Twenty years ago, working at the bedside in a maternity ward, Hakima Tafunzi Payne saw first-hand how poorly black women were often treated.
“People didn’t go out with the intention to be racist, but you still saw the impact that racism had,” said Payne, a labor and delivery nurse. “Black families were always held to a different standard, seen as more suspect. White patients were given leeway that black patients were never given.”
Payne tried raising the problem with her colleagues at the time, but no one wanted to listen. So, in between shifts at the Kansas City, Missouri, hospital, Payne began writing down what she saw and imagining how she would design a maternity care system that treated all women humanely.
“Uzazi Village was born in those journals on those night shifts,” she said.“I wanted to create models of care that basically circumvented systems that weren’t really intended to benefit black folks. Actually, I’d go even further and say they were designed specifically to exclude blacks folks.”
Now seven years old, Uzazi Village is a Kansas City-based nonprofit working to narrow disparities in maternal and infant health, particularly in black communities. Its signature program is Sister Doulas, which both trains doulas and serves as a community-based doula agency.
A growing body of research shows that doulas—nonclinical professionals who provide support and guidance to women during pregnancy, labor, birth and the postpartum period—are a promising strategy for improving health outcomes, closing disparities and advancing equity in maternity care. In fact, a handful of states are beginning to extend Medicaid coverage for doula care.
“Just having an African American doula accompany an African American mother is really the secret sauce,” said Payne, who is also co-founder and executive director of Uzazi Village. “Having that cultural companioning and comfort really makes a difference to our mothers and fathers … When you wrap families in a cocoon of love and acceptance, they do better.”
The Sister Doulas training program includes an intensive eight-day curriculum that covers a range of reproductive care, from birth to breastfeeding to sexual health in between pregnancies, and requires all students to complete a 100-hour community health worker course. To date, Uzazi Village has trained hundreds of doulas and served hundreds of families.
“I created a work-around to protect black families until the system changes,” Payne said. “This is not an entirely clinical problem—this problem is rooted in systemic racism.”
Maternal death rates high for black women
In general, the U.S. is doing poorly on maternal mortality, with a rate that has steadily risen in the past two decades and resulted in the worst maternal death rate in the industrialized world. Meanwhile, rates in other rich nations inch downward.
According to the Centers for Disease Control and Prevention, about 700 U.S. women die every year from pregnancy-related complications, with nearly 60 percent of maternal deaths preventable and most happening within 42 days of women giving birth.
The picture, however, is much worse for black women, who experience maternal death rates at three to four times higher than white women. Recent CDC data show that the rate of pregnancy-related deaths among black women is nearly 43 per 100,000 live births, versus 13 such deaths among white women.
Black women’s babies also have a mortality rate more than twice as high as for white infants. Other women of color, especially American Indian and Alaska Native women, also experience serious maternal death disparities, but the black-white gap is the starkest.
Over the last few years, the black maternal death crisis has rightfully received more media coverage, attention and support. Groups such as the Black Mamas Matter Alliance and its annual Black Maternal Health Week campaign, now in its second year, are raising public awareness and mobilizing cross-sector, grassroots action nationwide.
Many hospitals and health care systems are adopting new patient safety protocols to reduce the risk of maternal complications. Earlier this year, members of Congress formed the first Black Maternal Health Caucus, and last year lawmakers passed the Preventing Maternal Deaths Act, which directs more federal resources to collecting data on maternal death.
But closing the maternal death gap is uniquely challenging, as research increasingly shows that the disparity is less an outcome of clinical practices, but of systemic racism and bias. For example, the California Maternal Quality Care Collaborative, launched in 2006, designed and advanced a set of clinical patient safety protocols that drove the state’s overall maternal death rate down by 55 percent. But a closer look at the data found that the intervention did little to close the racial gap, with black women continuing to die at higher rates. In response, the group launched the California Birth Equity Collaborative, which is partnering with black women-led community groups to address the persistent inequity.
“There are no biological or genetic reasons for this,” said Joia Crear Perry, M.D., founder and president of the National Birth Equity Collaborative. “We have to focus on racism and how people are treated. We have to talk about racial inequities first.”
Understanding black women’s experiences
Across the country, work is underway to intervene on the root causes of black maternal death, with much of it focused on better understanding black women’s experiences and empowering black women in their own care and choices.
“We need to start redefining what the low-hanging fruit is,” Perry said.“Right now, it’s all about modifying behavior, but to me, it’s actually about listening to black women, supporting what they’ve been doing, and investing in community-based and culturally relevant interventions.”
At the collaborative, Perry led work to interview black women across seven states who had experienced the death of an infant, finding similar stories of being mistreated during childbirth and lacking access to key social determinants of health, such as reliable transportation.
The interviews were part of the collaborative’s Campaign for Black Babies, which began in 2015 and is working to reduce black maternal and infant death in the 10 U.S. cities with the highest rates. Perry said the stories made it clear that “we needed to have an honest conversation about racism.”
In the years since, the collaborative has provided training on birth equity—defined as the “assurance of the conditions of optimal births for all people with a willingness to address racial and social inequities in a sustained effort”—at hospitals, health care systems and health departments across the country.
This year, the group began work to create a new metric for patient-reported experiences related to respectful care and trust in childbirth and pregnancy. In June, a study published in Reproductive Healththat surveyed more than 2,100 U.S. women found that more than 27 percent of women of color with low socio-economic status reported mistreatment in childbirth, compared to about 19 percent of white women.
“At the core of our work is talking to women in the community,” Perry said. “It sounds simple, but that’s what’s been transformational.”
Centering the needs and experiences of black women is also at the heart of efforts in New Jersey, where a new public health initiative is supporting community models of care that explicitly acknowledge the impacts of structural racism.
“New Jersey is one of the riskiest states to have a baby, and that risk is many times higher for black women,” Shereef Elnahal, M.D., commissioner at the New Jersey Department of Health, said.
Shortly after Elnahal joined the agency in 2018, he ordered a root-cause analysis of the state’s maternal and infant death disparities, including focus groups in disproportionately impacted communities.
Those focus groups, he said, revealed that women of color were experiencing daily social stressors at much higher levels than the general population, and it was negatively impacting their maternal health risks.
“It was immediately clear that the problem extended far beyond the clinic walls,” he said.
In response, the agency redirected millions in existing funds to women at most urgent risk, announcing the Healthy Women, Healthy Families initiative in spring 2018. The initiative funds organizations already working in high-need areas to implement innovative maternal and infant health interventions, with explicit attention on black women of child-bearing age.
The agency also devoted $450,000 to pilot a doula program in places with high rates of black infant mortality, partnering with Uzazi Village in Kansas City and using its curriculum to train community-based doulas in New Jersey.
As of June, Elnahal reported that 17,000 women had been screened and more than 9,000 had been referred to health and community support services. About 75 percent of the women were pregnant at the time of referral, and 30 percent resided in the eight cities with the highest black infant mortality rates. More than 60 healthy babies had been born with help from the doula program. Elnahal noted that as a direct result of the doula pilot, the state’s Medicaid program began reimbursing doulas in July.
“Change really moves at the speed of trust, and we’re taking that really seriously with this initiative,” Elnahal said. “This is evidence-based work, but it’s also an investment in local solution-building. It requires that you go into the community, respect it, listen to it and work alongside it.”
Also at the state level, a 2018 federal law is expected to generate insightful new data on black maternal death and highlight key opportunities for intervention.
Currently, every state tracks incidence of maternal death in some form, such as compiling death certificate data. But as of early 2019, only 38 states had active, CDC-recognized maternal mortality review committees, which gather data from multiple sources to get a broader picture of the circumstances surrounding maternal death, oftentimes including factors such as housing, food access and structural racism.
The federal Preventing Maternal Deaths Act, signed into law last year, is intended to establish and support such committees in state and tribal nations countrywide.
The law is good news for maternal health, but it is critical that such committees include and work with women most at risk, said Dara Mendez, an assistant epidemiology professor at the University of Pittsburgh and a member of Pennsylvania’s newly established Maternal Mortality Review Committee, which had its first meeting in July.
In a Health Affairs article published in February on implementation of the new federal law, Mendez and co-authors said the “extent to which these voices are currently present in (maternal mortality review committees) is not known, but deserves a razor-sharp focus” during the law’s implementation.
“If we’re trying to center the experiences of the most marginalized, then they also need to be at the forefront of research,” Mendez said.“We need to be working in tandem.”
Ebony Marcelle is one of five midwives on the newly established Maternal Mortality Review Committee in Washington, D.C., which has some of the worst maternal death rates in the country and where three-quarters of such deaths occur among black women.
“We know so many of these deaths are preventable,” she said. “And now we can really dig our hands into the data and figure out why women are dying and create solutions.”
Marcelle is director of midwifery at D.C.’s Community of Hope Family Health and Birth Center, one of only five federally qualified health centers in the country that includes a birth center. She said two components have been key to the clinic’s success in serving black women—one is accepting Medicaid insurance, which gives women more control over where to get care and give birth.
The other is the center’s unique midwifery model, which offers a central point for accessing a full continuum of care and focuses on practices that circumvent systemic barriers. For example, the clinic does not turn away prenatal patients who are late for an appointment.
It’s a seemingly simple but impactful strategy for “meeting women where they’re at” and acknowledging the daily social stressors many women face, such as finding child care or depending on public transit, Marcelle said.
The center is also primarily staffed with midwives of color, which she said is key for building trust among disenfranchised patients.
“Racism training isn’t just a box we check,” Marcelle said.“Yes, we need to have harder conversations about how systems are inherently racist, but we also need to change what the system looks like and include more providers of color who can create culturally aware care.”
From The Nation’s Health