America is Failing its Black Mothers | Harvard Public Health Magazine | Harvard T.H. Chan School of Public Health

Edward Hoffer ehoffer at GMAIL.COM
Mon Jul 1 23:30:38 UTC 2019

I would point you to a short blog post I wrote on this topic:

Edward P Hoffer MD
Associate Professor of Medicine, part-time, Harvard

On Mon, Jul 1, 2019 at 5:42 PM David L Meyers <dm0015 at> wrote:

> I came across this recent article (below) about the sorry state of
> maternal morbidity and mortality in the US in African-American women. While
> most of us are aware of this problem, it is often framed in terms of the
> impact of racial and other such biases, social determinants of health and
> the human rights crisis that it is. But what is not usually recognized or
> focused on is the role played by diagnostic delays and diagnostic errors
> which significantly contribute to poor outcomes in pregnant women, with the
> additional egregious burdens noted above borne by African-American women.
> This article addresses particularly the experience of African-American
> women, and examples cited in the article include Serena Williams and Shalon
> Irving, prominent African-American women whose stories clearly illustrate
> some of the circumstances noted above related to race. But a point is also
> made that diagnostic errors and delays figured in their cases, factors with
> which we in the improving diagnosis space are very familiar and should be
> addressing.
> Pregnancy is a unique condition with both moms and babies at serious risk
> of harm from errors and delays in recognizing potential and real threats.
> The contribution of diagnostic errors and delays to the sorry state of
> maternal mortality and morbidity in the US deserves greater recognition and
> attention toward efforts to prevent them.
> David
> David L Meyers, MD FACEP
> Society to Improve Diagnosis in Medicine
> Listserv Moderator/Board member
> Save the Dates: Diagnostic Error in Medicine Conference (DEM2019),
> November 10-13, 2019 at Hyatt Regency Washington, DC (Capitol Hill)
> ______________________
> America is Failing its Black MothersFor decades, Harvard Chan alumni have
> shed light on high maternal mortality rates in African American women.
> Finally, policymakers are beginning to pay attention.
> Serena Williams knew her body well enough to listen when it told her
> something was wrong. Winner of 23 Grand Slam singles titles, she’d been
> playing tennis since age 3—as a professional since 14. Along the way, she’d
> survived a life-threatening blood clot in her lungs, bounced back from knee
> injuries, and drowned out the voices of sports commentators and fans who
> criticized her body and spewed racist epithets. At 36, Williams was as
> powerful as ever. She could still devastate opponents with the power of a
> serve once clocked at 128.6 miles per hour. But in September 2017, on the
> day after delivering her baby, Olympia, by emergency C-section, Williams
> lost her breath and recognized the warning signs of a serious condition.
> She walked out of her hospital room and approached a nurse, Williams later
> told *Vogue* magazine. Gasping out her words, she said that she feared
> another blood clot and needed a CT scan and an IV of heparin, a blood
> thinner. The nurse suggested that Williams’ pain medication must be making
> her confused. Williams insisted that something was wrong, and a test was
> ordered—an ultrasound on her legs to address swelling. When that turned up
> nothing, she was finally sent for the lung CT. It found several blood
> clots. And, just as Williams had suggested, heparin did the trick. She told
> *Vogue*, “I was like, listen to Dr. Williams!”
> But her ordeal wasn’t over. Severe coughing had opened her C-section
> incision, and a subsequent surgery revealed a hemorrhage at that site. When
> Williams was finally released from the hospital, she was confined to her
> bed for six weeks.
> Wanda Irving holds her granddaughter, Soleil, in front of a portrait of
> Soleil’s mother, Shalon Irving, at home in Sandy Springs, Georgia. Wanda
> has been raising Soleil since Shalon—an epidemiologist with the U.S.
> Centers for Disease Control and Prevention—died in 2017 from complications
> of hypertension a few weeks after giving birth.
> Like Williams, Shalon Irving, an African American woman, was 36 when she
> had her baby in 2017. An epidemiologist at the U.S. Centers for Disease
> Control and Prevention (CDC), she wrote in her Twitter bio, “I see inequity
> wherever it exists, call it by name, and work to eliminate it.”
> Irving knew her pregnancy was risky. She had a clotting disorder and a
> history of high blood pressure, but she also had access to top-quality care
> and a strong support system of family and friends. She was doing so well
> after the C-section birth of her baby, Soleil, that her doctors consented
> to her request to leave the hospital after just two nights (three or four
> is typical). But after she returned home, things quickly went downhill.
> For the next three weeks, Irving made visit after visit to her primary
> care providers, first for a painful hematoma (blood trapped under layers of
> healing skin) at her incision, then for spiking blood pressure, headaches
> and blurred vision, swelling legs, and rapid weight gain. Her mother told
> ProPublica that at these appointments, clinicians repeatedly assured Irving
> that the symptoms were normal. She just needed to wait it out. But hours
> after her last medical appointment, Irving took a newly prescribed blood
> pressure medication, collapsed, and died soon after at the hospital when
> her family removed her from life support.
> Viewed up close, the deaths of mothers like Irving are devastating,
> private tragedies. But pull back, and a picture emerges of a public health
> crisis that’s been hiding in plain sight for the last 30 years.
> Following decades of decline, maternal deaths began to rise in the United
> States around 1990—a significant departure from the world’s other affluent
> countries. By 2013, rates had more than doubled. The CDC now estimates that
> 700 to 900 new and expectant mothers die in the U.S. each year, and an
> additional 500,000 women experience life-threatening postpartum
> complications. More than half of these deaths and near deaths are from
> preventable causes, and a disproportionate number of the women suffering
> are black.
> Put simply, for black women far more than for white women, giving birth
> can amount to a death sentence. African American women are three to four
> times more likely to die during or after delivery than are white women.
> According to the World Health Organization, their odds of surviving
> childbirth are comparable to those of women in countries such as Mexico and
> Uzbekistan, where significant proportions of the population live in poverty.
> Irving’s friend Raegan McDonald-Mosley, chief medical director for Planned
> Parenthood Federation of America, told ProPublica, “You can’t educate your
> way out of this problem. You can’t health-care-access your way out of this
> problem. There’s something inherently wrong with the system that’s not
> valuing the lives of black women equally to white women.”
> *Lost mothers*
> Speaking at a symposium hosted by the Maternal Health Task Force at the
> Harvard T.H. Chan School of Public Health in September 2018, investigative
> reporter Nina Martin noted telling commonalities in the stories she’s
> gathered about mothers who died. Once a baby is born, he or she becomes the
> focus of medical attention. Mothers are monitored less, their concerns are
> often dismissed, and they tend to be sent home without adequate information
> about potentially concerning symptoms. For African American mothers, the
> risks jump at each stage of the labor, delivery, and postpartum process.
> Neel Shah, an obstetrician-gynecologist at Beth Israel Deaconess Medical
> Center in Boston and director of the Delivery Decisions Initiative at
> Ariadne Labs, recalls being struck by Martin’s ProPublica-NPR series Lost
> Mothers, which delved into the issue. “The common thread is that when black
> women expressed concern about their symptoms, clinicians were more delayed
> and seemed to believe them less,” he says. “It’s forced me to think more
> deeply about my own approach. There is a very fine line between clinical
> intuition and unconscious bias.”
> For members of the public, the experiences of prominent black women may
> prove to be a teachable moment. When pop superstar Beyoncé developed the
> hypertensive disorder pre-eclampsia—which left untreated can kill a mother
> and her baby—after delivering her twins by emergency C-section in 2017,
> Google searches related to the condition spiked. According to the U.S.
> Agency for Healthcare Research and Quality, pre-eclampsia—one of the
> leading causes of maternal death—and eclampsia (seizures that develop after
> pre-eclampsia) are 60 percent more common in African American women than in
> white women, and also more severe. If it can happen to Beyoncé—an
> international star who presumably can afford the highest-quality medical
> care—it can happen to anyone.
> *Weathering report*
> Arline Geronimus, SD ’85, has been talking about the effects of racism on
> health for decades, even when others haven’t wanted to listen. Growing up
> in the 1960s in Brookline, Massachusetts, Geronimus, who is white, absorbed
> the messages of the Civil Rights movement and the harrowing stories of her
> Jewish family’s experiences in czarist Russia. When she headed off to
> Princeton as an undergraduate, she resolved to find a way to fight against
> injustice. Her initial plan to become a civil rights lawyer gave way when
> she discovered the power and potential of public health research.
> Geronimus worked as a research assistant for a professor studying teen
> pregnancy among poor urban residents, and, as a volunteer at a Planned
> Parenthood clinic, witnessed close-up the lives of pregnant black teens
> living in poverty in Trenton, New Jersey. She felt a chasm open up between
> what some of her white male professors were confidently explicating about
> the lives of these adolescents and how the young women themselves saw their
> lives.
> [image: Arline Geronimus]Arline Geronimus, SD ’85
> According to the conventional wisdom at the time, Geronimus says, teen
> pregnancy was the primary driver of maternal and infant deaths and a host
> of multigenerational health and social problems among low-income African
> Americans. Researchers focused on this issue while ignoring broader
> systemic factors.
> Geronimus sought to connect the dots between the health problems the girls
> experienced, like asthma and type 2 diabetes, and negative forces in their
> lives. She visited them in their crumbling apartments and accompanied them
> to medical appointments where doctors treated the girls like props, without
> agency in their own care. And she noticed that they seemed older, somehow,
> than girls the same age whom Geronimus knew.
> “That’s when I got the fire in my belly,” she says, her voice rising.
> “These young women had real, immediate needs that those of us in the
> hallowed halls of Princeton could have helped address. But we weren’t
> seeing those urgent needs. We just wanted to teach them about
> contraception.”
> Geronimus came to the Harvard Chan School to learn how to rigorously
> explore the ways that social disadvantage corrodes health—a concept for
> which she coined the term “weathering.” Her adviser, Steven Gortmaker,
> professor of the practice of health sociology, provided data for her to
> correlate infant mortality by maternal age. While most such studies put
> mothers into broad categories of teen and not-teen, Geronimus looked at the
> risks they faced at every age. The results were surprising even to her.
> White women in their 20s were more likely to give birth to a healthy baby
> than those in their teens. But among black women, the opposite was true:
> The older the mother, the greater the risk of maternal and newborn health
> complications and death. In public health, the condition of a baby is
> considered a reliable proxy for the health of the mother. Geronimus’ data
> suggested that black women may be less healthy at 25 than at 17.
> “Being able to see those stark numbers was essential for me,” says
> Geronimus, who is now a professor of health behavior and health education
> at the University of Michigan School of Public Health and a member of the
> National Academy of Medicine. And the implications were staggering. If
> young black women were already showing signs of weathering, how would that
> play out over the rest of their lives—and what could be done to stop it?
> Geronimus’ questions were ahead of their time. The press and the
> public—even other scientists—misinterpreted her findings as a
> recommendation that black women have children in their teens, she says,
> recalling with a sigh such clueless headlines as, “Researcher says let them
> have babies.”
> In the 1970s, even researchers who broached the topic of racial
> differences in health outcomes—and few did—focused on small pieces of the
> puzzle. Some were looking at genetics, others at behavioral and cultural
> differences or health care access. “No one wanted to look at what was wrong
> with how our society works and how that can be expressed in the health of
> different groups,” Geronimus says. Over time, her ideas would become harder
> to dismiss.
> The tide began to turn in the early 1980s, when former Health and Human
> Services Secretary Margaret Heckler convened the first group of experts to
> conduct a comprehensive study of the health status of minority populations.
> As the field of social epidemiology took off, the *Report of the
> Secretary’s Task Force on Black and Minority Health* (also known as the
> Heckler Report) brought Geronimus’ animating questions into mainstream
> debate.
> Then, in 1993, researchers identified a physiological mechanism that could
> finally explain weathering: allostatic load. “We as a species are designed
> to respond to threats to life by having a physiological stress response,”
> Geronimus explains. “When you face a literal life-or-death threat, there is
> a short window of time during which you must escape or be killed by the
> predator.” Stress hormones cascade through the body, sending blood flowing
> to the muscles and the heart to help the body run faster and fight harder.
> Molecules called pro-inflammatory cytokines are produced to help heal any
> wounds that result.
> These processes siphon energy from other bodily systems that aren’t
> enlisted in the fight-or-flight response, including those that support
> healthy pregnancies. That’s not important if the threat is short term,
> because the body’s biochemical homeostasis quickly returns to normal. But
> for people who face chronic threats and hardships—like struggling to make
> ends meet on a minimum wage job or witnessing racialized police
> brutality—the fight-or-flight response may never abate. “It’s like facing
> tigers coming from several directions every day,” Geronimus says, and the
> damage is compounded over time.
> As a result, health risks rise at increasingly younger ages for chronic
> conditions like hypertension and type 2 diabetes. Depression and sleep
> deprivation become more common. People are also more likely to engage in
> risky coping behaviors, such as overeating, drinking, and smoking.
> Geronimus’ foundational work in the 1980s and 1990s has been cited by
> David R. Williams, the Florence Sprague Norman and Laura Smart Norman
> Professor of Public Health at the Harvard Chan School, an internationally
> recognized expert in the ways that racism and other social influences
> affect health. His Everyday Discrimination Scale is one of the most widely
> used measures of discrimination in health studies. It includes questions
> that measure experiences such as being treated with discourtesy, receiving
> poorer service than others in restaurants or stores, or witnessing people
> act as if they’re afraid of you. As he explained in a 2016 TEDMED talk,
> “This scale captures ways in which the dignity and the respect of people
> who society does not value is chipped away on a daily basis.”
> *Maternal Mortality in the U.S.: A Human Rights Crisis*
> Despite high-tech medical advances of the last century, women around the
> world are still dying in pregnancy and childbirth from age-old scourges
> such as hemorrhage and pre-eclampsia and, increasingly, from complications
> related to chronic diseases, obesity, and advanced maternal age.
> In 2000, the global health and development community acknowledged the need
> for action in Goal 5 of the U.N. Millennium Development Goals, which aimed
> to reduce maternal deaths by three-quarters in 15 years (it declined by 45
> percent). While press and publicity around the push offered harrowing
> stories, women reading these stories in the U.S. may well have come away
> believing that it was a problem for mothers in villages in Sierra Leone—but
> surely not in Atlanta or Washington, D.C.
> Starting in 2008, human rights groups around the world began calling on
> the U.S. to do more to keep its mothers from dying. The United Nations
> Committee on the Elimination of Racial Discrimination (CERD) expressed
> concern about inequities in maternal mortality and recommended that steps
> be taken to improve access to maternal health care, family planning, and
> sexuality education and information.
> A 2012 Amnesty International report declared that these steps weren’t
> enough: “Preventable maternal mortality can result from or reflect
> violations of a variety of human rights, including the right to life, the
> right to freedom from discrimination, and the right to the highest
> attainable standard of health.” Having ratified two key international
> treaties guaranteeing these rights, the authors wrote, the U.S. government
> should be held accountable.
> Four years later, representatives from the advocacy organization
> SisterSong, the Center for Reproductive Rights, and National Latina
> Institute for Reproductive Health issued a report to CERD further exploring
> these issues. CERD adopted the groups’ recommendations, including
> addressing stereotypes that promote discrimination in clinical settings and
> standardizing data collection on maternal deaths. In 2015, an advocacy
> organization called Black Mamas Matter emerged out of this effort to keep
> pushing the agenda forward.
> To the women leading the charge, one central fact was clear: Racism is an
> undeniable thread running through the stories of black mothers who die. But
> as Elizabeth Dawes Gay, co-director of Black Mamas Matter and a public
> health professional, wrote in *The Nation*, providers and researchers
> often place “the onus for large-scale change on individuals rather than the
> systems that we know cause harm.”
> *The telomere connection*
> In the early 2000s, research on telomeres—protective caps on
> chromosomes—provided further evidence that weathering is not merely a
> metaphor but a biological reality. Each time cells divide, telomeres get a
> little shorter. They eventually reach a point where they can’t divide
> anymore and die. Allostatic load causes cells to divide faster to keep
> repairing themselves. The result is earlier deterioration of organs and
> tissues—essentially, premature aging.
> “This is what I’ve been talking about all along,” Geronimus says.
> “Weathering is a biological response to social factors—a product of your
> lived experience and how that impacts you physiologically. But now, I can
> describe this even more specifically, in terms of physiological mechanisms.
> The emerging science gives the concept of weathering a kind of substance or
> credibility, which has allowed more people to be open to it.”
> Geronimus has incorporated the study of allostatic load and telomere
> length into her own work. She recently led a study of telomere length in
> Detroit among low-income individuals of multiple races and ethnicities. The
> results suggested that community and kin networks may be more protective
> for health than income and education.
> Indeed, in this study population, poor white individuals actually
> experienced more weathering than poor minority populations, and Hispanics
> with more education experienced more weathering than those with less
> education. Social isolation and feeling estranged from one’s community,
> whether because of occupational or educational differences, along with
> everyday exposure to discrimination in new, predominantly white,
> middle-class contexts—in popular lingo, being “othered”—may explain these
> outcomes, Geronimus says.
> She hopes to dig further into this line of inquiry, to find out which
> social stressors matter the most for health, how they can be disrupted, and
> how the scientific findings can be turned into policy. “If someone is
> experiencing weathering because of the discrimination they face in their
> lives,”  she says, “the solution is not just to tell them to get more
> exercise.”
> That Geronimus’ ideas have become mainstream in the field was evident at
> the 23rd Annual HeLa Women’s Health Symposium, held in September 2018 at
> Morehouse School of Medicine, in Atlanta. This year’s event focused on
> maternal health disparities, and Geronimus’ findings bubbled up in the
> talks of many speakers. Researchers and advocates said that a key part of
> reducing maternal deaths was addressing the societal conditions that affect
> women’s health throughout their lives, like housing, air quality, and
> nutrition. One of those speakers was a fellow Harvard Chan alumna and a
> public health professional who was in a position to make a difference.
> *Finding stories in statistics*
> When she was growing up in a military family in California’s San Fernando
> Valley, Wanda Barfield, MPH ’90, a rear admiral in the U.S. Public Health
> Service and director of the Division of Reproductive Health at the CDC, was
> the kind of kid who would tend to an injured squirrel that fell out of a
> palm tree. She could never turn away a creature in distress, she says, and
> often had a stray dog or cat at home under her care. Veterinary medicine
> seemed like an obvious career path, but as an undergraduate at the
> University of California–Irvine, she learned about another vulnerable
> population in need of her big heart.
> Wanda Barfield, MPH ’90, director of the Division of Reproductive Health,
> U.S. Centers for Disease Control and Prevention
> Black babies were twice as likely to die within their first year as white
> babies, Barfield read in the Heckler Report. That insight was life-changing.
> Barfield, who is African American, had grown up largely protected from the
> harsh realities of U.S. health inequities. Her dad was in the Navy’s
> submarine service, a job that came with secure housing and high-quality,
> accessible health care for his family. Reading the government report
> completely altered her perspective, and volunteering in a neonatal
> intensive care unit (NICU) sealed the deal. “I knew I wanted to care for
> babies and somehow close the gap,” she says. “As I started learning more
> about working in the NICU, I realized that a baby’s health is related to
> the health of the mother, and that the health of the mother is related to
> her community and to the circumstances of her life. I learned that the
> social determinants of health mattered in very real and concrete ways.”
> Barfield entered Harvard Medical School in 1985, one of just 24 students
> selected to participate in a new approach to medical education focused on
> problem solving and early patient interaction. Encouraged to take time off
> before her last year of medical school to earn an MPH at the Harvard Chan
> School, Barfield researched infant health outcomes in military families.
> Overall, African American babies in this population were healthier compared
> with babies in the general African American population, and their birth
> weights were higher.
> One factor that may have made a difference: better access to care, which
> included more frequent prenatal visits. But Barfield notes that access is
> just a small piece of the overall health care women receive. More women are
> going into pregnancy with diabetes, hypertension, and overweight, she says,
> and these can threaten pregnancy.
> But health care is not just a matter of scheduling an appointment. Mary
> Wesley, DrPH ’18, an epidemiologist and health services consultant working
> with the Mississippi State Department of Health, organized data from a
> series of focus groups held with mothers across the state in 2013. Some
> women reported that they avoided prenatal care because of the way they were
> treated by providers. These women, many of whom were low-income or lived in
> rural areas, wanted more education about caring for themselves and their
> babies but were limited in their choice of providers. If they felt
> disrespected or unheard in the examining room, there was nowhere else to go.
> The CDC currently collects the death certificates of all women who died
> during pregnancy or within a year of pregnancy. The information is
> voluntarily provided by the health departments in all 50 states, New York
> City, and Washington, D.C. But the information is limited, and there is no
> national standard.
> Barfield and others in the field are pushing for wider adoption of
> Maternal Mortality Review Committees (MMRCs), now operating in about 30
> states. Every time a mother dies, these volunteer expert panels meet to
> review official data as well as other information about the mother’s life,
> such as media stories or her social media postings. The goal is to identify
> what went wrong and to develop guidelines for action. In Georgia, for
> example, where the country’s maternal death rates are highest, the
> committee has found records of women who developed hypertension during
> pregnancy and didn’t receive medication soon enough, women who died waiting
> for unavailable ambulances, and women whose providers didn’t understand
> warning signs that led to a hemorrhage, just to name a few gaps in the
> system. “We need these stories to save women’s lives,” Barfield says.
> Data that Barfield and her colleagues at the CDC are gathering through a
> new system called MMRIA (Maternal Mortality Review Information
> Application)—pronounced “Maria”—may help identify other under-recognized
> barriers to safe delivery. MMRIA pulls stories together and looks for
> trends. In its first report, published in January 2018, data from nine
> states found that the reasons women died varied by race. White mothers were
> less likely to have died from pre-eclampsia than black mothers, and more
> likely to have died from mental health issues, including postpartum
> depression and drug addiction. Barfield hopes to find out whether these
> results are true across a broader population and is working on expanding
> the system. Ideally, MMRCs will amass more fine-grained information about
> the conditions of lost mothers’ lives, so that researchers can understand
> how to stop these untimely, heartbreaking—and largely preventable—deaths.
> “A maternal death is more than just a number or part of a count,” says
> Barfield. “It is a tragedy that leaves a hole in a family. It is a story
> that often includes missed opportunities, both inside and outside of the
> hospital. It’s important to find out why women are dying so we can prevent
> the circumstances leading to their death.”
> *The Black Women’s Health Study*
> Every two years, participants in the Black Women’s Health Study (BWHS), an
> ongoing cohort study of  59,000 black women, are sent questions about their
> health, their habits, and various experiences in their lives. Some of the
> questions, including several from the Everyday Discrimination Scale
> (developed by the Harvard Chan School’s David Williams, see page 20), have
> focused on their perceptions of the discrimination they experience. Now in
> its 23rd year, the BWHS is the largest cohort study focused on black
> women’s health.
> The study was launched by Harvard Chan School alumnae Julie Palmer, ScD
> ’88, and Lynn Rosenberg, SM ’72, ScD ’78, both professors at the Slone
> Epidemiology Center of Boston University. Noting that the scientifically
> productive Nurses’ Health Studies included mostly white women, they felt it
> was important to gather similarly robust data on the health of African
> American women.
> It took a few years before funding agencies were on board. “They weren’t
> convinced of the value of a study that only included black women and didn’t
> have a comparison group,” Palmer says. “But we wanted the whole study
> population to be black women so that we would have as much statistical
> power as possible. We wanted to study exposure and disease relationships in
> black women, rather than using resources for a comparison with white women.”
> With the National Cancer Institute as a major sponsor, breast cancer
> emerged as an early area of focus. Researchers already recognized that
> while black women and white women have a similar chance of developing
> breast cancer, black women are 40 percent more likely to die from the
> disease. Today, they know that black women are more likely than white women
> to develop the most aggressive and less treatment-responsive form of breast
> cancer, known as estrogen-receptor-negative, or ER-. Exactly why remains a
> burning question and is being addressed in BWHS research. Palmer led a
> collaborative analysis of pregnancy data from the BWHS and three other
> large studies of breast cancer, finding that childbearing without
> breastfeeding leads to an increased risk of ER- breast cancer. For
> complicated reasons, breastfeeding is markedly less common among black
> mothers in the U.S. than in other mothers.
> In a line of research separate from BWHS, Nancy Krieger, professor of
> social epidemiology at the Harvard Chan School, found that early-life
> exposure to Jim Crow laws—which legalized racial discrimination in Southern
> U.S. states from the late 1870s through the mid-1960s—was associated with
> negative health effects decades later. Among U.S. women currently diagnosed
> with breast cancer, being born in a Jim Crow state raised black women’s
> risk of being diagnosed with ER- breast tumors.
> BWHS investigators are also exploring other conditions that are uncommon
> in the general population but have emerged in striking numbers in black
> women, including sarcoidosis, a connective tissue disorder. “We didn’t ask
> about it; none of us had heard of it,” Palmer says. “On the first
> questionnaire, we had two write-in spots for other conditions, and a few
> hundred women wrote in sarcoidosis.” A literature search showed it was more
> common in blacks than whites and in women than men. One researcher, Yvette
> Cozier, has made it one of her primary areas of investigation. As Palmer
> says, “That wouldn’t have happened without 59,000 black women telling us
> about their health concerns.”
> She adds that an African American student working on the study had a
> preterm birth around the same time that several white women on the team had
> normal births. The team had already been looking into the effects of
> discrimination on health—but the student’s unsettling experience was a
> striking reminder of why the research is important.
> *Saving mothers *
> Will this growing body of data attesting to black women’s increased risk
> of death during and after childbirth shape policymaking? Researchers want
> to see a broad range of changes in health care culture, in public health
> information gathering, and in society at large. As Neel Shah and Boston
> University’s Eugene Declercq noted in an August 2018 editorial in STAT,
> maternal deaths are a “canary in the coal mine for women’s health.” Shah
> added in a recent interview: “Efforts by clinicians and hospitals to
> improve maternity care are essential. But we can’t solve the problem of
> maternal deaths unless we acknowledge that women’s health isn’t something
> to be concerned about only during pregnancy and then disregarded after the
> baby is born.”
> In 2017, Shah started a national March for Moms to raise public awareness
> around maternal health. Through his work with Ariadne Labs, he is piloting
> new approaches to the birth process that ensure that mothers are empowered
> to make decisions about their care, including a labor and delivery planning
> whiteboard that helps track mothers’ preferences, health conditions, and
> birth progress. He says that work is under way on a program to improve
> community support for mothers during the critical first year after
> childbirth by galvanizing city governments to coordinate and develop
> resources.
> Along similar lines, the Mississippi State Department of Health offers
> programs that address issues of quality in care that moms referred to in
> the  focus group discussions, says Mary Wesley. One example is the
> department’s Perinatal High Risk Management/Infant Services System, a
> multidisciplinary case management program for Medicaid-eligible, high-risk
> pregnant and postpartum women and their babies less than 1 year old. The
> program includes enhanced services with home visits, health education, and
> psychosocial support for nutritional and mental health needs.
> Arline Geronimus takes a wider view of the issue, arguing that the
> solution to racial inequities in maternal mortality is to change the way
> society works. In the near term, she says, race should regularly be taken
> into consideration during prenatal risk screenings, because even younger
> black women could be at increased risk of pregnancy complications. Risk
> status by maternal age should be reappraised in context, as well. While
> most women in their 20s and early 30s are considered low-risk, black women
> may be weathered and biologically older than their chronological age, she
> said, which makes them more subject to health complications at younger ages.
> This is true even among highly educated or professional women, such as
> Serena Williams or Shalon Irving. The danger of failing to recognize the
> effects of weathering in black women of higher socioeconomic position can
> be compounded. That’s because the U.S. lacks policies that support women
> who want both careers and parenthood, a gap that can lead professional
> women to postpone childbearing until their late 30s or 40s. According to
> Geronimus, “As a group, black mothers in their mid- to late 30s have five
> times the maternal mortality rate of black teen mothers, although the older
> mothers generally have greater educational or economic resources and access
> to health care.”
> Ana Langer, professor of the practice of public health and coordinator of
> the School’s Women and Health Initiative, points out that the 2010 Amnesty
> International report *Deadly Delivery: The Maternal Health Care Crisis in
> the USA*, contained a shocking fact: Most women in the U.S. weren’t dying
> during childbirth because of the complexity of their health conditions, but
> because of the barriers they faced in accessing high-quality maternal
> care—particularly those who were poor or faced racial discrimination.
> *Video: Black moms share their stories
> <>*
> In general, maternal mortality in the U.S. receives scant attention,
> Langer adds, in part because there are relatively few deaths each year
> compared with other conditions, and also because there are no important
> business opportunities related to conditions that don’t require
> sophisticated drugs or technologies. But she bluntly suggests an additional
> reason: “Women—particularly those who are most vulnerable due to their
> race, age, or socioeconomic status—receive less attention overall for their
> health issues, compared to men. On a positive note, the attention on gender
> and sex gaps and social determinants of health in research and care is
> rapidly increasing. This is the time to build on this growing momentum to
> increase the efforts to improve maternal health in the U.S.”
> In an April 2018 Rewire News story, Elizabeth Dawes Gay, of Black Mamas
> Matter, directly addressed the racial disparities element in maternal
> mortality: “Those of us who want to stop black mamas from dying
> unnecessarily have to name racism as an important factor in black maternal
> health outcomes and address it through strategic policy change and culture
> shifts. This requires us to step outside of a framework that only looks at
> health care and consider the full scope of factors and policies that
> influence the black American experience. It requires us to examine and
> dismantle oppressive and discriminatory policies. And it requires us to
> acknowledge black people as fully human and deserving of fair and equal
> treatment and act on that belief.”
> As Linda Blount, of the Black Women’s Health Imperative, noted during the
> Morehouse symposium, “Race is not a risk factor. It is the lived experience
> of being a black woman in this society that is the risk factor.”
> Serena Williams understands that. She told the BBC that she had received
> excellent care overall for her postpartum complications. But then she
> pulled back the lens. “Imagine all the other women,” she said, who “go
> through that without the same health care, without the same response.”
> *Amy Roeder is associate editor of *Harvard Public Health*.*
> *Photos: Getty Images, Becky Harlan/NPR, Brian Lillie/University of
> Michigan, U.S. Centers for Disease Control and Prevention*
> *Illustrations: Benjamin S. Wallace/Harvard Chan School*
> ------------------------------
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> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
> Medicine
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine

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