A Community-Based Policy Approach to Advance Maternal & Reproductive Health Research among Minoritized Birthing Populations in the United States

Siwaar Abouhala, Ndidiamaka Amutah-Onukagha, PhD, MPH, & Nina Ashford, Drph, mph

Abstract

Black and Brown maternal health disparities are rooted in historical health policies limiting power and reproductive decision-making in the United States. From anti-Black racism in the field of obstetrics and gynecology and policies such as the Sheppard–Towner Act of 1921 in the American South, to xenophobia through the forced sterilization of non-English speaking mothers in the 20th and 21st centuries, there is a clear link between health policy and minoritized maternal health outcomes. In an effort to advance research and analysis of these policies, the Maternal and Child Health Policy Unit at the Center for Black Maternal Health and Reproductive Justice (CBMHRJ) has launched a series of initiatives in the Greater Boston Area. From working alongside undergraduate student advocates on informed voting campaigns to community-engaged research among immigrant parents in the local area, the Policy Unit aims to mobilize the development of policies that further reproductive health justice and equity.

Introduction and Background

Minoritized birthing populations, namely Black and Brown birthing communities, have historically faced socio political hurdles in accessing maternal and child health rights and services in the United States.^1,2 Due to chronic xenophobia as well as local and federal laws stripping away reproductive decision-making, Black and Brown maternal health disparities have dramatically widened nationally.^3,4 Stretching throughout American history, from the enslavement of Black individuals in the 17th century to racial segregation in the 19th and 20th centuries, medical racism is pervasive within the US healthcare system and adversely impacts Black and Brown birthing people.^5,6

These anti-Black and Brown maternal and reproductive health policies have direct repercussions on health disparities, as evidenced by modern-day inequities. However, one health care intervention that has been proposed to mitigate maternal morbidity and mortality is the integration of social support through the fields of midwifery and doula care. Black midwives and doulas, who provide medical and psychosocial support to the birthing person and their family members, were outlawed from practicing in a discriminatory attempt to obstruct Black birthing practices and to medicalize the field of obstetrics and gynecology through a White colonial lens.^7,8 For instance, “Granny Midwives” or “Grand Midwives,” who provided essential maternal and child health services to Black birthing communities in the American South, were prevented from practicing by the Sheppard–Towner Act of 1921. This controversial piece of legislation utilized America’s legislative system to codify racist policies that prohibited non-licensed medical providers from working.^6,7,8,9 This legislative power dominance led to intergenerational ripple effects in the Black birthing community. As Black maternal mortality rates in modern-day times continue to worsen, Black women and birthing people are over three times more likely to die due to pregnancy-related causes than their White counterparts.¹⁰

Other minoritized communities have also experienced maternal and reproductive health disparities as a result of discriminatory policy. For example, forced sterilization among Latino American communities has been documented in various instances, such as in the 1960s and 1970s at the Los Angeles County-USC Medical Center, in which 10 Mexican-American women reported being sterilized without their consent.^11,12 In the groundbreaking case of Madrigal v. Quilligan (1975), famously known by the line “No Más Bebés,” or “No More Babies,” a California State law of eugenics was identified, in which over 20,000 individuals were forcibly sterilized due to being deemed unfit to reproduce.^11,13 Unfortunately, violations of reproductive autonomy are ongoing. In 2020, a congressional investigation uncovered that immigrant women who were being detained at Immigration Control Enforcement facilities in Georgia received unnecessary hysterectomies at the hands of the US Government.¹⁴

From the systemic malpractice of asking heavily medicated, non-English speaking women to consent to sterilization to enacting law that allows providers and politicians alike to make reproductive decisions on behalf of immigrant women, the explicit racism showcased through these cases calls to attention the repercussions of leaving community voices out of policy-making.¹⁵ This exclusionary approach to health policy regulation has detrimental effects, as evidenced by the 2022 overturning of Roe v. Wade (1973), through which the U.S. Supreme Court previously upheld abortion as a constitutional right for about 50 years.¹⁶ As a result, the bodily autonomy of millions of birthing people and people of reproductive age has been put at risk, as reproductive justice now hinges on local and State policy. Due to such restrictions, it is predicted that a total ban on abortion across the United States may increase pregnancy-related deaths by approximately 21% among all birthing people and about 33% among Black birthing people.¹⁷

Central Focus & Purpose

This painful history has compounded into an ongoing, modern-day struggle to achieve maternal and reproductive justice. As maternal health outcomes remain variable and dependent on health policy oversight, it is essential that pregnant and birthing communities are centered in all aspects of reproductive and perinatal decision-making. Founded in 2022 at the Tufts University School of Medicine, the Center of Black Maternal Health and Reproductive Justice (CBMHRJ) aims to answer this call to action through its six main units: (1) the Research Development Unit, (2) the Maternal Health Epidemiology and Data Synthesis Unit, (3) the Education & Training Unit, (4) Community Engaged Research Unit, (5) the Maternal Outcomes for Translational Health Equity Research (MOTHER) Lab Unit, and (6) the Maternal and Child Health (MCH) Policy Unit18. The MCH Policy Unit, in particular, focuses on co-creating and advancing community-based policy alongside Black and Brown birthing communities in Massachusetts and nationally. Through collaborating with student organizers, conducting community-engaged research studies, and curating maternal equity-based policy, the MCH Policy Unit aims to establish trust, accountability, and representation in U.S. maternal and reproductive health policy.

Centering Community-Based Perinatal Disparities Research There is a plethora of research on the positive impacts of community-based collaboration and engagement in maternal health program implementation, demonstrating the potential of this approach to advance health equity among Black and Brown communities.^6,7,17,19-22 However, various limitations remain within the health policy sphere, as there exists a lack of established community-based frameworks to address perinatal disparities.^5,23 The MCH Policy Unit at the CBMHRJ strives to fill this gap through collaborating with local Black and Brown parents on all aspects of health policy research and formulation, including project planning, research question construction, participant recruitment, dissemination of key findings, and advocating for action-based policy change.

MCH Policy Unit Goals

The goals of the MCH Policy Unit are:

• To construct and co-create maternal health policy alongside local Black and Brown parents and birthing people.
• To identify and work towards eradicating perinatal health disparities in maternal and child health policies and laws.
• To track and analyze maternal equity-based policy initiatives at the local, State, and federal levels.
• To regularly propose and advocate for novel policies supporting Black and Brown birthing people in the prenatal, labor and delivery, and postpartum phases of the perinatal period.

Ongoing Projects

Since the beginning of the operation of the MCH Policy Unit in July 2022, various health policy priorities were attempted and accomplished, including: (1) Contributing to ongoing maternal health policy development and civic engagement campaigns, (2) Collaborating with undergraduate students on college campuses to support civic engagement within the maternal and reproductive rights sphere, and (3) constructing a Parents Advisory Board and receiving a community research grant to advance maternal and infant health in Somerville, MA, USA.

First, the MCH Policy Unit contributed to the review and development of several pieces of federal and Massachusetts state legislation. Specifically, we reviewed and provided feedback on Senator Markey’s Green New Deal for Health to ensure federal policies were inclusive, and did not cause undue harm for Black and Brown birthing people. We also drafted language for State Senator Liz Maranda’s S.1415 An Act relative to birthing justice in the Commonwealth, also known as the Massachusetts Momnibus. We drafted the structure of the proposed Fatherhood Commission and enhanced language in the Act to support Incarcerated Mothers. We proudly signed on to support bill H.R. 5012 to improve research and data collection on stillbirths, and for other purposes.

Second, in an effort to reach the next generation of maternal health advocates and equip them with the tools they need to advocate for equitable perinatal health policy, the MCH Policy Unit collaborated with MARCH: Maternal Advocacy and Research for Community Health, which is based at Tufts University and is the largest undergraduate-run maternal and child health organization in the United States. In the months leading up to the 2022 Midterm Elections, we jointly formed a Get Out the Vote (GOTV) tabling series in which local Boston-area student voters received assistance in: 1) registering to vote, 2) building a voting plan, and 3) centering maternal and reproductive health rights in their voting decisions. Students were supplied with stamped envelopes for mailing in documents, brochures and MCH Policy Unit representatives for any questions, and online resources for further research on perinatal health policies. This community-based programming equipped student voters with the vital information and tools to take actionable steps towards maternal equity, as well as provided learning and leadership opportunities for local student advocates to work alongside the MCH Policy Unit.

Lastly, the MCH Policy Unit applied for and received a community-engagement research grant through the Tisch College Community Research Center (TCRC) in collaboration with MARCH, MOTHER Lab, and SomerBaby, an early childhood and parent social services program through Somerville Public Schools,. This project, entitled the INSPIRE Study: Improving New Somerville Parent & Infant Resiliency & Engagement, consists of three central phases: (1) Somerville parent needs assessment survey creation, (2) the 2024 Somerville Family Day planning & facilitation, and (3) Nurture Kit (including diapers, baby formula, breast milk pumps, etc.) dissemination. Our proposed plan will provide essential data on the needs of local communities, and will focus on a rights-based approach in which the community has complete autonomy over the proposed research to inform local perinatal policy. Additionally, our Parent Advisory Board, consisting of local parents who are English-, Spanish-, or Portuguese-speaking, has provided valuable knowledge towards the advancement of this project, including the types of questions to ask on the Somerville parent needs assessment survey, as well as useful resources to provide at the 2024 Somerville Family Day event this upcoming summer.

Conclusion & Next Steps

Health policy research and practice have traditionally excluded community narratives from legislative decision-making, especially within the realm of Black and Brown maternal and reproductive health. Reframing this exclusionary approach is crucial to improve health outcomes and equity. The MCH Policy Unit at the CBMHRJ utilizes and advocates for the implementation of community-based co-creation for perinatal policy advancement. Through advising policy initiatives, fostering collaborations with students, and nurturing partnerships with local parents, the MCH Policy Unit is fully engaged in a community-centered approach to address maternal health outcomes, and invites other health policy leaders to do the same. Let us avoid recreating oppression of the past through constructing and enacting Black and Brown maternal health policies by Black and Brown communities, for Black and Brown communities.

About the Authors

Siwaar Abouhala (BA) is the Founder and Senior Advisor of MARCH: Maternal Advocacy and Research for Community Health, the largest undergraduate-led maternal health organization in the U.S.. She is a Research Assistant at the MOTHER Lab, and a Graduate Policy Fellow at the CBMHRJ at Tufts University School of Medicine. Dr. Ndidiamaka Amutah-Onukagha (PhD, MPH) is the Julia A. Okoro Professor of Black Maternal Health at Tufts University School of Medicine. In 2020, Dr. Amutah-Onukagha founded the MOTHER Lab: Maternal Outcomes for Translational Health Equity and Research, and then, in 2022, founded the Center for Black Maternal Health and Reproductive Justice (CBMHRJ). Dr. Nina Ashford (DrPH, MPH) is a Clinical Assistant Professor at the Tufts University School of Medicine. She is the Maternal and Child Health Policy Unit Lead at the CBMHRJ. She is currently the Deputy Director for the Program Alignment Group at the Centers for Medicare and Medicaid Services (CMS) Medicare-Medicaid Coordination Office.

Acknowledgements

We would like to thank the members of MARCH: Maternal Advocacy and Research for Community Health, MOTHER Lab: Maternal Outcomes for Translational Health Equity and Research, and the CBMHRJ: Center for Black Maternal Health and Reproductive Justice. Thank you for all of your continued work in advancing research, advocacy, and engagement within Black and Brown maternal health communities.

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