Reforming Medicaid Coverage Toward Reproductive Justice

Abstract

As the United States’ largest public health insurance program, Medicaid has since 1965 played a crucial role in the struggle for equitable health care access. It has the potential to be a powerful instrument of reproductive justice, yet discriminatory policies that deny coverage for vital sexual, reproductive, or other health services, or exclude entire populations of people with low incomes from coverage altogether, constrain peoples’ health and reproductive futures. Resulting discrimination in Medicaid law and policy thwart the program’s ability to promote intergenerational health equity and reproductive justice for underserved communities.

This Article provides an account of why reproductive justice is a necessary framework for examining, reimagining, and reforming Medicaid coverage law and policy. Part I gives a brief history and overview of reproductive justice, which serves as “an open source code that people have used to pursue fresh critical thinking regarding power and powerlessness.” Part II argues that we should utilize that open source code in Medicaid coverage reform. Using some of the reproductive justice movement’s critiques as a starting point, it explores how reproductive oppression has shaped Medicaid coverage law, policy, and mainstream reproductive and health care reform movements’ proposals, and to what effect. It argues that examining Medicaid law, policy, and proposed reforms through this lens and in collaboration with the reproductive justice movement can enable health advocates and policymakers to more fully understand, disrupt, and dismantle reproductive injustices that drive health inequities. Ultimately, it can empower reformers to build a more equitable public health insurance safety net that brings us closer to reproductive justice for all.

Introduction

“What does it mean when the tools of a racist patriarchy are used to examine the fruits of that same patriarchy? It means that only the most narrow parameters of change are possible and allowable.”

—Audre Lorde, The Master’s Tools Will Never Dismantle the Master’s House ¹

Since 1965, Medicaid has played a crucial role in the struggle for equitable health care access in the United States (U.S.).² As of July 2022, it provided lifesaving health coverage to over eighty-nine million people with low incomes, a majority of whom were people of color.³ Medicaid covers more than 40 percent of U.S. births, 65 percent of births for Black women and birthing people, and is the leading source of coverage for family planning services.⁴ As the country’s largest public health insurance program, it has the potential to be a powerful instrument of reproductive justice, “the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities.”⁵

To achieve that vision, advocates must confront the white supremacy, xenophobia, cisheteropatriarchy, ableism, and other systems of oppression “baked into the program.”⁶ From Medicaid’s inception, some policymakers have obstructed its potential as an instrument of reproductive justice by denying Medicaid beneficiaries coverage of vital sexual, reproductive, and other health services, and excluding certain populations with low incomes from coverage altogether.⁷ Resulting eligibility and benefit gaps systematically deny people meaningful self-determination over their health and reproductive futures and deepen already stark health inequities within and across generations.⁸ By design, these systematic denials of access to care fall hardest on people who live and experience compounded discrimination at the intersections of multiple non-dominant identities (e.g., undocumented immigrant women of color with low incomes).⁹ Discriminatory coverage laws and policies are instruments of reproductive oppression: the regulation and exploitation of people’s bodies, sexuality, labor, and reproductive capacities.¹⁰ Dominant health care and reproductive law and policy frameworks have yet to remedy these injustices.¹¹ Moreover, depending upon them may constrain the parameters of change.¹²

This Article provides an account of why reproductive justice is a necessary framework for examining, reimagining, and reforming Medicaid coverage law and policy.¹³ Part I gives a brief history and overview of reproductive justice, which serves as “an open source code that people have used to pursue fresh critical thinking regarding power and powerlessness.”¹⁴ I describe key principles of the framework and movement’s “source code” and explain how its “open” nature upends the hierarchical and exclusionary structures of mainstream health care and reproductive reform movements. Part II argues that we should utilize that open source code in Medicaid coverage reform. Using some of the reproductive justice movement’s critiques as a starting point, I explore how reproductive oppression has shaped Medicaid coverage law, policy, and mainstream movements’ reform proposals, and to what effect. I argue that examining Medicaid law, policy, and proposed reforms through this lens and in collaboration with the reproductive justice movement can enable health advocates and policymakers to more fully understand, disrupt, and dismantle reproductive injustices that drive health inequities. Ultimately, it can empower reformers to build a more equitable public health insurance safety net that brings us closer to reproductive justice for all.

Reproductive justice’s open source code

For countless years, women of color in the U.S. and abroad have organized to counter reproductive oppression.¹⁵ Their efforts flourished in the eighties as they formed organizations, beginning with the National Black Women’s Health Project, that organized around racial affinities, collaborated with one another, and partnered with other movements to advance shared aims.¹⁶ Their efforts came to a head in 1994, when the reproductive justice framework and movement emerged as a powerful critique of the ways in which mainstream reproductive and health care reform movements and policymakers were pursuing narrow agendas that failed people navigating reproductive oppression.¹⁷

Consider who was in power that year in the U.S. A white man, Bill Clinton, was President, the 42nd link in an unbroken chain of white men who had held the position since 1789. ¹⁸ A white woman, then-First Lady Hillary Clinton, led a taskforce comprised of mostly white men tasked with recommending a national health care reform plan to the President.¹⁹ White people, and especially men, held the overwhelming majority of seats in Congress.²⁰ White people, and particularly middle-class and wealthy white people, largely led mainstream reproductive and health care reform movements.²¹ They decided who qualified as an “expert,” to join their organizations, or to sit and be heard at coalition tables. White people disproportionately determined the substance of health care and reproductive policy reform and litigation agendas, which reflected their values, interests, and preferences. White people largely centered their own concerns and deprioritized the demands of women and people of color, who continue to be the primary targets of reproductive oppression. In response, women of color activists were increasingly and rightfully frustrated by the reproductive rights movement’s inadequate focus on individual “choice,” an inadequacy mirrored in Roe v. Wade’s negative rights approach, and neglect of persistent reproductive oppression.²² Likewise, they were dissatisfied with the direction of federal health care reform efforts.

Months after attending the International Conference on Population & Development in Cairo, twelve Black women gathered at the Illinois Pro-Choice Alliance Conference.²³ They discussed the need for a new analytical and organizing framework that would bridge reproductive rights and social justice.²⁴ Through that lens, they determined that the Clinton administration’s health care reform plan failed to connect health care access, decisions to parent or not parent, and intersecting social justice issues.²⁵ It avoided abortion and other reproductive health care altogether. They decided to respond.

On August 16, 1994, the group, called Women of African Descent for Reproductive Justice, published a full-page letter to Congress in Washington Post and Roll Call. ²⁶ In their letter, “Black Women on Health Care Reform,” they called for universal, comprehensive, and affordable health coverage and access, with strong nondiscrimination protections, for everyone. They expressed the urgent need for equitable access to all health services, including diagnostic, treatment, preventive, long-term care, mental health services, prescription drugs, and care for pre-existing conditions. They would “not endorse a health care reform system that does not cover the full range of reproductive services for all women—including abortion.”²⁷ They emphasized that the U.S. would not achieve these goals until Black women had meaningful representation on national, state, and local planning, review, and decision-making bodies. Nearly 850 Black women signed on.²⁸

The Women of African Descent for Reproductive Justice had forged a groundbreaking analytical, organizing, and movement-building framework that would alter the course of reproductive politics in the U.S.²⁹ To understand how it has and will continue to do so, consider movement co-founder Loretta Ross and historian Rickie Solinger’s metaphorization of reproductive justice as an “open source code” for pursuing new critical thinking about power and powerlessness.³⁰ Software programmers write instructions, known as “source code,” for computers to execute.³¹ Like many mainstream and largely white-led legal and policy reform spaces, the mainstream “software social system” features a top-down, hierarchical model of development.³² Under this system, source code is proprietary, so users must purchase licenses that prohibit redistribution or derivative work.³³ When source code is “open,” it is freely available and open to all for use and participatory iteration.³⁴ As legal scholar Eben Moglen writes, this participatory, inclusive, and anti-hierarchical approach harnesses “extraordinary quantities of high-quality effort for projects of immense size and profound complexity,” resulting in products that have outperformed commercial proprietary counterparts developed under dominant frameworks.³⁵ This Part provides an overview of reproductive justice’s source code.

At its core, reproductive justice is the human right to (1) maintain bodily autonomy; (2) parent; (3) not parent; and (4) parent current children in safe, sustainable, and healthy communities.³⁶ Securing this right requires that we restructure society so that “all people have the economic, social, and political power and means to make decisions about their bodies, sexuality, health, and family, with dignity and self-determination.”³⁷ This necessitates government and institutional redress for historical and persistent reproductive oppression.³⁸ It also requires accountability for reproductive justice’s enabling conditions across the myriad of interconnected social justice and human rights issues that affect peoples’ bodies, sexuality, and reproduction.³⁹

Reproductive justice’s holistic analysis of reproductive oppression and inseparable social injustices recognizes that health and reproductive destinies are a product of much more than individual-level behaviors, legal rights to choose to receive abortions, or innate biology.⁴⁰ Some reproductive justice advocates have employed the ecosocial theory of disease distribution’s construct of embodiment to examine societally structured imbalances in power and resources that shape intergenerational inequities.⁴¹ Ecosocial theory posits that we biologically incorporate our socioecological context (e.g., unstable or unhealthy housing, health care discrimination, food apartheid), creating in emergent embodied phenotypes that shape our health.⁴² This includes historically contingent sociopolitical exposures to reproductive oppression, such as white domination over Black women’s wombs to sustain chattel slavery, the genocide of Indigenous communities, and post-Reconstruction era “Jim Crow” laws.⁴³ It also includes present day maternity care apartheid, proliferating state bans on abortion and gender-affirming care, and deeply entrenched medical racism.⁴⁴

Together, these embodied injustices shape pregnancy and parenting options, experiences, outcomes, and inequities.⁴⁵ They also manifest as current and changing population-level patterns of disease distribution, including health inequities.⁴⁶ For example, a study of live births from 2005–2018 found that historic redlining by the Home Owners’ Loan Corporation was associated with preterm birth prevalence.⁴⁷ Researchers observed the lowest preterm birth rate in the zip code that the HOLC historically defined as “Best” or “Still Desirable,” and the highest overall birth rate in the zip code historically defined as “Hazardous.”⁴⁸ Periviable birth rates were 3 times higher in “Hazardous” versus “Best” or “Still Desirable” neighborhoods. Another study on women diagnosed with breast cancer found that a Jim Crow state birthplace was associated with increased odds of estrogen-receptor negative breast cancer only for Black, but not white, women, with the strongest effect observed for Black women born before 1965.⁴⁹

Reproductive justice employs intersectionality, an integrated power analysis and practice, to understand, challenge, and guide equitable responses to the “matrix of domination” that structures our society in this way.⁵⁰ Systems of domination, such as white supremacy, cisheteropatriarchy, xenophobia, ableism, and classism, privilege dominant populations’ (i.e., white, higher-income, cisgender male, non-disabled individuals born in the U.S.) access to the resources and conditions necessary to support their health, wealth, and wellbeing at others’ expense. Intersectional theory emphasizes that these systems of domination are not “mutually exclusive categories of experience and analysis[,]” but rather mutually reinforcing.⁵¹ People who live at the intersections of multiple nondominant identities experience compounded oppression which, in turn, shapes the conditions of peoples’ lives.⁵² For example, a Black transgender immigrant might be subjected to compounded anti-Blackness, transphobia, and xenophobia in obstetric care.⁵³ Intersectional analysis also addresses power inequities within and across societal spheres (e.g., interpersonal, community, and political) and scales (e.g., local to global governance), time, and space.⁵⁴

While “dominant conceptions of discrimination condition us to think about subordination as disadvantage occurring along a single categorical axis” in the matrix of domination (e.g., structural racism), the experiences of people with intersectional identities, such as Black women, cannot be compartmentalized.⁵⁵ Addressing only a single axis limits inquiry to “the experiences of otherwise-privileged members of the group[,]” creating a distorted and incomplete power analysis and agenda for remediation.⁵⁶ Such an approach erases the experiences of people multiply burdened by oppression and marginalizes them “within the very movements that claim them as part of their constituency[.]”⁵⁷ Ultimately, it makes exacting goals such as eradicating racism, cisheteropatriarchy, and ableism even harder to achieve.⁵⁸ Intersectional theory offers an alternative path: we must center the intersectional experiences and concerns of the constituencies who are most disadvantaged by reproductive oppression and other inseparable injustices and “remak[e] the world where necessary.”⁵⁹

Like “open” source code, reproductive justice’s “openness” is essential to achieving that vision. The movement’s key strategies include grassroots mobilization and movement building to organize “from the margins to the center, rather than from the bottom to the top” to center the concerns and build the power of women of color and other communities most burdened by reproductive oppression.⁶⁰ It is also open in the sense that it seeks to build a network of allied social justice and human rights organizations who will incorporate a reproductive justice lens into their efforts.

Adopting reproductive justice’s source code requires more than analytical engagement; it demands the examination and reimagination of mainstream advocacy and policymaking processes and power structures.⁶¹ As is true for the interconnected health justice movement, “[t]hese efforts cannot be led by communities who have benefited from the very forms of subordination that must be dismantled if … justice is to be achieved. Empowering these communities in decision-making processes helps ensure that the design and implementation of interventions intended to benefit them are … tailored to their needs.”⁶² The communities who are closest to reproductive oppression are closest to the solutions.⁶³

Medicaid coverage through a reproductive justice lens

From its inception in 1994, a key aim of the reproductive justice movement has been securing universal access to equitable, affordable, truly comprehensive, and culturally and linguistically appropriate health care that is free from reproductive coercion and other discrimination.⁶⁴ Nearly thirty years later, reproductive justice advocates continue to fight for a universal health care system that reflects movement values. Simultaneously, many are steeped in efforts to end manifestations of reproductive oppression that plague our existing health care system, including in Medicaid.

Medicaid is the U.S.’ public health insurance program for people with low incomes. Congress established the program in 1965 through Title XIX of the Social Security Act (i.e., the Medicaid Act).⁶⁵ The program is jointly funded and administered by the federal and state governments.⁶⁶ While state participation in Medicaid is optional, all states participate, and thus must comply with federal legal requirements for eligibility, benefits, procedural due process, and consumer protections.⁶⁷ Federal eligibility and benefit minimums provide crucial coverage and protections to millions, often exceeding what private insurance would provide, but they also fall short of ensuring that all people with low incomes have health insurance, or that beneficiaries receive truly comprehensive coverage inclusive of the full range of sexual and reproductive health services.⁶⁸ Federal law extends states various options to exceed its minimums, yet uptake is uneven.⁶⁹ All states cover some optional services and many cover optional populations.⁷⁰ A minority even use their own funds to expand coverage beyond the scope of what the federal government will help cover.⁷¹ Other states have violated federal Medicaid coverage requirements for decades and are now banning essential services outright.⁷² Taken together, federal and state Medicaid coverage policies simultaneously work in opposition to and in service of reproductive oppression and resulting health inequities.

This Part provides an account of why reproductive justice is a critical and necessary framework for examining and meaningfully remedying these challenges. Methodologically, I use the reproductive justice movement’s critiques of Medicaid coverage law and policy as a starting point for asking broader questions not often raised by mainstream movements about how we fail to address sources of reproductive oppression and thus health inequities in our public health insurance safety net. In Part II.A, I explore examples of how patchwork Medicaid eligibility restrictions and resulting exclusions devalue the future health, wellbeing, and autonomy of people with low incomes, and especially Black, Latinx, and other people of color, immigrants, and people who experience compounded oppression at the intersections of multiple nondominant identities. In Part II.B, I discuss gaps in Medicaid’s sexual and reproductive health coverage. I begin with a brief overview of Medicaid-covered services. Drawing on examples of gaps in abortion and pregnancy-related benefits, I discuss how vast benefit gaps and state violations of scant existing requirements disempower populations from making decisions about their reproductive fates and reinforce health and health-related social inequities within and across generations. I describe how some movement actors are approaching reform, and why Medicaid advocates and policymakers should take this approach seriously.

Reimagining eligibility

To be eligible for Medicaid, a person must fit into a covered eligibility category, have an income below the limit for that category, be a resident of the state in which they are applying, and either be a U.S. Citizen or meet strict immigrant eligibility requirements.⁷³ These requirements mean that Medicaid does not reach all underserved communities with low incomes who lack meaningful access to health coverage. That is by design.

Medicaid eligibility has always been shaped by white supremacist notions of which people are worthy of access.⁷⁴ Amid mounting Civil Rights-era fights for federal health care reform, many white members of Congress from Southern States and the American Medical Association (AMA) sought to extinguish growing interest in a national health insurance program.⁷⁵ While the AMA initially opposed early renditions of or even a limited Medicaid proposal, it soon championed it as an alternative to national health insurance that would build on the foundation of earlier public assistance programs and cover only the “worthy poor.”⁷⁶ Ultimately, Medicaid’s architects adopted that approach, designing the program’s basic structure to make state participation optional and expand coverage to specific categories of people.⁷⁷ In doing so, Congress ceded coverage decisions to the states, empowering them to lock certain low-income populations out of the public health insurance safety net and thus, perpetuate racial and broader health inequities.

White policymakers and other political actors have long propagandized notions of worthiness for Medicaid through racially coded mythologies, such as “welfare queens,” “anchor babies,” and the possibility of simply pulling oneself up by one’s bootstraps.⁷⁸ In the past, these notions spurred injustices such as the compulsory sterilizations of Black, Indigenous, and other people of color in exchange for Medicaid and other social safety net access, and disproportionately higher sterilization rates for Medicaid beneficiaries, particularly Black women, than non-recipients.⁷⁹ Today, they underpin a health insurance safety net riddled with patchwork eligibility categories that are rooted in value-based judgements about excluded populations’ worthiness. This approach creates coverage gaps that deny some populations with non-dominant identities a crucial means of self-determination over their health, bodies, and reproductive futures. Coverage gaps resulting from state refusals to expand Medicaid, limited-duration pregnancy-related coverage, and federal restrictions on immigrant eligibility are illustrative. As this Part discusses, reforming Medicaid to close these gaps and extend eligibility to all people with low incomes, regardless of where they live or their pregnancy or immigration status, will bring the country closer to universal health coverage and with it, reproductive justice and health equity.

Medicaid expansion

The Patient Protection and Affordable Care Act’s (ACA) framers designed Medicaid expansion to help secure their goal of near-universal health coverage. As drafted, the law required that all states participating in Medicaid expand eligibility to a new category of adults with incomes effectively up to 138 percent of federal poverty level (FPL) who are not pregnant or otherwise ineligible under federal law.⁸⁰ The Supreme Court issued a catastrophic blow in NFIB v. Sebelius when it enabled states to decide whether to implement expansion.⁸¹ As of November 2022, thirty-nine states and the District of Columbia (D.C.) adopted Medicaid expansion, narrowing racial and other inequities in health coverage, access to care, and health outcomes for nearly 17 million newly eligible adults, as well as their children.⁸² Meanwhile, eleven states refuse to expand coverage to the millions of people Congress intended to cover, despite generous financial incentives to do so.⁸³

The political choice to refuse to expand Medicaid is rooted in the same structural racism that produced chattel slavery and Jim Crow and similarly.⁸⁴ Nearly all people in the resulting “Medicaid coverage gap” live in the South.⁸⁵ Black, Latinx, or other people of color disproportionately fall into the coverage gap.⁸⁶ Two-thirds of uninsured women of reproductive age in the gap are people of color.⁸⁷ One in three people in the gap are parents with children at home.⁸⁸ Non-expansion operates as an instrument of reproductive oppression for these populations. Some anti-choice state lawmakers and advocates have openly opposed Medicaid expansion in part because it would mean more people would have some, albeit extremely limited, abortion coverage.⁸⁹ Non-expansion also withholds coverage for contraceptives; care for endometriosis, which can complicate fertility, and other chronic conditions; disability services that help parents with children at home remain in their communities; and primary care services that address a wide range of needs, all of which help people realize their reproductive, educational, economic goals.⁹⁰ State refusals to expand Medicaid not only harm the health, reproductive autonomy, and economic security of people in the coverage gap, but also the health and development of their children, which depend “in part on their parents’ health and [wellbeing].”⁹¹

Expansion refusals are especially violent amid a slew of public health crises that disproportionately harm communities of color and other underserved communities.⁹² For example, the U.S. has the worst maternal mortality rate among high-income countries and is one of only two countries to report a significant increase in their maternal mortality ratio since 2000.⁹³ More than half of maternal deaths occur after the date of delivery, and twelve percent happen between forty-three and 365 days postpartum.⁹⁴ Because of structural racism, Black and Indigenous women and birthing people are dying at exponentially higher rates than white people.⁹⁵ The overwhelming majority of pregnancy-related health complications and deaths are preventable.⁹⁶ This status quo stems from societally structured imbalances in access to power and resources (e.g., comprehensive health coverage before, during, and after pregnancy free from discrimination; stable and healthy housing; clean water; a living wage) that effect maternal health.⁹⁷ The persistence of these unjust imbalances is a political choice.

As the largest payer of pregnancy-related care and payer for sixty-five percent of Black births in the U.S., Medicaid is an important battleground for improving maternal health outcomes and equity.⁹⁸ Medicaid coverage rates before pregnancy and postpartum are significantly lower in non-expansion states.⁹⁹ While some individuals will qualify for limited-duration coverage once they become pregnant, forcing them to wait until then to apply may postpone coverage and thus, prenatal care.¹⁰⁰ It may also delay the diagnosis and treatment of preexisting conditions that can complicate pregnancies until after people become pregnant, jeopardizing maternal and infant health.¹⁰¹ Ultimately, people, and especially Black women, in the coverage gap experience higher rates of severe maternal morbidity and mortality than their counterparts in expansion states.¹⁰² Likewise, their infants, and especially Black infants, experience higher rates of mortality.¹⁰³

Non-expansion also denies residents preventive, diagnostic, and treatment services for chronic conditions, with serious ramifications for their health, fertility, and reproductive futures.¹⁰⁴ For example, non-expansion is a key obstacle to ending the Southern HIV epidemic, which disproportionately affects Black people and families.¹⁰⁵ Ultimately, state refusals to expand Medicaid undermine health equity and reproductive justice and are responsible for tens of thousands of preventable deaths each year.¹⁰⁶

These health outcomes and inequities have informed advocates’ calls on Congress to close the Medicaid coverage gap by providing federally administered fallback coverage.¹⁰⁷ In 2021, lawmakers considered approaches such as constructing a federal Medicaid look-alike program or providing marketplace coverage retrofitted with certain enhancements to mirror some of Medicaid’s features that exceed qualified health plan requirements (e.g., adding Medicaid’s non-emergency medical transportation benefit and more robust family planning benefit). Unfortunately, specific legislative proposals largely fell short of matching Medicaid’s comprehensive benefits, procedural due process, and other consumer protections.¹⁰⁸ Moreover, they often lacked adequate protections to ensure that current Medicaid expansion states would not abandon their expansions. If enacted, a federal fallback that does not equitably close the gap across these various dimensions could set a dangerous precedent for a future Congress to lower Medicaid’s standard of coverage for people with low incomes.¹⁰⁹ In order to equitably close the gap and address related reproductive injustices, Congress must invest in a truly comprehensive and equitable solution that also safeguards the existing public health insurance safety net.

Eligibility for pregnant people

From 1984 to 1990, Congress expanded Medicaid eligibility for pregnant people with low incomes through new mandatory and optional eligibility groups.¹¹⁰ The Medicaid Act requires that states provide Medicaid coverage with full-scope benefits to qualified pregnant women with household incomes below the state’s income threshold as of May 1, 1988 for the former Aid to Families with Dependent Children (AFDC) program.¹¹¹ In addition, if a pregnant person’s household income exceeds that income threshold, they may be eligible for “pregnancy-related Medicaid” coverage.¹¹² States are required to provide people in this latter eligibility category with services related to their pregnancy.¹¹³ Coverage only lasts through the end of the month in which the sixty-day period (beginning on the last day of a pregnancy) ends, long before many of the complications that result in pregnancy-related morbidity or mortality manifest.¹¹⁴ The law does not go nearly far enough to protect postpartum people. Its cutoff at roughly sixty days after a pregnancy ends leaves open a gap in coverage that directly contributes to our Black maternal mortality epidemic.¹¹⁵ This gap can be gravely dangerous for people with low incomes with complex health and health-related social needs.¹¹⁶ It subjects people with low incomes and their families to unjust financial strain that can harm intergenerational health and reproductive futures.¹¹⁷ Ultimately, it reinforces and perpetuates racism and broader social inequities in health care and beyond.¹¹⁸

In 2021, the American Rescue Plan Act (ARP) created a crucial temporary state plan amendment (SPA) option to extend pregnancy-related Medicaid and Children’s Health Insurance Program (CHIP) coverage to full-scope benefits for a full year after pregnancies end.¹¹⁹ As of October 27, 2022, the U.S. Centers for Medicare & Medicaid Services (CMS) approved twenty-six states and D.C.’s proposals to take up the option, granting roughly 418,000 people a full twelve months of continuous coverage after their pregnancies end.¹²⁰ While these states have made important progress toward maternal health equity, experience with other optional Medicaid eligibility categories suggests that recalcitrant states could postpone adopting the SPA for years, withholding lifesaving coverage with tragic results.¹²¹ Moreover, the SPA is set to sunset after just five years.¹²² Recognizing these harsh realities, the Black Maternal Health Federal Policy Collective and other reproductive justice advocates have led efforts to press Congress to extend the federally required minimum duration of pregnancy-related Medicaid coverage to at least twelve months after pregnancies end.¹²³

Immigrant eligibility

For centuries, the U.S. has regulated and restricted immigrants’ self-determination over their health, bodies, reproduction, families, and futures.¹²⁴ In 1996, the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) continued this ugly tradition when it dramatically narrowed eligibility for Medicaid, CHIP, and some other public benefits to U.S. citizens, immigrants admitted under enumerated, mostly humanitarian, classifications, and people who have been lawful permanent residents (LPRs) for at least five years.¹²⁵ PRWORA’s “five-year-bar” forces LPRs to wait years before they can access Medicaid and other specified public benefits, and the law excludes undocumented immigrants from these programs outright.¹²⁶

While Congress has largely excluded immigrants from health care reforms designed to further near-universal health coverage, it has authorized states to cover certain populations.¹²⁷ The CHIP Reauthorization Act of 2009 granted states options to provide Medicaid and CHIP coverage to lawfully residing pregnant people or children without a five year waiting period.¹²⁸ As of January 2022, twenty-five states covered lawfully residing pregnant people and thirty-five states covered lawfully residing children under these options.¹²⁹ Another 2002 regulation inadvertently created an “unborn child” CHIP SPA option that enables states to cover prenatal and labor and delivery services for undocumented people when their fetus is the beneficiary.¹³⁰ As of January 1, 2022, eighteen states adopted this option.¹³¹ While this loophole has enabled states to provide vital coverage to undocumented immigrants who are pregnant, limiting the scope of covered services to those for which the fetus is the beneficiary arguably relegates pregnant people to mere fetal vessels by excluding crucial services necessary to support maternal health, such as cancer treatment.¹³² Moreover, federal law requires that all states provide “emergency Medicaid” to uninsured people who are not eligible for Medicaid based on their immigration status.¹³³ Emergency Medicaid provides coverage for services necessary to treat emergency medical conditions other than organ transplants, such as labor and delivery, yet it does not cover non-emergency care for life-threatening conditions.¹³⁴

While these limited coverage requirements and options enable critical coverage for some, PRWORA leaves millions of immigrants without any health coverage whatsoever, undermining access to care and harming intergenerational health outcomes. By 2001, five years after the law’s enactment, Medicaid coverage had decreased by almost half among recent and longstanding resident immigrant women, the latter of whom were still Medicaid-eligible.¹³⁵ As of 2019, immigration-related restrictions barred 4.3 million income-eligible noncitizens, particularly Latinx and Asian people, parents, and workers, from full-scope Medicaid.¹³⁶ Today, immigrant women are less likely to have health coverage and use sexual and reproductive health services than women born in the U.S.¹³⁷ This not only undermines the health and wellbeing of immigrants with low incomes, but it also affects their children’s health.¹³⁸

While mainstream federal health care reform efforts have largely failed to address these inequities, reproductive justice advocates and allies have long fought to dismantle their sources in discriminatory health and immigration policies like PRWORA. Groups such as the National Latina Institute for Reproductive Justice, National Asian Pacific American Women’s Forum, and Unite for Reproductive & Gender Equity have provided crucial leadership on movement-building, organizing, and advocacy to restore and expand full-scope Medicaid, including sexual and reproductive health services, to immigrants regardless of status.¹³⁹ Federal reforms to ensure that all immigrants with low incomes can access Medicaid coverage are urgently needed to alleviate interconnected health inequities and reproductive injustices.¹⁴⁰

Reimagining benefits

In principle, Medicaid is designed to comprehensively address the complex health care needs of people with low incomes, who are more likely to have a substantial mix of chronic, behavioral, and acute health conditions or disabilities and experience societal barriers to access compared to people with higher incomes.¹⁴¹ The program includes many specially tailored health benefits, consumer protections, and other features that marketplace and other private health plans do not provide.¹⁴² For Medicaid beneficiaries eligible for full-scope benefits, states are required to cover a range of benefits, from the more general (e.g., physician services, inpatient and outpatient hospital services) to the population specific (e.g., home health and nursing facility services for beneficiaries with disabilities; Early and Periodic Screening, Diagnostic, and Treatment services designed specifically for children and youth under age 21).¹⁴³ States must also cover certain sexual and reproductive health services: family planning services and supplies, certain pregnancy-related services, and limited abortions.¹⁴⁴ States must also cover non-emergency medical transportation, which addresses the significant transportation barriers to care that people with low incomes face, as well as services at federally qualified health centers and rural health clinics, safety net providers that provide care tailored to the health and health-related social needs of underserved communities.¹⁴⁵

Federal law also enables states to receive federal financial matching funds for optional services, including some related to sexual and reproductive health.¹⁴⁶ For example, all states, territories, and D.C. cover Medicaid’s optional outpatient prescription drug benefit.¹⁴⁷ Consequently, they must also cover, with few limited statutory exceptions, Food and Drug Administration (FDA) approved drugs from all manufacturers that participate in the Medicaid Drug Rebate Program, such as Truvada (i.e., pre-exposure prophylaxis treatment for HIV prevention), Mifeprex (part of the only FDA-approved medication abortion regimen), and other prescription drugs crucial to sexual and reproductive health and justice.¹⁴⁸ Some states use their own funds to cover sexual and reproductive health services that are currently ineligible for federal matching funds.¹⁴⁹

Despite these options, many state Medicaid programs lack or even expressly exclude vital sexual and reproductive health services, such as gender-affirming care and assisted reproduction.¹⁵⁰ Inadequacies in federal coverage requirements for sexual and reproductive health services and state violations of those that exist are pervasive.¹⁵¹ Because of structural racism, homophobia, transphobia, and ableism, Black, Latinx, and other people of color; lesbian, gay, bisexual, transgender, queer, nonbinary, and gender nonconforming (LGBTQ+) people; and people with disabilities are more likely to make low wages and be covered by Medicaid than white, non-disabled, or cisgender and heterosexual people.¹⁵² Thus, they are disproportionately likely to be subjected to Medicaid’s benefit gaps, which are sources of persistent reproductive oppression. This Part discusses how strengthening coverage of abortions and pregnancy-related benefits, including doula care, could help alleviate this oppression and interconnected intergenerational health inequities.

Abortion coverage

In May 2022, the Supreme Court issued its decision in Dobbs v. Jackson Women Health Organization and overturned the constitutional right to abortion.¹⁵³ The subsequent sweeping state-by-state loss of abortion rights has bolstered calls on Congress to “codify Roe” or enact a federal statutory right to receive abortions.¹⁵⁴ Yet for underserved communities with low incomes, Roe was never enough to ensure access.

For a moment in time after the Supreme Court decided Roe in 1973, Medicaid covered an estimated 300,000 abortions per year.¹⁵⁵ Then, in 1976, in an effort to prevent Medicaid beneficiaries from having abortions, Congressperson Henry Hyde proposed a budget rider to Congress’ annual appropriations bill that prohibited federal funding for nearly all coverage.¹⁵⁶ When Congress enacted fiscal year 1977 appropriations legislation with the initial version of the so-called Hyde Amendment (Hyde) that September, Cora McRae, a pregnant New York Medicaid recipient seeking abortion coverage, and New York City Health and Hospitals sued. Four years later, the Supreme Court upheld Hyde in Harris v. McRae. ¹⁵⁷ In doing so, the Court “effectively condoned a two-tiered system of abortion rights that protected the affluent but allowed the government to interfere with the reproductive decisions of the poor.”¹⁵⁸ The Hyde amendment subjects Black, Indigenous, and other people of color, LGBTQ+ people, people with disabilities, and other people with low incomes to a “separate and unequal” standard of abortion access.

Since 1976, Congress has included some version of Hyde in every annual appropriations Act funding Medicaid. In its current form, the amendment bans the use of federal funds for abortions in Medicaid and certain other programs unless the pregnancy is the result of rape or incest, or the pregnant person suffers from a physical health condition that places them in danger of death unless an abortion is performed.¹⁵⁹ Over time, Congress has expanded abortion coverage restrictions to other critical health programs serving underserved communities with low incomes, such as CHIP, the Indian Health Service, Medicare, and federal detention centers and prisons.¹⁶⁰ Such expansions have served as bargaining chips to secure votes in mainstream federal health care reform efforts, such as the ACA.¹⁶¹

While states have the power to use their own funding to cover abortions in Medicaid beyond Hyde’s narrow exceptions, only sixteen do so.¹⁶² Moreover, several others violate federal requirements to cover abortions within Hyde’s narrow exceptions.¹⁶³ South Dakota has flagrantly violated federal law for decades by refusing to cover abortions for pregnancies resulting from rape or incest.¹⁶⁴ In addition, Arkansas, Missouri, and Oklahoma violate federal law by not covering Mifeprex.¹⁶⁵

Hyde operates as its namesake intended: as a de facto ban on abortion access for many Medicaid beneficiaries. Without coverage, out-of-pocket costs for abortions are often prohibitively high for people living near FPL.¹⁶⁶ Beyond the cost of care itself, access often requires costly travel, childcare, overnight stays, and forgone wages.¹⁶⁷ Because of Hyde, many Medicaid beneficiaries and people subject to mirror coverage bans must scrape together money for their abortions, forgoing rent, groceries, utilities, or other necessities for their families. Many cannot come up with the necessary funds before hitting states’ gestational limits on abortion access. Hyde forces one in four women in Medicaid who seek abortions to carry their pregnancies to term.¹⁶⁸ This means that many Medicaid beneficiaries grappled with forced pregnancies long before Dobbs. ¹⁶⁹ As state abortion bans overtake large sections of the country, more and more Medicaid beneficiaries will experience this injustice.

Medicaid beneficiaries do not experience this injustice in a vacuum. Because of structural racism, Black and Indigenous women and birthing people are not only more likely to be covered by Medicaid and thus subject to Hyde and forced pregnancies than their white counterparts, they also face considerably higher risks of severe and life-threatening health complications from their pregnancies.¹⁷⁰ While Hyde theoretically enables abortion coverage when a pregnant person’s life is threatened, the line between health and life endangerment is often unclear and can shift swiftly, leaving little to no time to obtain coverage and thus, care.¹⁷¹ In addition, while state Medicaid abortion coverage beyond Hyde’s exceptions is associated with an average sixteen percent risk reduction in severe maternal morbidity, many states with the most extreme restrictions on abortion access are also those facing the worst maternal health crises, especially for Black women and birthing people.¹⁷²

In addition to maternal health implications, controlling the reproductive lives of women, transgender men, nonbinary, and gender nonconforming people can profoundly negatively affect the social determinants of intergenerational health.¹⁷³ When people can access abortions, the children they have later on experience greater economic security and parental bonding, which positively support health, than children resulting from abortion denials.¹⁷⁴ Moreover, states that restrict abortion access often have fewer policies in place to support families, such as Medicaid expansion, paid family and medical leave, fair pay, and fair work schedules.¹⁷⁵

While the white-led mainstream reproductive rights movement historically neglected the Hyde Amendment, Black and other reproductive justice advocates of color have spent decades organizing movement infrastructure and momentum to end it.¹⁷⁶ In 2013, these efforts culminated in the creation of All* Above All, a cross-movement campaign focused on securing equitable abortion coverage and fostering abortion justice for all.¹⁷⁷ Campaign members across the reproductive health, rights, and justice movements have worked to end the Hyde amendment and enact the Equal Access to Abortion Coverage in Health Insurance (EACH) Act, which would provide Medicaid beneficiaries and others who receive federally funded coverage or care with an enforceable right to abortion coverage.¹⁷⁸ Neither health equity nor reproductive justice will be possible so long as federal abortion coverage bans, state violations of scant federal coverage requirements, outright abortion bans, and other abortion barriers persist.

Expanding pregnancy-related benefits

Medicaid requires that states provide full-scope Medicaid coverage to qualified pregnant people who meet certain income limits. For pregnant people with household incomes above the limit for full-scope coverage, states are required to provide pregnancy-related Medicaid beneficiaries with short-term coverage for prenatal care, labor and delivery, family planning, and medically necessary “[s]ervices for conditions that might complicate the pregnancy.”¹⁷⁹ While most states nevertheless go beyond these narrow requirements and provide full benefits, five states limit coverage to only pregnancy-related services for some or all beneficiaries in this category.¹⁸⁰ Beneficiaries across the country may struggle to access coverage for services that are clearly pregnancy-related. For example, California advocates have noted cases in which their state Medicaid agency denied coverage for care for broken bones, brain tumors, heart disease, or physical therapy for sciatica or injuries sustained during delivery.¹⁸¹ Consequently, reproductive justice and allied health advocates are fighting to expand mandatory pregnancy-related eligibility to include full-scope benefits.¹⁸²

Pregnancy-related benefit reforms can also help address pervasive structural racism and gender oppression in maternity service delivery. In a 2019 national survey, one in six women reported mistreatment during childbirth. Rates were substantially higher for Indigenous, Hispanic, and Black Women.¹⁸³ In a 2018 California survey, Black, Asian, and Pacific Islander women who gave birth in hospitals reported higher rates of unfair treatment, harsh language, and rough handling than white women.¹⁸⁴ These conditions are unacceptable.

Full-spectrum doula care, including but not limited to prenatal, birth, and postpartum doula services, may help mitigate the effect of these harms on maternal and infant child health outcomes and equity.¹⁸⁵ Doulas, and particularly community-based doulas, can provide crucial individually tailored and person-centered social, emotional, and physical support and information for people throughout pregnancy, labor and delivery, and the postpartum period. Community-based doulas expand upon this model to provide communities at risk of poor outcomes with culturally and linguistically appropriate services at low or no cost.¹⁸⁶ Their services may include birthing support, prenatal and postpartum home visits, childbirth and breastfeeding education, referrals to health and social services, and other support. A growing body of research demonstrates how prenatal, birth, and postpartum doulas can improve maternal and child health outcomes, including reducing cesarean delivery rates, prematurity and illness in newborns, and the likelihood of postpartum depression.¹⁸⁷ Access can alleviate experiences of reproductive oppression and broader discrimination in maternal health care delivery that affect health outcomes and racial equity.¹⁸⁸ Yet the cost of doula care can place access out of reach, particularly for Black, Indigenous, and other women and birthing people of color with low incomes.

Medicaid doula coverage can help facilitate access.¹⁸⁹ Consequently, Black doulas, Black-led community doula groups and doula collectives, other reproductive justice advocates, and allied health advocates are fighting for and guiding implementation of Medicaid doula coverage.¹⁹⁰ As of November 2022, eight states and D.C. were actively covering doula care, six states were in the process of implementing coverage, and fifteen were pursuing related actions to further access.¹⁹¹ However, some states have struggled with implementation.¹⁹² Medicaid coverage must be equitable, sustainable, and inclusive in order to ensure that doulas can adequately support pregnant, birthing, and postpartum beneficiaries.¹⁹³ To accomplish this, policymakers and health advocates must ensure that doulas and doula groups who are already serving Medicaid beneficiaries and other low-income populations, and especially Black, Indigenous, and other doulas of color, and community-based doulas, have a meaningful seat at the table at every step of benefit design, advocacy, and implementation.¹⁹⁴

Conclusion

What parameters of change would be possible if Medicaid reformers concerned with health equity adopted reproductive justice as a central commitment? For decades, the reproductive justice movement has fought to center underserved communities’ concerns with reproductive oppression in Medicaid and health care reform efforts. Its “source code” has served as a vital foundation for the design and advancement of more equitable, inclusive, holistic, and meaningful solutions left out of mainstream agendas. This has been evident in the reproductive justice movement’s visionary efforts to end the Hyde amendment and laws policies that withhold eligibility from immigrants. It is clear in their efforts to address eligibility and benefit gaps that perpetuate the Black and Indigenous maternal health crisis, and fight for universal access to truly comprehensive health care, free from discrimination, coercion, or violence, for everyone.

If we seek transformational change for underserved communities, including Medicaid beneficiaries and populations unjustly excluded from the program, we cannot depend on dominant legal and policy frameworks or the usual “experts” to chart the course. We must recognize when reproductive justice movement advocates are missing from Medicaid and health care reform advocacy and policymaking spaces, fight for their full inclusion, and invest in their leadership. We must learn from their expertise and ensure that future Medicaid and health care reform efforts center their concerns from the beginning and onward. Together, we can dismantle reproductive oppression where it persists in our public health insurance safety net, federal health care reform proposals, and everywhere.