In HLTH 385W: Health Writing and Narratives, created by Maryn McKenna, CSHH student Egan Kattenberg writes a news feature piece on how COVID is affecting those pursuing higher learning.
Racism and Injustice: Undermining Reproductive Health and the Lives of Black Mothers
It was October 20, 2020. Dr. Chaniece Wallace and her husband Anthony were racing to Indiana University Hospital where Chaniece had just completed her training as the chief resident in pediatrics. She was 30 years old, 36 weeks pregnant and beginning to take the next step in a career as a pediatrician. A few days earlier at a routine prenatal appointment, Chaniece alerted her doctor that she was having severe abdominal pain, with pain localized near her liver. Her abdominal pain and a spike in blood pressure prompted her physician to diagnose her with preeclampsia, a life-threatening condition that occurs late in pregnancy and can lead to organ failure and seizures. Chaniece’s preeclampsia symptoms worsened rapidly, urging a trip to the emergency room.
Chaniece underwent an emergency Caesarean section, delivering the Wallaces’ first baby, Charlotte Azaela. Charlotte was born four weeks early, a mere 4 lbs 5 oz, but was immediately transferred to the neonatal intensive care unit where she received life-sustaining care.
Chaniece’s liver and kidneys began to fail and she was rushed into additional emergency surgeries. She could not recover from the complications. Chaniece Wallace died on October 24, two days after Charlotte’s birth.
Colleagues and physicians mourned the loss of Chaniece on social media, including Dr. Linda Burke, an OB-GYN, author of pregnancy education books, and advocate for medically underserved pregnant women. “She had EVERYTHING to live for. She worked as a physician in a state that has one of the highest #maternalmortality rates in the country,” Burke tweeted. The American College of Obstetricians and Gynecologists honored Chaniece by taking a moment of silence for racial disparities in maternal deaths during the 2020 Conference on October 30.
Chaniece’s story highlights an alarming trend in the United States healthcare system.
The rate of maternal deaths in the United States is nearly double the rate of other high-income countries and increasing, according to estimates by the Commonwealth Fund. One factor contributing to this horrific statistic is the rise in pre-eclampsia, the direct threat in Chaniece’s case, which has increased by 25 percent over the past two decades in the U.S. But the most significant threat to Chaniece’s pregnancy, and eventually her life, was not the nationwide rise in preeclampsia. The most significant threat was racism.
In the U.S., black women have a 60 percent higher risk of developing preeclampsia than white women, according to the Healthcare Cost Utilization Project. The risk of pregnancy-related death is two to three times higher for black women, according to the CDC. This trend is pervasive throughout education and income levels, where college-educated black mothers die five times more often than college-educated white mothers.
The United States has fostered a social system and healthcare environment in which pregnancy is separate but unequal. For white women, a routine and joyous moment. For black women, a deadly threat.
Zakkiyah Sorensen, a nurse and advocate for reproductive justice, leads outreach for the Collaborative for Reproductive Equity at the University of Wisconsin, promoting research-based policy for access to reproductive care. “It’s not surprising that we’re here,” said Sorensen. “Once you understand the history of how we’ve created our country, we’ve already laid the groundwork for where we are today.” Racism is embedded in every social system due to the consequences of American history. “We started on the premise of white supremacy,” Sorensen added.
This is not solely the result of official neglect; government actions have paid notice to black motherhood for decades, but seldom benefitted them. The 1927 Supreme Court ruling in Buck v. Bell allowed state governments to forcibly sterilize people who were intellectually disabled. Southern states expanded this ruling to anyone deemed unfit to have children, specifically as leverage to control growth in African American communities. States authorized hysterectomies without consent under pseudonyms such as the “Mississippi appendectomy” (a term made famous by the unconsented medical treatment of the civil rights activist Fannie Lou Hamer).
With the rise of the civil rights movement, African Americans and other marginalized communities began pushing back against reproductive coercion. The forced sterilization of two teen-aged sisters in Alabama, Mary Alice and Minnie Relf, led to a 1974 lawsuit, exposing federally-funded sterilization programs for targeting uneducated and minority communities. The Supreme Court ruled in favor of the Relf sisters, restricting funding from these programs and requiring that physicians obtain informed consent before sterilization procedures.
The protection of reproductive rights in the 1970s briefly reduced disparities between black and white maternal deaths, according to the U.S. Department of Health and Human Services. The requirement of informed consent combined with the legalization of abortion in the famous court case, Roe v. Wade helped significantly reduce pregnancy-related deaths due to unsafe abortions and hysterectomies in the mid-1970s.
Women of color continued to push back against reproductive injustice such as restrictions on abortion rights, coercive treatments and the United States’ failure to ratify basic human rights documents for women throughout the 1970s and 1980s. Twelve black women gathered in Chicago in 1994 and wrote a statement in response to President Bill Clinton’s health policy, explaining that it lacked support for reproductive issues that disproportionately affected marginalized communities. These women called themselves the Women of African Descent for Reproductive Justice. And the reproductive justice movement was born.
Reproductive justice organizations formed to protect and advocate for women’s rights to bodily autonomy, to have children or not have children, and to have children in a safe and sustainable environment. Recently, eight reproductive organizations partnered to create the In Our Own Voice: National Black Women’s Reproductive Justice Agenda. These organizations formed this policy initiative to effectively advocate for abortion rights, contraceptive access and comprehensive sex education in state and federal-level policy. The initiative has kept black and ally communities up-to-date on important legislature since 2014.
Meanwhile, conservatives have dominated the U.S. Supreme Court since the 2005 appointment of Chief Justice Roberts. The Roberts Court’s historic disregard for reproductive rights challenges the strides made by the reproductive justice movement and threatens existing rights, such as access to abortion guaranteed in Roe v. Wade. Consider, for example, the 2007 Court ruling in favor of a partial abortion ban with no exception for maternal health, that was passed by Congress over four years earlier.
Now, sitting comfortably with a 6 to 3 majority after President Trump’s appointment of Justice Amy Coney Barrett, the Supreme Court is in an ideal position to challenge or overturn the decision of Roe v. Wade. Ten states have passed trigger laws that will automatically ban all abortions upon the overturn of Roe v. Wade, limiting access to abortion, to clinics that not only perform abortions but also, and more frequently, deliver prenatal care and family planning services to low-income women of color. Limiting access to abortion would likely impact maternal deaths in already marginalized communities, according to the Center for American Progress. Reproductive justice is important now more than ever.
“Given the potential to overturn Roe v. Wade for all of these decades, I think black maternal health is under siege right now,” said Lasha Clarke, an epidemiologist and doctoral fellow at RISE, a reproductive health collaborative housed at Emory University. “It’s getting a lot of attention, but not enough action.”
Advocates are now focusing on the direct causes and potential solutions for reducing racial disparities in maternal deaths.
It is important to point out what the direct causes of racial disparities are not before we begin this discussion on the potential solutions. A direct cause of racial disparities in maternal deaths is not being black. Nor is poverty or a lack of education. Chaniece Wallace was an educated physician living well above the poverty line, yet there was no exception for her. These factors may contribute to the magnitude of the disparity, but the direct cause of racial disparities is the social system that puts black women in this position to begin with.
“The experience of gendered, racial stress turns on various physiological pathways in the body that then create the conditions for things like preterm birth or infant and maternal mortality to be more likely,” said Clarke. Clarke led a multidisciplinary team at Emory University in a study of over 400 pregnant, black women living in Atlanta and found evidence that the biology of preterm birth could be dependent on exposure to racial discrimination. Her dissertation is now expanding on this research to determine the biological relationship between chronic stress caused by racism and birth outcomes.
“Racism is the risk factor,” said Sorensen. “The problem isn’t you. The problem is how racism and the impact of racism affects you.” Sorensen fights for reproductive rights through a collaborative similar to RISE, supporting research-based policies such as access to contraception and abortion, but specifically for Wisconsin.
“Real change is going to come from systems change,” said Sorensen. “People need to change, but waiting for every individual to change is not right.” Systems-level change takes time. Sorensen makes an excellent point that black mothers must not die waiting for the systemic racism and implicit bias to dissipate.
One intermediate solution Sorensen proposes is increasing access to doulas, especially in low-resource communities, such as Medicaid beneficiaries. Increased access to doulas and their emotional support is associated with superior health outcomes during labor. Many reproductive justice organizations support this policy, and even March of Dimes, a non-profit that advocates for prevention of prematurity and infant mortality, issued a statement encouraging public and private insurers to cover doula care in the U.S.
“We can’t say that midwives and doulas are the answer to all of the systemic things that are wrong because that’s putting it all on their shoulders,” Sorensen added. “They are a piece of it, but there are many things that need to change in order for their work to be utilized well.”
Doulas provide nonmedical care for mothers, but physician advocates are also an intermediate solution that can help alleviate racial disparities in maternal deaths. Rachel Azanleko is a public health nurse and champion of state and federal-level maternal health policy, but also a highly educated, black woman who credits her survival through childbirth to her fierce self-advocacy, but also to her physician advocate.
Azanleko was pregnant with her second child when her family moved across the country. While adjusting to her new home and role at Fairfax County Health Department, Azanleko also tirelessly searched for a high-quality OB-GYN to deliver her baby boy. Azanleko and her husband were confident that they had found the best provider in their area.
The first appointment with her new doctor featured a two-hour wait, an impersonal ten-minute conversation and an assigned packet of information for the couple to read, with no assessment of their literacy level or understanding. Follow-up appointments proceeded with a similar level of callousness, carelessness and disregard for red flags such as a previous premature birth and plummeting iron levels, which can cause weakening of the cervix and also lead to premature birth.
At the third pre-natal appointment, after waiting nearly two hours once again, Azanleko voiced her concerns to her physician about his tardiness and the strain it placed on her work schedule as a nurse, as well as his impersonal style of care and refusal to call her by name. She feared for her own life and her son’s. Azanleko scrambled to find another provider and eventually found one who listened to her story and echoed her concerns about prematurity and her low iron levels. Wasting no time, her new provider referred her to a high-risk OB-GYN.
At 17 weeks, Azanleko’s cervix had completely stretched and the baby was ready to be born. Babies born less than 22 weeks have a near-zero percent chance of survival, according to obstetrics research at Tommy’s charity in the U.K. Her new provider sprung into action, performing an emergency procedure that saved her baby’s life, and inevitably, Azanleko’s life as well.
“For me, a black woman, childbirth is like death,” said Azanleko. “I am glad that I left because I don’t even know if I would have survived if I was still with him,” This is the unacceptable reality of how women of color are treated in the U.S. healthcare system.
Azanleko’s physician advocate made the difference for her between life and death in her childbirth experience. Physicians, like doulas, can serve as activists on the front lines of the reproductive justice movement by listening and considering the unique needs of black mothers.
“I am a college-educated, middle-income, black woman and I still have to fight like that for everything,” said Azanleko. “Can you imagine what a non-college-educated, poor black woman is going through?”
Increased access to doulas and physician advocates would help alleviate racial disparities, but Sorensen calls for systems-level change in order to eliminate implicit biases that facilitate racial disparities.
Azanleko proposed Wisconsin state-level policies that exemplify how we can begin to enact systems-level change. Eliminating laws that disproportionately affect people of color is a key step in changing the social system that fosters racial stress. In Wisconsin, one such law is the birth cost recovery policy, which required the cooperation of unmarried mothers, so that child support agencies could collect payment for birth-related costs from the father. If mothers refused to cooperate, the state would revoke the family’s Medicaid benefits, food stamps and other government assistance. Azanleko successfully influenced the elimination of this policy in 2019.
Azanleko also proposed policies to extend Medicaid coverage for mothers one year post-partum and allocate Medicaid funds for housing services. Both of these initiatives are aimed to decrease chronic stress during pregnancy by making resources more available, and ultimately improving maternal health and birth outcomes.
“You can even start with your own health department or hospital,” said Azanleko. “Most of the time, people want to change the state-level policies, but if we look into the small bubble we are working in, there are policies that could be changed that immediately impact black women’s lives.”
Improving black maternal health will require a wholesale change in the social systems of the United States, one in which everyone has a role to play in reducing racial disparities. Childbirth should not be a death sentence. Black mothers deserve to bring children into this world by choice, in the absence of fear, with pride, peace and security.
Student Highlight: Mikahla Gay graduated from Emory in May 2021 with a major in Human Health on a pre-medicine track. She is currently working as a patient transporter at Emory University Hospital alongside working as a medical scribe for Princeton Brain and Spine Neurology Clinic. She is currently applying to medical school and hopes to impact the field of medicine by increasing access and support for marginalized, underserved communities in healthcare, policy and advocacy. She wrote this long news feature for HLTH 385W in fall 2020 in her senior year.