A week before Mother’s Day, maternal health advocates gathered on the National Mall for the March for Moms. Providers, advocates, and, most importantly, mothers shared their perspectives on the policy and practice changes necessary to reduce the US’s shameful maternal mortality rate and appalling racial disparities. (See my tweetsfor quotes from speakers, and details from a week’s worth of advocacy at #MarchforMoms.)

Two of the March for Moms speakers who affected me the most shared personal stories: Charles Johnson described how he and his wife Kira Dixon Johnson waited hours for a CT scan when she felt seriously unwell after a cesarean delivery. Previously in excellent health, she died after bleeding internally for 10 hours – during which time Johnson heard “your wife isn’t a priority right now” when he asked when the scan would happen. “Kira deserved better,” Johnson told the crowd. “Women all over this country deserve better.”

Marie McCausland experienced symptoms of preeclampsia, which can be fatal, but the ER doctor wanted to send her home despite her dangerously high blood pressure. The reason she stayed and persisted – and eventually got appropriate care – was that she’d read the ProPublica/NPR Lost Mothers series and knew that providers sometimes erroneously dismiss symptoms of serious complications, with fatal consequences. And as Renee Montagne’s latest piece for the Lost Mothers series points out, many women avoid death after suffering severe complications, but face substantial physical and emotional tolls from their ordeals.

Policy solutions

Many of those who attended and spoke at the March for Moms spent the next week on Capitol Hill and in other venues advocating for policies to improve maternal health. The following bills have been introduced in Congress:

• Improving Access to Maternity Care Act (H.R.315/S.783, introduced by Rep. Michael Burgess & Sen. Tammy Baldwin) would require the Health Resources and Services Administration (HRSA) to identify health professional shortage areas for purposes of assigning maternity care health professionals to them.
• Maternal Health Accountability Act of 2017 (S.1112, introduced by Sen. Heidi Heitkamp & Sen. Shelley Moore Capito) would expand the use of maternal mortality review committees that several states have launched to investigate maternal deaths and generate lessons to improve safety.
• Preventing Maternal Deaths Act of 2017 (H.R.1318, introduced by Rep. Jaime Herrera Butler, Rep. John Conyers, Rep. Ryan Butler, and Rep. Diana DeGette) would provide funds for states to establish maternal mortality review committees and promote national efforts to share findings through CDC. The 4Kira4Moms campaign, founded to prevent other mothers from suffering the kind of poor treatment that Kira Johnson did, supports this bill.
• FAMILY Act (S.337/H.R.947, introduced by Sen. Kirsten Gillibrand and Rep. Rosa DeLauro), would create a payroll tax-funded social insurance system for paid medical and family leave (I wrote about it here.)
• Mothers and Offspring Maternal Mortality Awareness (MOMMA) Act (just introduced by Rep. Robin Kelly) would extend Medicaid eligibility for one year postpartum (the current federal requirement is for just 60 days) and support the Alliance for Innovation in Maternal Health.

Several states – some citing the Lost Mothers series – have already established maternal mortality review committees, and a California collaborative that’s helped reduce the state’s maternal death rate shows how such reviews can lead to changes that improve survival.

Provider shortages and/or a lack of insurance coverage for services make it difficult for women in some places to get appropriate care. Research suggests that greater use of midwives improve outcomes, and that midwives can play particularly important roles in rural areas, but many states restrict midwives’ practice. Continuous support from providers such as doulas can also improve maternal outcomes, a recent Cochrane review concluded. Minnesota and Oregon currently allow Medicaid coverage of doula services, and New York is launching a pilot program of Medicaid coverage for doulas as part of efforts to reduce high mortality in black mothers.

The American College of Obstetricians and Gynecologists just released a committee opinion on optimizing postpartum care that recommends all women have contact with an obstetric care provider within three weeks postpartum and a comprehensive postpartum visit that includes “a full assessment of physical, social, and psychological well-being” within 12 weeks. “To optimize the health of women and infants, postpartum care should become an ongoing process, rather than a single encounter, with services and support tailored to each woman’s individual needs,” the opinion recommends. ProPublica’s Nina Martin contrasts this vision to what’s currently typical:

The way that providers currently care for pregnant women and infants versus new mothers exemplifies this difference. During the prenatal period, a woman may see her OB-GYN a dozen or more times, including at least two checkups during her ninth month. Her baby’s first pediatric visit usually occurs a few days after birth. But the mother may not have a follow-up appointment with her own doctor until four to six weeks after delivery — and in many cases, insurance only covers one visit. “As soon as that baby comes out, [the mom] is kind of an afterthought,” said Tamika Auguste, associate medical director of the MedStar Health Simulation Training & Education Lab in Washington, D.C., and a co-author of the ACOG opinion.

For working mothers, having to wait four to six weeks makes it harder to arrange a check-up.

Some 23 percent of mothers employed outside the home are back on the job within 10 days of giving birth, a 2014 report for the U.S. Department of Labor found; another 22 percent return to work within 40 days. Lack of childcare and transportation can also present significant hurdles to accessing care. According to ACOG, as many as 40 percent of women skip their postpartum visit; for low-income women of color, the rates are even higher.

Changing insurer reimbursement policies to assure that women can see a provider multiple times during the “fourth trimester” (the 12 weeks after birth) is an important step, but mothers also need to have childcare, transportation, and paid leave to truly have access to the kind of comprehensive postpartum care ACOG recommends.

The impacts of racism

Legislation and changes to healthcare delivery can achieve a lot, but to eliminate the unacceptable racial disparities in maternal health we’re also going to have address racism. In the New York Times Magazine piece “Why America’s Black Mothers and Babies Are in a Life-or-Death Crisis,” Linda Villarosa weaves together her own experiences with the story of one black mother, Simone Landrum, and a discussion of the research into racial disparities in maternal and infant health. She writes:

Though it seemed radical 25 years ago, few in the field now dispute that the black-white disparity in the deaths of babies is related not to the genetics of race but to the lived experience of race in this country. In 2007, David and Collins published an even more thorough examination of race and infant mortality in The American Journal of Public Health, again dispelling the notion of some sort of gene that would predispose black women to preterm birth or low birth weight. To make sure the message of the research was crystal clear, David, a professor of pediatrics at the University of Illinois, Chicago, stated his hypothesis in media-friendly but blunt-force terms in interviews: “For black women,” he said, “something about growing up in America seems to be bad for your baby’s birth weight.”

Following this piece’s publication, the New York Times Magazine collected some of the stories it heard from black mothers in response. Two of the women who experienced severe symptoms after giving birth were dismissed by their providers, and they might not have survived if they hadn’t had access to resources that not everyone can call upon. After being brushed off by her obstetrician and anesthesiologist, emergency-department doctor Joneigh Khaldun had to talk to her own fellow resident and get a CT scan in her own ER to have her life-threatening brain bleed diagnosed. Harvard PhD student Whitney Polk received initial care for post-partum preeclampsia but didn’t get sufficient treatment for her cardiovascular problems until she emailed a cardiologist she found through a peri-partum cardiomyopathy Facebook group. “If I didn’t have my Harvard email address, I often wonder if he would have emailed me so quickly,” she related.

Racism both inside and outside the healthcare setting harms black mothers, explains Elizabeth Dawes Gay, who chairs the steering committee of the Black Mamas Matter Alliance. She writes:

Racial discrimination within the health-care setting is a modern problem built on the legacy of slavery, reproductive oppression, and control of medicine and black bodies. It’s important to remember that the white medical establishment worked hard to eliminate black midwives through smear-messaging campaigns claiming they were “dirty” and by passing laws restricting their practice. Today racial discrimination in clinical care presents in a variety of ways. Research has shown that implicit racial bias may cause doctors to spend less time with black patients and that black people receive less-effective care. Doctors are also more likely to underestimate the pain of their black patients. And anecdotes of disrespect and mistreatment abound.

… Beyond that, racism outside of the clinical setting is a much broader problem that influences health even before people can interact with the health-care system. Black people experience chronic stress resulting from exposure to overt and covert racism and micro-aggression, which can range from something as basic as intentionally avoiding eye contact to the extreme of being harassed, abused, or killed by police. And racist policies—like those dictating where our children go to school, whether we can vote, how clean the water in our communities needs to be, who patrols our neighborhoods, and on and on—create structural inequalities that disadvantage black people and set us up to fail.

The chronic stress arising from racial discrimination and racist policies targeting those both black and female takes a toll on the body and disrupts normal biological processes necessary for optimal health. Decades of research has established a link between stress and health, specifically the negative health consequences of living while black in America, regardless of socioeconomic status.

The Black Mamas Matter Alliance offers a toolkit that brings together evidence on this topic with an extensive list of policy solutions. At the end of Black Maternal Health Week, which took place for the first time April 11-17, 2018, they urged three actions: Listen to Black Women, Trust Black Women, and Invest in Black Women. Some hospitals are training providers to recognize and correct their own racism, while practices like Birth Place, founded by midwife Jennie Joseph, provide models of accessible care that emphasizes respect and consideration. To truly ameliorate racism’s effects on health, though, we’ll also have to acknowledge and address structural racism, including “social segregation, immigration policies, and the intergenerational transfer of assets and liabilities.”

As long as the administration in office is adopting policies that harm women and people of color, it will be an uphill struggle to reduce maternal mortality and eliminate racial disparities in maternal outcomes. Nonetheless, the advocacy on display at the March for Moms and the work occurring in communities and institutions across the country shows promise for improving mothers’, and especially black mothers’, health and wellbeing.