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If the fact that the United States has the highest maternal and infant mortality rates among comparable developed countries is not bad enough, the survival rates for African American mothers and their infants are even more dismal.¹ African American women across the income spectrum and from all walks of life are dying from preventable pregnancy-related complications at three to four times the rate of non-Hispanic white women,² while the death rate for black infants is twice that of infants born to non-Hispanic white mothers.³

Maternal mortality affects U.S. women from all backgrounds; if a woman is able to become pregnant, she risks experiencing complications such as preterm labor, infections, gestational diabetes, and even death due to her pregnancy. Among women who survive pregnancy and childbirth, 50,000 women each year experience life-threatening pregnancy-related complications⁴, also known as severe maternal morbidity (SMM). Discussions of the maternal health crisis in the United States often exclude this condition that disproportionately affects women of color, with African American women twice as likely to experience SMM compared with non-Hispanic white women.⁵ What’s more, African American mothers are twice as likely to have an infant who dies by their first birthday.⁶ Although other women of color also experience an elevated risk of poor outcomes—notably in American Indian and Alaska Native (AIAN) and some Latina communities—available data show that racial disparities between African Americans and non-Hispanic whites are the starkest.⁷

Pregnancy-related complications are closely tied to infant deaths as well. Nearly two-thirds of infant deaths occur during the first month after birth, often from congenital abnormalities and complications from preterm births.⁸ Preterm birth is a significant contributor to racial disparities in infant mortality.⁹ African Americans have the highest infant mortality rate of any racial or ethnic group in the United States, and higher rates of preterm births explain more than half of the difference, relative to non-Hispanic white women. AIAN and Puerto Rican women also have higher rates of infant mortality, and preterm births are a major driver for these groups as well.¹⁰

Disparities in maternal and infant mortality are rooted in racism. Structural racism in health care and social service delivery means that African American women often receive poorer quality care than white women. It means the denial of care when African American women seek help when enduring pain or that health care and social service providers fail to treat them with dignity and respect. These stressors and the cumulative experience of racism and sexism, especially during sensitive developmental periods, trigger a chain of biological processes, known as weathering, that undermine African American women’s physical and mental health.¹¹ The long-term psychological toll of racism puts African American women at higher risk for a range of medical conditions that threaten their lives and their infants’ lives, including preeclampsia (pregnancy-related high blood pressure), eclampsia (a complication of preeclampsia characterized by seizures), embolisms (blood vessel obstructions), and mental health conditions.¹²

Although racism drives racial disparities in maternal and infant mortality, it bears mentioning that significant underinvestment in family support and health care programs contribute to the alarming trends in maternal and infant health.¹³ In the past decades, many programs that support families in need—such as Medicaid, Temporary Assistance for Needy Families (TANF), and nutrition assistance—have experienced a steady erosion of funding, if not outright budget cuts.¹⁴ The fact that these cuts have a harmful impact on families of color, who are overrepresented in these programs due to barriers to economic opportunity in this country, can be attributed to structural racism.

Despite pervasive racial disparities in maternal and infant deaths, public attention has only recently focused on this issue as a public health crisis.¹⁵ And the full extent of the crisis is not yet known due to incomplete data.¹⁶ Compared with data on infant mortality, data on maternal mortality are less reliable and complete.¹⁷ While the disparities in maternal mortality across race are clear within individual states, a reliable national estimate has not been possible because data have been inconsistent and incomplete across states.¹⁸

Behind these statistics are the stories of individuals and families. To bring the United States in line with the rest of the developed world, policymakers and health care providers must work together to eliminate these disparities.

This report provides a comprehensive policy framework to eliminate racial disparities in maternal and infant mortality. Too often, policy conversations about maternal and infant health take place separately despite the interdependence of pregnancy and birth outcomes. This report attempts to bridge that gap by considering solutions that address racial disparities in both maternal and infant mortality.¹⁹ The authors outline policy strategies in five areas and make the following recommendations to address the ongoing threat to African American mothers and their infants:

• Improve access to critical services:
  • Strengthen existing health programs and support reproductive health care.
  • Screen and treat women at risk for preterm birth.
  • Eliminate maternity care deserts.
  • Offer African American women tools to navigate the health care system.

• Improve the quality of care provided to pregnant women:
  • Train providers to address racism and build a more diverse health care workforce.
  • Create standardized assessments for mothers and infants.
  • Adopt new models of care and link payment to quality.

• Address maternal and infant mental health:
  • Identify barriers to accessing maternal mental health services.
  • Dismantle care barriers with a comprehensive approach.
  • Screen for and address infant and early childhood mental health issues.

• Enhance supports for families before and after birth:
  • Invest in and expand access to policies and programs that support families’ basic needs.
  • Invest in community programs that offer one-stop comprehensive services.
  • Simplify enrollment across public benefit programs.
  • Invest in home visiting.
  • Fund community-based education and communications initiatives to support families.

• Improve data collection and oversight:
  • Standardize birth and death certificate data.
  • Mandate and fund fetal and infant mortality review committees.
  • Ensure equity in the review process.

Authors’ note: Because of the significant number of acronyms used throughout this report, the authors have included an alphabetical listing in the appendix.

How racism impacts health care and maternal and infant health

The maternal and infant mortality crisis cannot be adequately addressed without first understanding and then dismantling racism and bias in the health care system. African Americans have endured hundreds of years of racism in this country. This has occurred within the various systems and institutions that are part of American society—of which the health care system is just one. Racism, not race itself, is the driving force behind disparately high rates of maternal and infant deaths among African Americans, and the systemic barriers are fueled by both explicit and implicit bias.

For African Americans, the social determinants of health—including income level, education, and socio-economic status—are not protective factors as they are for white Americans when it comes to maternal and infant mortality. Social determinants of health are conditions that affect the health and quality of life of people in a given environment, including where a person lives, earns, works, or plays.²⁰ Racism is part and parcel of being black in the United States, and it compromises the health of African American women and their infants. Applying a racial justice lens to contextualize this urgent public health crisis is critical. Put simply, structural racism compromises health.²¹

Structural racism is defined as a system where public policies, institutional practices, and cultural representations work to reinforce and perpetuate racial inequity.²² It is fueled by predominantly white power structures that perpetuate power imbalances among people of color. Policy solutions to the maternal and infant mortality crisis must be grounded in social justice frameworks that are intentionally designed to address these power imbalances.²³ One such framework is reproductive justice, which is a human rights-based structured approach that addresses the intersecting systems of oppression that prevent marginalized women, primarily women of color, from achieving complete bodily autonomy and parenting with dignity.²⁴ Reproductive justice recognizes that a woman’s ability to determine her reproductive destiny is linked to the conditions in her community, including her access to health care, affordable housing, economic opportunity, and other factors. Policy solutions, therefore, must prioritize communities of color and their realities to fully address racial disparities in maternal and infant mortality.²⁵

Racism in health care can also manifest in other structural forms. This can include the concentration of people of color in communities that lack quality health facilities and providers; harsh environmental factors and toxins in predominantly African American neighborhoods;²⁶ inequality in the workplace; highly concentrated food insecurity within communities of color;²⁷ or draconian policy changes to health care programs that disproportionately serve people of color, such as Medicaid.

It should be noted that bias related to other social factors such as education level, income, sexual orientation, disability, and immigration status can also negatively affect patients’ experiences in health care settings as well as their health outcomes.²⁸ Furthermore, the intersectionality²⁹ of racism and sexism often result in women of color, particularly African American, Latina, AIAN, and Asian and Pacific Islander women, consistently reporting experiencing bias and discrimination based on their race and gender in health care settings.^{30 31} This compounded discrimination results in women, but especially women of color, feeling invisible or unheard when asking medical providers for help and when expressing issues with pain or discomfort during and after the birthing process.³²

This report focuses on women and experiences of discrimination and health disparities at the intersection of race and gender. However, not all pregnant people identify as women, and transgender and nonbinary people face unique barriers to accessing quality health care. The authors recognize that the research reviewed here may not adequately make the distinction between cisgender and transgender women or recognize intersex people or people with nonbinary identities. This is partially due to the lack of available research that focusses on the pregnancy and parenting experiences of these populations. For the purposes of this paper, the authors focus their discussion on a robust body of research that predominantly refers to their participants as “women.” The pregnancy and parenting experiences of transgender people, intersex people, and people who identify as nonbinary deserve more expansive future study and targeted interventions to eliminate barriers and improve the health of these communities.

The detrimental impact of racism on African American women’s mental, emotional, and physical health throughout the lifespan is well documented.³³ It can also have deleterious effects on the health of their infants and families.³⁴ Health disparities across maternal and infant health conditions, including maternal mental health, sudden infant death syndrome (SIDS), sudden unexpected infant deaths (SUID),³⁵ and cesarean section deliveries (C-sections), shed a light on how structural racism and bias can impact health outcomes. SIDS/SUID is one of the leading causes of infant mortality in the United States, and C-section deliveries are associated with higher rates of maternal mortality and severe maternal morbidity.³⁶ In 2017, the C-section rate for black women was 36 percent compared to 30.9 percent for non-Hispanic white women. And, in 2013, the SIDS/SUID rate for black women was about twice as high as that of non-Hispanic white women. Underinsurance and the lack of hospitals and facilities offering quality maternity and neonatal care in underserved communities are also key factors in these disparities.³⁷

The sections that follow discuss policy recommendations to address structural racism in the health care and family support systems. Some of these recommendations are designed to rectify structural racism, while others provide additional supports and services to pregnant women and new mothers to ameliorate the impact that racism has on their respective experiences. Recommendations include strengthening existing health programs that largely serve communities of color, such as Medicaid and the Children’s Health Insurance Program (CHIP); eliminating maternity care deserts; training health care providers to address racism and building a more diverse workforce; identifying barriers to accessing maternal mental health services; investing in community programs; as well as a host of others. In all cases, acknowledging racism as the underlying cause of maternal and infant deaths is critical to finding policy solutions that can effectively eliminate racial disparities. To adequately address the legacy and impact of racism, policy solutions should follow the theory of targeted universalism—an equity framework that employs targeted strategies to achieve a universal goal. This framework allows policy solutions to meet the needs of all populations—but have an intentional focus on those most in need—African American women and families. ³⁸

Ensuring access to comprehensive, affordable, high-quality health care is vital in the effort to eliminate racial disparities in maternal and infant mortality. In doing so, policymakers should prioritize underserved populations, including women and infants of color, low-income communities, and those living in rural and medically underserved areas. Lack of access to both quality, affordable health care and insurance coverage fuel poor health outcomes and racial and ethnic health disparities. This section focuses on strengthening the existing health care system and ensuring quality care both in terms of health care outcomes and in treating patients with dignity—recognizing and respecting their autonomy and expertise related to their own experience.

Strengthen existing health programs and support reproductive health care

Policymakers must work to strengthen the various parts of our nation’s health care system—especially Medicaid, the Affordable Care Act (ACA), and CHIP—that provide health care coverage to millions of women and their children. Not only is comprehensive, affordable health care coverage important throughout women’s lives, but it is also particularly critical to their health during pregnancy and after the birth of a child. Furthermore, when a woman has coverage of and access to maternity care, the positive health impacts can be long lasting to both her and her child.³⁹ Without health care coverage, a woman may forgo the routine prenatal and postnatal care that is needed to identify health risks and prevent complications. According to reports from maternal mortality review committees (MMRCs) in partnership with the Centers for Disease Control and Prevention (CDC) Foundation, about 60 percent of maternal deaths are preventable.⁴⁰ And among the most common conditions associated with maternal mortality, the percentages are even higher—cardiovascular and coronary conditions are 68 percent preventable, and hemorrhage is 70 percent preventable.⁴¹

Access to maternity care, family planning, and other reproductive health care services is central to the constellation of services women need in order to have healthy pregnancies. Abortion and contraceptive coverage must be supported through both public and private sources of health insurance that are void of harmful funding restrictions or other measures that complicate a woman’s ability to obtain comprehensive reproductive health care. Studies show that when women experience an unintended pregnancy and are forced to carry an unplanned pregnancy to term, they are likely to delay prenatal care.⁴² This can result in poor maternal and infant health outcomes. A woman’s ability to choose if, when, and how to give birth is inextricably linked with her overall health and well-being; her economic security; and her educational attainment.⁴³

A crucial source of health insurance for pregnant women and mothers is Medicaid, a joint state and federal government funded program that provides health care coverage to millions of low-income Americans— 25 million of whom are women.⁴⁴ The program covers almost half of all births in the country. And, in some states, the program covers more than half of births.⁴⁵ Under the traditional Medicaid program, federal law requires states to provide pregnant women who have family incomes up to 138 percent of the federal poverty level (FPL) with pregnancy-related services through 60 days postpartum.⁴⁶ These services are limited to prenatal care, delivery, postpartum care, and family planning. Many states voluntarily cover these services for women whose incomes exceed the 138 percent threshold.⁴⁷

However, states are not required to provide full Medicaid benefits under this eligibility pathway—which includes comprehensive coverage for all medically necessary services—to pregnant women and can limit their coverage to pregnancy-related services. As a result, a woman eligible for traditional Medicaid may receive services that vary widely from state to state depending on her eligibility pathway. Furthermore, certain pregnant women may also qualify for full Medicaid benefits if they meet other eligibility requirements.⁴⁸

The ACA drastically improved coverage for women—including pregnant women—by expanding Medicaid eligibility to all adults with incomes up to 138 percent of the FPL. States that chose to expand their Medicaid programs must include coverage for essential health benefits as part of the benefits for the pregnancy pathway (although this is not necessarily true for other eligibility groups). The ACA statute required states to expand their programs to include this new eligibility category. But following the Supreme Court’s 2012 decision on the constitutionality of key provisions of the ACA, Medicaid expansion was made optional for the states.⁴⁹ To date, 33 states and the District of Columbia have adopted Medicaid expansion.⁵⁰

The ACA also expanded presumptive eligibility, which allows women to access needed care more quickly. As part of the ACA, Medicaid (as well as other plans participating in state health insurance exchanges) must cover 10 essential health benefits, including mental health services, chronic disease management, contraception, maternity and newborn care, and pediatric services for the expansion population.⁵¹ States must also cover certain maternity benefits such as prenatal visits, screenings, folic acid supplements, and breastfeeding supports and equipment rental, which must be provided with no cost sharing.⁵²

These services provide important supports to mothers and infants. Management of chronic disease ensures women receive ongoing treatment, minimizing the risk these conditions may pose throughout and after their pregnancy. Increased access to contraception helps avoid unplanned and often high-risk pregnancies. And guaranteed coverage of pregnancy and maternal care ensures women can access care that has been proven to lower the incidence of risk factors such as low birth weight and early term births. Taken together, the benefits of comprehensive health care have the potential to significantly improve women’s health before and during pregnancy, which can greatly impact infant mortality.

Research shows that Medicaid expansion indeed saves lives; a study from the American Journal of Public Health found that Medicaid expansion states saw infant mortality rates decline, with the greatest decline among African American infants. ⁵³ Using the same data source, the Center for American Progress estimates that expanding Medicaid in nonexpansion states would avert 141 infant deaths per year.⁵⁴ In the 17 states that have yet to fully expand their Medicaid programs, remaining restrictions on coverage and eligibility prevent pregnant women and new mothers from gaining the full benefits of health care coverage. At a minimum, federal law should require states to cover new mothers who receive coverage through the limited pregnancy pathway beyond 60 days postpartum to at least one year after giving birth and should require coverage for full Medicaid benefits during this period.⁵⁵ These steps will increase access to comprehensive health care during an important time for new mothers. In particular, new mothers of color stand to gain both health and economic benefits from this extension of care. Because women of color are more likely to be covered by Medicaid, which covers almost half of all births in the United States, the program is essential to addressing racial disparities in maternal and infant mortality.

Loss of insurance coverage before and after childbirth is another factor that can adversely impact maternal and infant health outcomes. Coverage loss was a common and persistent occurrence prior to implementation of the ACA.⁵⁶ While half of uninsured women were able to obtain Medicaid or CHIP coverage by the month of delivery, 55 percent of women with this coverage became uninsured in the six months following delivery.⁵⁷ Women most affected by the discontinuation or loss of insurance coverage were typically the sole caregiver in their homes or low-income mothers; Medicaid or CHIP recipients; and residents living in the Southern United States—a region of the country where most states have not expand Medicaid.⁵⁸

After the implementation of the ACA, low-income women in expansion states who would otherwise have lost their eligibility for pregnancy-related Medicaid coverage became eligible to receive full Medicaid coverage. This led the uninsurance rate among new mothers (those who had given birth in the past year) in these expansion states to fall by 56 percent.⁵⁹ For new mothers residing in nonexpansion states, however, access to full Medicaid coverage was not as widespread, and the uninsurance rate only fell by 29 percent.⁶⁰ As of 2016, the difference in uninsurance rates between nonexpansion and expansion states was more than double—17.9 percent compared to 6.8 percent, respectively.⁶¹

CHIP is another vital insurance program that ensures pregnant women and their children who make up to 185 percent of the FPL have access to comprehensive health services, although most states exceed this threshold. CHIP covers children and pregnant women whose incomes are too high for Medicaid coverage, but for whom private health insurance may still be too expensive. CHIP benefits include comprehensive coverage for services such as routine checkups, immunizations, and dental and vision care, among others.