Puerto Rico, and U.S. Virgin Islands) and U.S. nationals (those born in American Samoa) residing in the territories. The most high-profile example is that the territories' FMAP has been capped 15 at 55 percent (with occasional increases by Congress), and the territories have been responsible for costs beyond that federal match limit (MACPAC, 2021b). In 2023, the Consolidated Appropriations Act 16 increased the FMAP to 83 percent for American Samoa, the Commonwealth of the Northern Mariana Islands, Guam, and the U.S. Virgin Islands, along with a 5-year extension of the 76 percent FMAP for Puerto Rico (McCoy and Wheatley, 2023).
In discussing the contributions of Medicaid to racial and ethnic health inequities, it is important to recognize the context and historical origins of its creation. Medicaid and Medicare were adopted on the same day (July 30, 1965) in the same piece of legislation, yet researchers have attributed fundamental differences in the programs to the influence of racism and compromise tied to federalism (see Chapter 2 for more on federalism) (Katznelson, 2013; Katznelson and Mulroy, 2012; Lieberman, 2001; Pearson, 2019; Skocpol, 1995). In 1935, when President Franklin Roosevelt proposed a universal social security program, Southern White people feared disruption of the racial hierarchy and financial dependence of Southern Black people, resulting in a compromise that excluded domestic workers and agricultural laborers (both groups were predominantly Black) from the Social Security Act. 17 Medicare passed in 1965 as a program fully administered by the federal government, based generally on reaching age 65. However, because of the concurrent civil rights legislation (the Voting Rights Act 18 and Civil Rights Act 19 ) and immense changes it brought about, Southern states were generally resistant to federal involvement (Nolen et al., 2020; Pearson, 2019). Therefore, unlike Medicare, Medicaid was determined to be a state-run program, as it limited federal involvement and allowed states to administer health programs for low-income people (Nolen et al., 2020). Medicaid was created on the foundation of public assistance programs, including means and asset eligibility requirements, and a federal–state partnership, which allowed states to opt out entirely and determine many important aspects of eligibility and coverage. Under this shared authority, Southern states were generally slower to participate, but 49 states implemented the program by 1970 (Kaiser Commission on Medicaid and the Uninsured, 2012). Slow uptake by some states of the original program (CHCS, 2019; Paradise et al., 2015) and rejection of Medicaid expansion by Southern states, with disproportionately large racially and ethnically minoritized populations, contributed to inequities since the program's inception and continue today.
The federal–state structure of Medicaid contributes to inequities in eligibility because states have substantial discretion to decide who is eligible and the process for enrollment. To be eligible, individuals and families must be either U.S. citizens or qualified noncitizens and meet specific financial and nonfinancial criteria. Federal law requires states to cover specific groups, including low-income families, pregnant people, children, and individuals receiving Supplemental Security Income (SSI) based on a disability determination (Rudowitz et al., 2019). Financial eligibility is determined based on an individual or family's modified adjusted gross income and other assets. Although the process and frequency vary by state, Medicaid agencies generally require applicants to provide proof of their monthly income to qualify and remain enrolled. The monthly income of working individuals and families, especially those with irregular working hours, seasonal employment, and/or multiple jobs, is more likely to fluctuate, resulting in changes in eligibility and gaps in coverage.
States can expand their Medicaid program to include individuals and additional groups based on financial and/or medical need, and income eligibility criteria vary highly by state. Individuals and families living in the states that expanded Medicaid under ACA are eligible if their incomes are 138 percent of the federal poverty level, or $31,781 for families and $18,754 for individuals (KFF, n.d.-c). The 11 states that have declined to expand their Medicaid programs have much lower income-based eligibility criteria. For example, Georgia families (parents in a family of three) are eligible if their income is just 33 percent of the federal poverty level, or $7,600, and childless adults are not eligible at all (CBPP, 2021).
Many eligible individuals and families are not enrolled. Of the approximately 27 million uninsured people in the United States in 2021, 25 percent were eligible for Medicaid (Baicker et al., 2023). In 2020, 60 percent of those uninsured and eligible were adults, nearly two-thirds were racially and ethnically minoritized people, and nearly three out of four were working families (Orgera et al., 2021). Additionally, more than half of uninsured children are eligible for but not enrolled in Medicaid or CHIP (Whitener and Alker, 2020). Participation among eligible children and parents varies highly by state. In 2015, 14 states and DC had child participation rates above 95 percent, 12 states had rates of 85–89 percent, and 2 states were below 85 percent (Kenney et al., 2017). Participation rates among eligible parents were much lower, with only 3 states and DC having more than 90 percent, 19 states having 80–89 percent, and 27 states with less than 79 percent (Kenney et al., 2017). Barriers to enrollment include lack of awareness, uncertainty regarding eligibility, and administrative hurdles in application. Simple and inexpensive efforts, such as mailing reminders about enrollment deadlines, increase enrollment, especially among low-income individuals (Domurat et al., 2021).
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.
Presumptive Eligibility for Pregnancy.
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.
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.
Despite the federal Medicaid program requirements, states have substantial flexibility to develop and tailor their programs and can use several mechanisms to increase coverage and access, improve efficiency, and deliver services, including Medicaid waivers that support Section 1115 demonstration projects and innovation, allowing states to “waive” certain statutory provisions of the federal law, as long as the alternative approach achieves federal objectives and is budget neutral. Waivers require federal approval, often following negotiations between state and federal officials. Through waivers and other innovation mechanisms, Medicaid allows for a range of strategies and tools to specifically address racial and ethnic health inequities; in 2022, 35 states reported Medicaid initiatives to do so (Guth and Artiga, 2022).
Federal Medicaid policies generally prohibit using Medicaid funds for nonmedical services. However, 33 states report addressing SDOH through contractual provisions with Medicaid managed care organizations. These requirements aimed at reducing inequities range in focus and include screening for behavioral health and social needs, improving data collection, partnering with community-based organizations, employing community health workers (CHWs), and offering social services referrals (Guth and Artiga, 2022). Another way to leverage managed care organizations to reduce health inequities is to allow them to pay for “in-lieu-of” services; California has used this strategy to address SDOH such as housing, food, and behavioral health needs. Additionally, 12 states include reducing racial and ethnic health inequities as performance metrics in quality incentive programs (Guth and Artiga, 2022).
Moreover, states can use Section 1115 demonstration waivers to experiment with new approaches to reducing racial, ethnic, and tribal health inequities. For example, Massachusetts' 1115 waiver was approved and includes a Hospital Quality and Equity Initiative, which will incentivize data collection, performance-based equity metrics, and programs to improve workforce competence, capacity, and diversity (HHS, 2022b; MassHealth, 2022). Section 1115 waivers can be used to target SDOH and allow states to provide high-need enrollees with health-related social needs services, including housing and nutrition support and linkage to other benefit programs. California received first-in-the-nation approval in 2023 for a Section 1115 demonstration amendment to provide people returning from jails and prisons with certain prerelease services to increase health care coverage, improve care transitions, and maximize successful re-entry into the community by connecting them to Medicaid providers in their communities (CMS, 2023b). Substance use treatment and behavioral health services can be paid for 90 days before release. Soon after California received its waiver, the federal government encouraged additional states to seek waivers to cover substance use treatment for incarcerated people (Han, 2023). In 2022, a 1332 waiver 20 was approved for Washington State to expand health insurance access for all residents by exempting it from ACA requirements and allowing the state to offer undocumented people access to qualified health plans (Choi, 2022; CMS, 2022c).
Residential treatment for substance use disorders is not a covered service under Medicaid in 13 states, but states can apply for Section 1115 waivers to permit this service coverage. Thirty-seven states and DC have sought Section 1115 waivers to provide residential substance use treatment in institutions for mental diseases. CMS guidance describes criteria for states to obtain such a waiver. There is variation in execution, as states need to request and receive a Section 1115 waiver to provide access to residential treatment services. The policy impacts a disproportionate proportion of Black and other racial and ethnic groups dependent on Medicaid; some states with a large percentage of Black residents have not applied for the Section 1115 waiver (such as Alabama, Georgia, Mississippi, and South Carolina) (MACPAC, 2023b).
Conclusion 5-3: State variation in implementation of the federal Medicaid law, most notably the state variation in the implementation of ACA Medicaid expansions, creates barriers to enrollment and differences in program eligibility and accessibility that have widened the gap in insurance coverage and access to care. The barriers disproportionately affect racially and ethnically minoritized populations, thus contributing to place-based racial and ethnic health inequities. While federal policies can address these barriers by limiting restrictive use of Medicaid flexibilities and effectively incentivize increasing access, these policy changes will require overcoming political and philosophical barriers related to Medicaid, federalism, and the role of government to ensure universal access to health care.
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.
Medicaid Estate Recovery.
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):
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 13166 22 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).
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 Act 23 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 proposes 24 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.
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.
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 1993 26 (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.
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).
Due to the substantial federal investment in health care and the ubiquitous nature of federal policy making related to health care, health care policy is of particular interest to many powerful industries, including pharmaceuticals, insurance, hospitals, and care professionals. These industries are represented by organizations with strong relationships and resources, which are used to inform and influence federal policy making. Large interest groups (for example, Pharmaceutical Research and Manufacturers of America, America's Health Insurance Plans, and AARP) are equipped to participate in all aspects of federal policy making, including the public comment process, the judicial process, and lobbying. Patients and communities, by contrast, are often unheard and unrepresented, resulting in a power imbalance between the industries and those being cared for.
This power imbalance trickles down to state, local, organizational, and individual health care decisions. Increasingly, federal efforts to level the playing field are underway. For example, federal agencies are undertaking listening sessions, roundtables, and other methods to hear from communities and community-based organizations. Patient-reported data are included in value-based payment programs and made publicly available as hospital and physician quality ratings. Federally qualified health centers are required to have patient advisory boards/patient governing boards/patient representation to guide organizational policies and practices. The Patient Centered Outcomes Research Institute, with substantial funding from the federal government, is developing, testing, and implementing patient-centered research and clinical practices. Efforts to include meaningful community involvement and community voice in health research and federal health policy making, such as Medicaid, are promising and could be strengthened by increased investment and standardization across all federal policy-making activities, as called for in Executive Order 13985 (Adkins-Jackson et al., 2022; Etchegary et al., 2022; Goold et al., 2018, 2019; Manafò et al., 2018; Myers et al., 2020; NAM, 2022; Race Forward and PolicyLink, 2023).
As described, race and ethnicity are predictors of the quality of health care received, in part because of health care professionals' and systems' biases (IOM, 2003). Racism in health care operates at the individual (in the form of implicit and explicit bias and internalized racism), interpersonal, institutional, and structural levels (AMA, 2021; Jones, 2000). At the individual level, health care workers are not immune to biases and prejudices that contribute to disparities (IOM, 2003). In studies, implicit biases have been reported by race, ethnicity, age, gender, and body mass index, among other characteristics (Chapman et al., 2013; Coyte et al., 1996; Green et al., 2007; Hawker et al., 2000; Schwartz et al., 2003; Wright et al., 1995). Such biases are associated with worse health outcomes, likely due to a combination of factors, such as impaired patient–clinician relationship, lack of trust, poor communication, and racism (Feagin and Bennefield, 2014; IOM, 2003; Van Ryn et al., 2011). For example, Black patients are more likely to die after being diagnosed with breast or endometrial cancer and are less likely to receive prostate cancer treatments like chemotherapy and radiation therapy (IOM, 2003; The Joint Commission, 2016). Racially and ethnically minoritized patients are less likely to be prescribed pain medicines and more likely to be blamed for being passive about their health care and receive fewer cardiovascular interventions and renal transplants (The Joint Commission, 2016). As individuals, developing awareness of one's implicit biases; developing skills in partnership, empathy, and trust-building; undertaking bystander trainings; and modifying written and oral communication to eliminate derisive terminology are key to mitigating individual-level impacts of implicit and explicit biases (The Joint Commission, 2016; Sabin, 2022).
However, individual-level solutions cannot mitigate what is fundamentally a structural problem (Gee and Ford, 2011; Smedley, 2012). At the larger levels, racism has been institutionalized in medicine. Although race is a social construct, 27 it was manufactured within medicine and science as a proxy for genetic ancestry and hierarchy and used to explain relative differences in form and function (Menand, 2001; Smedley and Smedley, 2005; Wallis, 1995). This has been used to legitimize preferential treatment of White patients and has been institutionalized in medical practice in the form of inclusion into clinical algorithms (Chokshi et al., 2022; Tong and Artiga, 2021; Vyas et al., 2020). This is problematic for two reasons. First, it incorrectly attributes race as a biologically relevant variable rather than accounting for the social and structural determinants of health; racism is a risk factor (Chokshi et al., 2022). For example, race was previously part of the clinical calculator for success rate for a vaginal birth after a previous Cesarean delivery (Vyas et al., 2019). However, there is no genetic basis for such differences. Rather, given that calculators are often based on cohort data, disparate results when race is changed in the calculator simply illustrate racial disparities in health outcomes in the study population upon which the algorithm was developed. In this case, this trend is likely due to the higher rate of primary Cesarean delivery for Black patients, decreased access to obstetrical care, implicit and explicit bias on the part of health care workers, differences in diet, and other differences that may impact fetal growth and pregnancy health. Thus, genetic, epigenetic, and physiologic differences in individuals are conflated with social and structural factors that impact care.
Second, including race in clinical calculators only perpetuates and exacerbates ongoing disparities in health care access and outcomes. For example, using race in the calculator described above leads to a lower predicted likelihood of success for a Black patient with the same clinical characteristics as a White patient. A clinician may alter their practice based on this prediction (ACOG, 2021; Vyas et al., 2019). Recognizing that including race reinforced inequities rather than supporting patient-centered care, the original investigators developed a new calculator for trial of labor after Cesarean without the variables of race and ethnicity, which has been recommended by the American College of Obstetricians and Gynecologists for use rather than the prior version (ACOG, 2021; Vyas et al., 2019). A positive step in redressing racially biased algorithms is the recent recommendation by the American Society of Nephrology and the National Kidney Foundation to use race-free equations in estimating kidney function, and the decision by the Organ Procurement and Transplantation Network to modify kidney transplant wait time for Black patients who have been delayed in receiving a transplant (Mohottige et al., 2023).
Addressing implicit bias and racism requires system-wide reforms, and the federal government plays an important role in eliminating harmful policies, practices, and programs and supporting wide-scale implementation of equitable solutions. For example, it could require that health systems receiving federal funding report outcomes stratified by race and ethnicity (which it already does for some programs). It could also expand the use of patient-reported outcomes to include experiences of bias, discrimination, and/or mistreatment. However, given the opportunities to misuse these data, it is critical that federal policies account for unintended consequences that could exacerbate existing inequities (see Chapter 2 for more information on data challenges and opportunities). Furthermore, identification of inequities is only the first step; it needs to be followed by action to make progress.
Health care outcomes are dependent not only on what care is delivered but where it is delivered and who is delivering it. Compounding the severe nursing shortage (NASEM, 2021b) is a significant shortage of physicians and other professionals. By 2034, a shortage of almost 38,000–124,000 physicians is estimated (AAMC, 2021). In one study, half of women in rural areas had to drive more than 30 minutes to reach an obstetrician-gynecologist (ACOG, 2019c). Health professional shortage areas are designated by HRSA as geographic areas or populations with shortages in professionals in primary care, mental health, or dental care; in 2023, approximately 100 million people lived in primary care health professional shortage areas (HRSA, n.d.). In one study in Philadelphia, census tracts with a high proportion of Black Americans were 28 times more likely to be a low-access area than those with a low proportion of Black Americans (Brown et al., 2016). In another study, states with residents who had higher aggregate racial bias against Black Americans had fewer federally qualified community health centers serving health professional shortage areas (Snowden and Michaels, 2023).
The United States also lacks a diverse and inclusive health care workforce. In 2018, most active physicians were White and male (AAMC, n.d.a); less than 12 percent were Hispanic (5.8 percent) or Black (5.0 percent), and the percentage of Black male physicians in particular remains small (AAMC, n.d.-b; NASEM, 2018a; Poll-Hunter et al., 2023). AIAN and NHPI people are also underrepresented in medicine relative to their proportion of the overall population (Morris et al., 2021). The consistently low proportion of Black physicians is related to systemic barriers and SDOH, as discussed in other chapters, and to the consequences of the Flexner Report (NASEM, 2018a; Poll-Hunter et al., 2023). Released in 1910, the Flexner Report changed the medical education system in the United States; it also resulted in permanently closing five of the seven operating Black medical colleges in 1914. Howard University in DC and Meharry Medical College in Nashville, Tennessee, survived (and only two more have opened since) (Dent et al., 2021; Harley, 2006). A 2020 modeling study estimated that, had these five schools not been closed, they could have hypothetically trained an additional 27,000–35,000 total graduates by 2019 (Campbell et al., 2020). Furthermore, over the last 10 years, more Black physicians have graduated from the 4 historically Black medical schools than from a combination of the top 10 predominantly White medical schools (Montgomery Rice, 2021). The diversity of the pediatric workforce has also not kept pace with the ongoing demographic shift in the racial and ethnic composition of U.S. children. By 2060, about two-thirds of children under age 18 are projected to be a race other than non-Hispanic White (Jones et al., 2021; Saenz and Poston, 2020; Vespa et al., 2020). However, less than 20 percent of certified general pediatricians, pediatric subspecialists, and pediatric trainees are AIAN, NHPI, Black, or Hispanic or Latino/a (The American Board of Pediatrics, 2023). Cultural congruency between patient and health care professional has been shown to improve patient satisfaction and affect outcomes such as improved access to care and reduced maternal and infant mortality (Diamond et al., 2019; Jones et al., 2017; Ku and Vichare, 2023). Thus, investing in and cultivating a workforce that reflects patients' and communities' lived experiences and languages help to build trust, improve access to and quality of care, and advance health equity. For example, a diverse nursing workforce is associated with a reduced risk of severe adverse outcomes, like eclampsia and blood transfusion, during delivery (Guglielminotti et al., 2022).
Additionally, doulas are an evidence-based and cost-effective way to improve birth support and mitigate some racial and ethnic health inequities in maternal morbidity and mortality. Doula care is increasingly recommended to support high-risk racially and ethnically minoritized people during labor (ACOG, 2019a). Doulas are nonclinical support paraprofessionals who provide physical, informational, and emotional support to people before, during, and just after labor (Gruber et al., 2013); such personnel provide continuous one-to-one emotional support (ACOG, 2019a). Their presence is associated with shortened labor, fewer reports of dissatisfaction with the labor experience, and fewer Cesarean and preterm births and low-birthweight babies (Bohren et al., 2017; Boozang et al., 2020; Kennell et al., 1991). It is posited that doulas may mitigate the effects of racism and other SDOH in underserved populations (Hardeman and Kozhimannil, 2016; Wint et al., 2019). They have been used to help initiate breastfeeding among Medicaid beneficiaries in Minnesota: about 98 percent of those with doulas did so compared to about 81 percent of the general population (Kozhimannil et al., 2013).
As with other positions in the health care workforce, the cost associated with training, certification, and registration across states limits the doula workforce and therefore its diversity and patient access to doula care during pregnancy, highlighting the need to improve doula recruitment, payment, and career advancement (Kozhimannil et al., 2015; Van Eijk et al., 2022a,b). Additionally, no national certification standard exists, and reimbursement and funding remain a challenge. However, states can cover doula care through Medicaid; as of 2023, at least 17 states have or are planning to do so (Guarnizo, 2022). Reimbursement and requirements vary by state. For example, Minnesota allows for certified doula care if the doula is supervised by a physician, nurse practitioner, or certified midwife. In 2022, the payment rate was $47 per pre- and postpartum visits (up to six visits) with assistance at the birth billable for $488. Oregon provides reimbursement for two prenatal and two postpartum visits and labor and delivery coverage up to $350 for state-registered doulas (Platt and Kaye, 2020). New Jersey also started using Medicaid funding for doula care, reimbursing up to eight visits and $900 per birth (Robles-Fradet, 2021). Indiana and Nebraska use federal block grant funds for doula care (Platt and Kaye, 2020).
Like doulas, CHWs and patient navigators (PNs) have long been deployed to reach patients, build trust, and address health disparities in underserved areas. CHWs and PNs are able to connect with patients through shared culture and language, similar life experiences, and an understanding of their community members' barriers to health care access. They can identify SDOH issues, suggest referrals to resources, and help patients develop a better understanding of their needs, where to access services, and how to advocate for their health care needs. They have been associated with improved access to health care services, communication with providers, and adherence to health recommendations for racially and ethnically minoritized people (Allgood et al., 2018; Feinglass et al., 2019; Gilmore and McAuliffe, 2013; Simon et al., 2015, 2019). Additionally, several published randomized controlled trials document that parent mentors are highly effective in improving insurance coverage, asthma outcomes, care access and quality, and patient satisfaction, while reducing or eliminating insurance disparities, saving money, and creating jobs in minoritized communities (Flores et al., 2009, 2016, 2018). The Unequal Treatment report (IOM, 2003) also recommended supporting the use of CHWs, and in response to the COVID-19 pandemic, several states reported plans to add CHWs as a Medicaid-covered service and/or a Medicaid provider type or integrate them into care coordination improvement work (Gifford et al., 2021).
Taken together, the roles of doulas, CHWs, PNs, and parent mentors in support of racially and ethnically minoritized patients are meaningful to mitigating disparities that stem from factors such as lack of support, racism, discrimination, and socioeconomic factors (e.g., poverty). Thus, research is needed that examines policies that promote scaling and extending the benefits that doulas, CHWs, and PNs confer to these patients.
Conclusion 5-5: A lack of inclusion and representation in clinical research may perpetuate health inequities because it limits the ability to identify issues of safety or effectiveness that might be specific to the populations that are not well represented. A lack of inclusion and representation in the health care workforce may perpetuate health inequities, given the evidence that suggests better health outcomes when there is identity concordance between patients and providers.
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.
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.
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 Era 28 (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 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).
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).
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.
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.
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.
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 Act 31 but excluded from the Inflation Reduction Act 32 ; 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.
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 Organization 34 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.
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. )
The five U.S. territories, the U.S. Virgin Islands, American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, and Puerto Rico represent unique confluences of historical legacies and contemporary challenges, including inequitable policies (Stolyar et al., 2021). Territorial populations represent U.S. citizens and U.S. nationals (the latter are the residents of American Samoa) whose way of life has been profoundly affected by federal policies that used the territories' land for military purposes and agricultural exports. Those living in the territories—approximately 3.5 million people, 98 percent of whom are racially and ethnically minoritized—experience deep poverty, and a high proportion are dependent on Medicaid and CHIP, but Medicaid financing in the territories has hampered the ability to provide the necessary health care due to limited funds (O'Rourke, 2019; Stolyar et al., 2021). Health centers are an important part of the health care infrastructure and also a good source of information about health in the territories (Stolyar et al., 2021). According to territorial data from the HRSA Uniform Data System, the most prevalent conditions are heart disease, diabetes, obesity, and mental health disorders. In 2020, the economic effects of the pandemic and endemic poverty were cited as the most significant social issues. To illustrate the disparity in poverty rates, 87 percent of health center patients in the territories “had incomes at or below the federal poverty level (FPL) and 98 [percent] had incomes at or below 200 [percent] FPL in 2020. In comparison, 68 [percent] of health center patients in the 50 states and DC had incomes at or below poverty and 91 [percent] had incomes at or below 200 [percent] FPL” (Stolyar et al., 2021). Territories' health centers are funded by Medicaid reimbursement and federal Section 330 grants.
In 2019, approximately 45 million individuals, or 14 percent of the U.S. population, were immigrants (i.e., born outside of the United States; “foreign-born”); however, over half of those immigrants (23 million) are now citizens (“naturalized”), and another 8 million are eligible for citizenship. In 2019, the United States had an estimated 10.3 million undocumented immigrants, or 3 percent of the population (American Immigration Council, n.d.).
Immigration status is an SDOH, impacting access to health insurance, health care and services, quality of care, and ultimately, health outcomes (Asad and Clair, 2018; KFF, 2022a; NASEM, 2018b). Evidence identifies disparities in health care access and outcomes based on immigration status (Cabral and Cuevas, 2020; Hacker et al., 2015; Misra et al., 2021; Morey, 2018; Ornelas et al., 2020; Philbin et al., 2018; Sudhinaraset et al., 2017; Wilson et al., 2018). Immigrants experience differences in health care access and outcomes because of unique and common factors. Many are explicitly ineligible and excluded from health and other resources that other U.S. residents receive because of their immigration status. Moreover, immigrants also experience challenges that impact their health and well-being similar to other low-income racially and ethnically minoritized communities (e.g., inadequate employment opportunities and low wages, lack of employer-based health insurance, poor quality and insecure housing, lack of equitable educational opportunities, community-level violence, and threats to safety). An additional factor for immigrants is the fear of accessing government programs and services because of real and perceived consequences to immigration status, including denial of permanent immigration status, deportation, or family separation (Cabral and Cuevas, 2020; Castañeda et al., 2015; Martinez et al., 2015; Saadi et al., 2020).
In 1996, Congress enacted legislation 35 that restricted Medicaid eligibility for 5 years for immigrants granted legal permanent residence (commonly known as getting a “green card”); this is now known as the “5-year bar” (Broder et al., 2022) (see Chapter 8 and Recommendation 11 for more information). Under the 1996 legislation, states could extend eligibility for Medicaid and CHIP to immigrants during the 5-year bar, using state-only funds. In 2009, the CHIP Reauthorization Act 36 authorized federal matching funds for such expansion (KFF, 2009). As of January 2022, 35 states have extended Medicaid and/or CHIP eligibility to immigrant children (KFF, 2022b). However, only 24 states have extended Medicaid eligibility to immigrant pregnant persons and only four states have extended CHIP eligibility to immigrant pregnant persons. HHS can do more to facilitate and incentivize states to extend Medicaid and CHIP coverage to immigrant children and pregnant people (KFF, 2022b; Medicaid.gov, 2021; Whitner, 2022).
In 2019, the Department of Homeland Security finalized the “public charge” regulation 37 that would have significantly expanded the types of public benefits received that could disqualify an individual from obtaining permanent legal residence status. Prior to this re-interpretation, immigrants would only be potentially disqualified for receipt of SSI, Temporary Assistance for Needy Families (TANF), local General Assistance, and government support for long-term institutional care. The 2019 regulation added receipt of Medicaid, Supplemental Nutrition Assistance Program (SNAP), and federal housing assistance to the list of potentially disqualifying benefits. Multiple federal courts initially blocked implementation, but the Supreme Court overturned those preliminary injunctions while the litigation continued, and the regulation became effective in all states in February 2020 (CIS, 2022b; ILRC, 2021). Significant evidence indicates that it had a chilling effect on immigrants accessing public benefits, including Medicaid and SNAP (Bernstein et al., 2022; Capps et al., 2020; Haley et al., 2020, 2021; Nguyen et al., 2023). The public charge rule has been rescinded and the long-standing interpretation limiting potential disqualifications to receipt of SSI, TANF, local General Assistance, and public support for long-term institutional care has been restored; the regulation went into effect in late 2022. 38 In addition, the fate of over 594,000 immigrants (CIS, 2022a) who have been granted Deferred Action for Childhood Arrivals (DACA) 39 status since 2012 remains in active litigation, as of 2022. The Biden Administration issued a final regulation 40 codifying the program in August 2022, but federal courts enjoined implementation (CIS, n.d.). DACA recipients are not eligible to purchase health coverage through ACA marketplaces because they are excluded from the ACA definition of “lawfully present” (NILC, 2013). Based on a 2021 survey of over 1,000 DACA recipients administered by the University of California, San Diego, United We Dream, National Immigration Law Center, and Center for American Progress, one-third of DACA recipients are uninsured (with 18 percent of respondents losing employer-based health insurance coverage during the COVID–19 pandemic). Nearly half reported a time that they had delayed medical care because of their immigration status, and two-thirds reported that they or a family member had been unable to pay their medical bills or expenses (Lundie et al., 2022). Advocacy efforts are underway to extend eligibility for federally funded health insurance, including Medicaid and state health insurance marketplaces established by ACA (Castro, 2022; NILC, 2013). Finally, efforts to provide a pathway for DACA immigrants to permanent legal residence and eventual citizenship have stalled in Congress (Martínez Rosas, 2022).
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
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Pub. L. 111–148, 124 Stat. 119 (Mar. 23, 2010).
Largely codified in 42 U.S.C. § 1395dd, this requires hospitals to stabilize emergency conditions regardless of a patient's ability to pay. This improved access to emergency services but created a system of universal access for those with disease at the most severe stage or an emergency medical condition (as opposed to preventing illness and treating diseases early); patients are still required to bear the cost of treatment.
Pub. L. 111–5, 123 Stat. 226. This regulates the adoption and use of electronic health records, health information exchanges, and other technology by clinicians and health care settings. It created the Office of the National Coordinator for Health Information Technology with an explicit goal of reducing health disparities, yet inequities remain in clinician access to and use of technology for underserved communities and patients (Lee, 2015; Washington et al., 2017).
42 U.S.C. § 2000d et seq.
Exec. Order No. 13985, 86 FR 7009 (January 2021).
Pub. L. 110–343, 122 Stat. 3881 (Oct. 3, 2008).
29 U.S.C. § 1001 et seq.
As of May 2023, ACA's requirement of private plans to cover preventive services without cost sharing was in litigation (KFF, 2023a).
ACA required states to expand Medicaid or lose federal funding for the program; the Supreme Court ruled this unconstitutional in National Federation of Independent Business v. Sebelius, 567 U.S. 519 (2012) (Cornell Law School, n.d.).
Pub. L. 116–127, 134 Stat. 178 (Mar. 18, 2020).
42 U.S.C. § 11701 et seq.
As of February 2023: Alabama, Florida, Georgia, Kansas, Mississippi, North Carolina, South Carolina, Tennessee, Texas, Wisconsin, and Wyoming.
For example, in a state with an FMAP of 50 percent, the federal government contributes one dollar for every dollar spent by the state on Medicaid, or 50 percent of the combined total. In a state with an FMAP of 75 percent, the federal government would contribute three dollars for each state dollar (Provost Peters, 2008).
ACA included an enhanced FMAP rate for the Medicaid expansion population, with 100 percent federal financing from 2014 to 2016 and a decrease to 90 percent by 2020 (Snyder and Rudowitz, 2015).
In accordance with Section 1108 of the Social Security Act.
Pub. L. 117–328, 136 Stat. 4459 (Dec. 29, 2022).
42 U.S.C. §301 et seq.
Pub. L. 89–110, 79 Stat. 437 (Aug. 6, 1965).
Pub. L. 88–352, 78 Stat. 241 (July 2, 1964).
“Section 1332 of the Affordable Care Act (ACA) permits a state to apply for a State Innovation Waiver (also referred to as section 1332 waiver) to pursue innovative strategies for providing residents with access to high quality, affordable health insurance while retaining the basic protections of the ACA” (CMS, n.d.).
“In the context of health literacy, numeracy describes a person's ability to understand clinical and public health data. We use numeracy to make decisions about screening and treatment options” (CDC, 2022d).
Exec. Order No. 13166, 65 FR 50121 (August 2000).
Pub. L. 114–10, 129 Stat. 87 (Apr. 16, 2015).
Medicare program; contract year 2024 policy and technical changes to the Medicare Advantage program, Medicare Prescription Drug Benefit program, Medicare cost plan program, Medicare Parts A, B, C, and D overpayment provisions of the Affordable Care Act and programs of all-inclusive care for the elderly; health information technology standards and implementation specifications, 87 FR 79452 (December 2022).
Medicare program; hospital inpatient prospective payment systems for acute care hospitals and the long-term care hospital prospective payment system and policy changes and fiscal year 2023 rates; quality programs and Medicare Promoting Interoperability Program requirements for eligible hospitals and critical access hospitals; costs incurred for qualified and non-qualified deferred compensation plans; and changes to hospital and critical access hospital conditions of participation, 87 FR 48780 (August 2022).
Pub. L. 103–43, 107 Stat. 122 (June 10, 1993).
Genetic ancestry affects human health; however, this is distinct from the impact of race, which is a social construct that has its foundations in systemic racism.
This period ended the federal government's recognition of sovereignty of tribes, trusteeship over Indian reservations, and the exclusion of state law's applicability to Native persons.
“Advance appropriations become available for obligation one or more fiscal years after the budget year covered by the appropriations act. Although advance appropriations are provided in order to manage specific planning concerns, they also have implications for the prevention of funding gaps and the avoidance continuing appropriations” (Tollestrup and McClanahan, 2019). Mandatory spending, also known as “direct spending,” is mandated by existing authorization laws. This type of spending includes funding for entitlement programs, such as Medicare and Social Security, and other payments to people, businesses, and state and local governments (Tollestrup, 2021).
H.R. 959, 117th Congress (2021) and S. 346, 117th Congress (2021).
H.R. 5376, 117th Congress (2021).
Pub. L. 117–169, 136 Stat. 1818 (Aug. 16, 2022).
Roe v. Wade, 410 U.S. 113 (1973).
Dobbs v. Jackson Women's Health Organization, 597 U.S. ___ (2022).
Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Pub. L. 104–193, 110 Stat. 2105 (Aug. 22, 1996) and Illegal Immigration Reform and Immigrant Responsibility Act of 1996, enacted as Division C of the Defense Department Appropriations Act, 1997, Pub. L. 104–208, 110 Stat. 3008 (Sept. 30, 1996).
Pub. L. 111–3, 123 Stat. 8 (Feb. 7, 2009).
Inadmissibility on Public Charge Grounds, 84 FR 41292 (August 2019).
Public Charge Ground of Inadmissibility, 87 FR 55472 (September 2022).
Immigration policy that provides temporary protection from deportation, as well as work authorization, to eligible undocumented immigrants who came to the United States as children.
Deferred Action for Childhood Arrivals, 87 FR 53152 (August 2022).
