When public health researcher Ndidiamaka Amutah-Onukagha talks about her work studying racial health disparities, she begins by telling the stories of two loved ones that she's lost. The first, her close high school friend, died at age 15 from maternal complications related to lupus. Her death got Amutah-Onukagha thinking about the care young mothers received in her hometown of Trenton, New Jersey, compared to more affluent areas nearby, like Princeton and Lawrenceville. “That shaped my commitment to addressing disparities,” she told VICE.
Years later, during postdoctoral training, Amutah-Onukagha worked closely with Shalon Irving, a health disparity researcher and epidemiologist at the Centers for Disease Control and Prevention who later died from high blood pressure complications in 2017, just three weeks after delivering her daughter.
“Losing a friend as a teenager and then losing a colleague as an adult, 15 years apart, I’m thinking, Why do we keep losing Black women like this? This is crazy,” Amutah-Onukagha said.
Amutah-Onukagha is now an associate professor of Public Health and Community Medicine at Tufts University School of Medicine. She's the principal investigator of one of six projects recently awarded an NIH grant to investigate racial and ethnic disparities in pregnancy-related complications and deaths, which are a major crisis in the U.S.
A November 2020 Commonwealth Fund report compared the U.S. to 10 other high-income countries and found that it has the highest number of maternal deaths, with 17 moms dying per 100,000 live births. (France, which has the second-worst rate, has 8.7 maternal deaths per 100,000 live births.) Overall, according to the CDC, roughly 60 percent of maternal deaths among mothers of all races in the U.S. are preventable.
The situation in the U.S. is particularly dire for Black and Indigenous moms, who are two to three times more likely to die than white moms, and who are significantly more likely to experience serious complications like cardiovascular conditions, hypertensive disorders, and hemorrhage. Black babies are twice as likely to die before their first birthdays than white ones.
As VICE and numerous other outlets have previously reported: More and more public attention has turned to what community activists, researchers, physicians, birth workers, and grieving families have long been asking: What will it actually take to prevent Black moms from dying?
A paper published in the Annals of Internal Medicine this month reviewed research-backed initiatives to address maternal mortality, sorting them into five areas: “Data and surveillance,” which includes initiatives to standardize data so information can be compared and analyzed, collecting comprehensive data on what’s happening to moms; “telehealth,” or, care delivered virtually over video appointments; “clinical workforce training and patient education,” meaning how to train health care providers and educate moms; “comprehensive models and strategies,” like patient-centered medical home programs; and “clinical guidelines, protocols, and bundles,” such as introducing standardized steps physicians should take during obstetric emergencies.
Getting more data is crucially important, as information will help researchers understand exactly who is dying, when they are dying, and what could have been done about it. “Data can be used for monitoring, research, and informing prevention,” study co-author Leticia Manning, a public health analyst at the Health Resources Services Administration (HRSA) in the Department of Health and Human Services, told VICE. “The collection of valid and reliable data using a standardized data collection process can help to improve our understanding of racial disparities and their contributing factors related to maternal mortality, severe maternal morbidity and overall maternal health.”
The paper identifies some of the complex factors that play into racial disparities in maternal outcomes. At the patient level, factors include advanced maternal age, chronic health conditions, and substance use—which can be exacerbated by a lack of access to local or affordable care. Community-level factors include lack of transportation options and unstable housing. And then there are health-system-level factors, like a dearth of postpartum care options and a lack of standardized responses to obstetric emergencies (e.g., a hemorrhage).
There’s no one-size-fits-all solution to the maternal health crisis, which is why researchers are approaching racial disparities in outcomes from so many angles.
Amutah-Onukagha received an NIH grant to head research in three areas: Analyzing hospital discharge data to locate potential missed opportunities for interventions, assessing how community doula programs affect maternal mortality rates, and analyzing how maternal safety bundles can help Black moms access high-quality OB care. A maternal safety bundle is a set of protocols for identifying and treating a pregnancy-related complication such as sepsis or hemorrhage. A research-backed bundle offers recommended best practices for identifying and treating a specific issue, in the hopes of improving outcomes.
The other five NIH grants focused on racial disparities in maternal and partum care will fund research into interventions for high-risk postpartum moms, investigating how stress affects moms before conception and during pregnancy, and the role of Medicaid expansion.
Nansi Boghossian, an associate professor of Epidemiology and Biostatistics at the University of South Carolina Arnold School of Public Health, received a grant to study Medicaid expansion efforts and hospital quality. Specifically, she’s interested in why certain populations of moms end up at hospitals that have a track record of poorer outcomes, and how to change those patterns.
Boghossian spoke to VICE about what contributes to poor hospital outcomes in the first place. “One of [the reasons] are the financials of the hospital,” she said. “Basically, they may not have the number of nurses that are needed. They might not have the equipment or training of the physicians. There are a lot of factors.”Plus, Boghossian said, hospital outcome data is not generally public information. Patients may have no idea what the maternal mortality rate is at the hospital they attend, or how high the Caesarean birth rate is there. (Caesarean births performed when medically unnecessary are linked to an increased rate of dangerous complications, research suggests).
Because hospital data typically isn’t made public, families often only find out about a certain hospital or physician’s reputation after they give birth. “You have to go to a hospital association in order to try to get that data,” Boghossian says. “And, yeah, if you do have that knowledge in terms of hospital outcomes, you might have a play in terms of saying you don't want to go to this hospital—you want to go to that hospital.”
The COVID-19 pandemic has placed enormous stress on hospital systems and individual health care providers. Long-fought wins in the maternal health space have been set aside until the pandemic is under control. For example, Senate Bill 464 passed in California last October, requiring all California perinatal healthcare providers to undergo implicit bias training, the intention being that additional training will lead to fewer negative health outcomes among Black mothers. But it's yet to be seen how that particular piece of legislation will play out, as it went into implementation in January—and then the COVID-19 pandemic began.
“Just when we were starting to have these conversations—how does [requiring implicit bias training] look in terms of hospitals and birthing centers, to be able to put it into play—we were hit with the pandemic, like the rest of the world,” Nourbese Flint, a program manager with Black Women for Wellness (BWW), told VICE. (Flint previously spoke to VICE in 2018 about her work and the importance of Senate Bill 464.) “Essentially, everything got thrown out.”
Many Black families have reported experiencing a lack of thoughtful, compassionate care. Simone Sobers, a fitness entrepreneur based in Miami who founded The Boss Chick Dance Workout, had planned to deliver her son, Rory Justice, during a home birth with a doula and a midwife. After laboring for 24 hours at home after her water broke, she was transferred to a local hospital. Sobers was given Pitocin and an epidural, and told VICE nurses were dismissive of her “extreme, extreme, extreme pain” in the hours following the procedure. “I was clawing at the bed,” she said.
Sobers says she asked for a doctor to come, but it took hours for a physician to arrive. “They didn't understand how much pain I was in,” she said. “They weren't doing anything about it.” After she safely delivered her son, clinicians discovered why her pain level was so high: The epidural catheter had become disconnected, so she hadn’t received the medication. “I'm baffled by just— the negligence, and how they just brushed it off," Sobers said, "When I was explaining to them that I was in pain.”
Policymakers hope the Biden-Harris administration will affect further legislative change. In a November 2020 policy analysis, the Guttmacher Institute called for incoming leadership to address racism as a public health crisis and expand Medicaid coverage to cover moms for at least 12 months postpartum. Currently, states are only required to cover moms using Medicaid for 60 days postpartum, despite data showing that one-third of maternal deaths occur between one week and one year after birth, and clear research that Medicaid expansion saves lives. Many states are working to extend Medicaid coverage to prevent needless deaths.
The Guttmacher Institute also urges Congress to pass the Black Maternal Health Momnibus Act. Composed of nine individual bills, the Momnibus is a comprehensive package that covers a huge variety of efforts, from funding for social determinants of health like housing and transportation to promoting different payment protocols for insurers.
“We cannot rest until we’ve gotten legislation signed into law to ensure that moms can access the care and support they need before and during their pregnancies, throughout labor and delivery, and for the full yearlong postpartum period and beyond,” said recently re-elected Representative (and registered nurse) Lauren Underwood (IL-14) in a July 2020 press release.
In the short term, while we wait for legislation to pass and programs to be put in action, families often have to advocate for themselves to access competent, quality care. Some are fortunate enough to hire birth workers to help advocate for them: doulas. Research shows that doula care improves outcomes for moms and infants. One study found that Medicaid recipients with doula care had much lower rates of preterm and Caesarean births. According to the National Health Law Program’s Doula Medicaid Project, which pushes for all CA moms covered by Medicaid to have access to a full-spectrum doula during pregnancy and the postpartum period, doulas can also “help reduce the impacts of racism and racial bias in health care on pregnant women of color by providing individually tailored, culturally appropriate, and patient centered care and advocacy.”
Amy Chen, a senior staff attorney in the National Health Law Program, told VICE that the program’s legislative efforts have been put on hold due to the pandemic affecting budgets and priorities. “The hospitals are still kind of struggling to figure out how best to serve pregnant and postpartum people with a lot of the challenges of COVID,” Chen said.
In the meantime, doulas and families alike are frustrated that the onus is falling on them, rather than the system, to ensure Black moms and babies survive. “Doulas shouldn’t have to be in there to save people’s lives,” said Flint, the BWW program coordinator. “But that’s a stopgap that we need to do right now. We know that it's helpful.”
Iris Kimbrough’s own experiences led her to start doing birth work in 2016. The founder of Phoenix Rising Birth Works delivered each of her three children via Caesarean, once without a doula present and twice with doulas care. She says her experiences attempting a vaginal birth after Caesarean (VBAC) and her interactions with hospital staff inform her work—during her second birth, she told VICE, “You could tell the difference in how I was treated when I was alone in the room, versus when my White, older doula was in the room.”
Kimbrough provides holistic birth preparation and postpartum support to families, and she wants to make one thing clear. “We're not heroes,” she said. “We’re here to be support. As a doula, I'm not this badge that protects you from anything. But I've given you all this information, so you have the lingo to interface with these hospitals that are notoriously and consistently antagonistic to Black and brown folks.”
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