When Joia Crear-Perry, M.D., an obstetrician and gynecologist, found “African American descent” listed by cardiovascular experts as a risk factor for postpartum heart disease, she realized even advocates like her were doing something wrong, and that the media was amplifying the error. With the U.S. maternal health crisis gripping public attention – and Black, American Indian, and Alaska Native women up to three times more likely to die of pregnancy complications than white women – correctly naming the causes matters, she said.
“Our use of language and our desire to raise awareness about the huge inequities encroaching on the lives of Black women have conflated, even equated, Blackness and disease,” said Crear-Perry, founder and president of the National Birth Equity Collaborative, an organization that advocates for better Black maternal and infant health. “Race is not a factor for illness and death, but racism, bias, and discrimination definitely are.”
There is no known genetic connection between skin color or melanin concentration and biological causes of maternal illness or death, Crear-Perry said, even if U.S. statistics might suggest so.
Overall, those numbers are dire. For every 100,000 live U.S. births, 20 women die, according to the Centers for Disease Control and Prevention (CDC). That means American women face a greater risk of maternal mortality – that’s death within a year of being pregnant, including in childbirth – than women in any other industrialized nation. And the numbers have been trending up, with an estimated 58% increase since 1990.
But the problem, which is largely preventable, is made worse by the racial and ethnic disparities that have persisted over time and increase as women age, reported the CDC. While white women die from pregnancy-related causes at a rate of 13.4%, African American women die at a rate of 41.7%, like that of women in developing countries. American Indian and Alaska Native women follow with a mortality rate of 28.3%, according to the CDC.
To call attention to the national crisis of maternal illness and death, the NIH’s Office of Research on Women’s Health coordinated a special issue of the Journal of Women’s Health. NHLBI researchers and others offered a current understanding of the problem, some of the more promising clinical and public health practices being used to tackle it, and recommendations that might turn the tide.
The limits of “social determinants of health”
Racial and ethnic disparities – key drivers of worsening outcomes for women and babies – emerged as a focus of the issue, but researchers sought to move away from a conventional analysis of the problem. Crear-Perry, lead author of a paper on the social and structural determinants of inequities in maternal health, explained why racism, classism, and gender oppression are at the root of unequal health outcomes – not simply the conditions in which people are born, grow, live, work, play, and age. These so-called social determinants of health have long been used as ready explanations for health disparities, Crear-Perry noted. But they tend to distort what’s really going on, she said.
“Without proper context, social determinants lose their meaning and end up presenting disparities, such as Black women’s high rate of maternal mortality, as if they were natural phenomena,” Crear-Perry said. “We haven’t really addressed the underlying root causes of the problem, so it’s easy for people to still blame and shame communities of color by using the social determinants frame.”
That view is shared by Nicole Redmond, M.D., Ph.D., medical officer in the NHLBI’s Division of Cardiovascular Sciences. In a paper about health equity among Black women, she and her coauthors highlighted that social and economic equity is essential to achieving health equity and improving maternal health for Black women.
“To modify the social determinants of health, we need to look at systems and communities, not just at individuals, and that’s not the kind of thing that is easy to study,” Redmond said. “The high burden of chronic conditions that contribute to Black women’s maternal illness and death reflects structural inequities they experience their entire lives – within and outside the health care system.”
Both researchers agree that, despite the persistence of these interlocking disparities, there is a need to keep trying to find solutions in places where it most matters, rather than simply at the clinical level
“Writing a prescription for housing to a homeless person is not going to answer their housing insecurity,” said Crear-Perry. “But deeply investing in access to homes, into places for people to live, is not something the healthcare community has the capacity to do, nor should do. It’s not their role, but things won’t change until people have homes, safe drinking water, effective access to care, and healthy food for their families.”
Focusing on women’s health before conception
Ask the experts what they’d do first to improve maternal health, and many zero in on the health of the woman and the role of her health care provider before there is any talk of pregnancy. For example, a growing body of evidence shows that cardiovascular disease risk factors such as obesity, hypertension, and diabetes also contribute to poor pregnancy outcomes. At the same time, pregnancy complications such as preeclampsia and gestational diabetes, even in women who were healthy before getting pregnant, can lead to early onset of heart disease.
“If I could choose just one thing, I would try to help women get their cardiovascular health in the best possible shape before they even think about getting pregnant,” NHLBI’s Redmond said. This includes improving their social environment to help them eat healthier and exercise, which can greatly reduce heart disease risk factors, she explained. Clinicians should be partners in this effort, Redmond added, by providing holistic care before conception, during gestation, and after delivery. “They have to remember that pregnancy is a stress test for discovering cardiovascular disease.”
Indeed, Crear-Perry added, unhealthy outcomes for an expectant mom also means unhealthy outcomes for her unborn baby. “What increases her risk of morbidity also increases her risk of having a preterm baby,” she noted. And because premature birth is the number one cause of infant death, she said, “so it goes full circle.”
The key to addressing infant mortality, then, is looking at the underlying causes of premature births, she said. “We have exponentially improved the technology in natal intensive care units, but that just means we’ve gotten much better at having small babies survive,” Crear-Perry said. And she should know: her own son weighed less than a pound when he was born.
But greater survival does nothing to reduce the high number of preterm births in the first place – nor the harm to a woman’s body, which, in turn, raises her risk of hypertension diabetes, and cardiovascular disease. “We must look at the woman before pregnancy,” Crear-Perry said, “and undo the conditions that lead to unhealth.”
Access, implicit bias, and pandemic lessons
Access to health care has long been considered critical to improving maternal health outcomes for women of color, but Redmond insists access is not enough. It’s the care itself, she said, that also needs to be culturally responsive and free of bias.
“We tend to conflate race with class and assume all the problems are due to poor women of color lacking access to care, but Black women at all income and educational levels experience bad maternal outcomes,” Redmond said. “And research is showing detrimental effects of some interactions between women and their health care providers – the way women feel treated due to the assumptions being made about them can hurt.”
In another paper in the journal issue, researchers Bani Saluja, M.P.H, and Zenobia Bryant, Ph.D., delved deeper into how health care providers’ implicit bias contributes to racial disparities in maternal morbidity and mortality. For the researchers, this is an area ripe for immediate action – and many opportunities for intervention exist, from reliably gathering patient data and measuring the effects of bias, to improving the training of health care providers, from medical school onwards. This kind of training could assure the clinicians are aware and acknowledge the impact of biases and are equipped with the tools to overcome their own.
Redmond and Crear-Perry said the COVID-19 pandemic has laid bare the consequences of structural racism in health care and the society as a whole. From the dearth of testing sites in predominantly minority communities, to the failure in many cities to collect data about race and ethnicity when people did get tested, all have underscored the problem, they said. And looming large, Crear-Perry said, is the faulty assumption that “race is a risk factor for COVID,” rather than brown and Black people’s greater exposure to the virus due to their employment and living conditions.
The effects of all this on pregnant women, the researchers said, have not been lost on them. “We have clearly seen the impact of systemic racism in the location of resources, in residential segregation, and as a result, in who can go to a prenatal care visit when public transportation is shut down,” Redmond said. “It’s hard to make good choices when you’re constrained by the choices you have.”