The powerful Black Lives Matter movement has brought recognition to the unnecessary use of force on the Black community and extrajudicial murders of countless people. Extrajudicial use of force is not the only way that Black souls are extinguished though. Reproductive and sexual healthcare are in drastic need of an overhaul, for the disproportionate mortality of Black babies and mothers and for the under-treatment of Black infertility.
The United States began tracking infant mortality rate by race in 1850. In over a century since then that gap, instead of shrinking with modern healthcare and sanitation, has actually GROWN. In 2017, Black newborns had twice the rate of infant mortality compared to the white non-Hispanic population. Black newborn infants die three times as often when taken care of by a white doctor than by a Black doctor. Additionally, Black women are four to five times more likely to die from pregnancy complications than white women. Lastly, married Black women are nearly twice as likely to experience infertility as married white women, but they are treated half as often, and are less likely to achieve pregnancy after in vitro fertilization (IVF), while suffering more severe complications and side effects (like ovarian hyperstimulation syndrome).
In 1850, the reported Black infant-mortality rate was 340 per 1,000; the white rate was 217 per 1,000. Today, in America Black infants are now more than twice as likely to die as white infants. This difference transcends class. A Black woman with an advanced degree is more likely to lose her baby than a white woman with less than an eighth-grade education . In this article we will shed some light on lesser known issues that, to this day, may cause trust issues between the medical community and the Black community. There are many well-known examples of unimaginable trust or consent breaches, such as; the Tuskegee experiments, the story of Henrietta Lacks and HeLa cells, and the Buck vs. Bell decision and sterilization laws that targeted the poor and minorities to name just a few. Those events have been well covered and are beyond the scope of this article to discuss in a way that gives due justice to them.
These disparities (Black infant and maternal mortality, and lack of sexual health and fertility treatments) can start to be unravelled through an historical perspective of the history of gynecological and obstetrical violence and through examination of modern-day implicit biases that are deeply-rooted in society as a result of systemic racism.
The Roots of Structural and Systemic Medical Racism
Scientific racism, sometimes termed biological racism, is the pseudoscientific belief that empirical evidence exists to support or justify racism (racial discrimination), racial inferiority, or racial superiority. We can begin to unravel today’s racial disparity in healthcare by understanding the historical roots of inequity.
In 1851, Dr. Samuel Cartwright published a paper entitled, “Report On The Diseases and Physical Peculiarities Of The Negro race” in The New Orleans Medical and Surgical Journal, a reputable scholarly publication.
The paper’s main thesis was the existence of “drapetomania”, a disease that caused slaves to attempt to flee captivity. If a slave appeared “sulky and dissatisfied without cause” it was a warning sign of imminent flight. His prescription (let the horror of that sink in…) to stop the disease from fully taking over the slave was, as he writes in his own words, “whipping the devil out of them” as a “preventative measure.” As a remedy for this “disease,” Cartwright made running physically impossible by “prescribing” the removal of both big toes.
He invented a mental illness called “dysaesthesia aethiopica”, which allegedly made Blacks lazy in their work. The treatment of which was “to have the patient well washed with warm water and soap; then, to anoint it all over in oil, and to slap the oil in with a broad leather strap; then to put the patient to some hard kind of work in the sunshine.”
During this same time, a physician named J. Marion Sims developed the surgery to treat fistula, (a hole between the bladder and vagina, or rectum and vagina, that can open as a result of protracted and complicated labor), by performing multiple experimental surgeries on partially clothed, un-anesthetized, and enslaved Black teenage girls.
In his autobiography Sims wrote, “I got three or four more to experiment on, and there was never a time that I could not, at any day, have had a subject for operation. But my operations all failed … this went on, not for one year, but for two and three, and even four years.”
Unlike the careful record keeping (names, ages, identities, etc) of Nazi medical experiment victims during the Holocaust Sims’ victims went unnamed, except for three; Anarcha (14–17 years of age), Betsey (age unknown), and Lucy (18 years of age).
Sims became known as the “Father of Gynecology” for his role in developing treatments and devices for gynecology. Today, J. Marion Sims’ actions run egregiously afoul of informed consent in medicine. We consider his actions to be assault and battery. Sims operated on these women without anesthesia partly due to lack of his own training, but because of the cost of providing anesthesia and the commonly held notion (then, as now by the way) that Black women could bear the pain. The surgeries were so gruesome that assisting physicians began refusing to help Sims- i.e. holding the patients down during the surgeries or hearing their cries as they endured repeated operations with no pain management.
Image Credit: Illustration of Dr. J. Marion Sims with Anarcha by Robert Thom. Courtesy of Southern Illinois University School of Medicine, Pearson Museum.
Cartwright’s edifice of scientific racism and Sims’ horrific legacy of treating fistula on slave children (yes, let’s call them children, they were TEENAGERS) with no anesthesia survives to this day.
The Horrifying Legacy of Obstetric and Gynecological Violence
Black women are four to five times more likely to suffer pregnancy related mortality than white women. This statistic is only partially generated from Blacks having a higher risk of pregnancy complications. The Centers for Disease Control and Prevention (CDC) stated that from 2007–2016, cardiomyopathy, thrombotic pulmonary embolism and hypertensive disorders of pregnancy contributed more towards pregnancy-related mortalities in Black women than in white women. However, carefully conducted studies have shown that Black infant and maternal mortality cannot be fully explained by pre-existing medical conditions, OR by income, weight, maternal vitamins, smoking, drinking, or drug use, or anything else- except that is for stress. The chronic, long term, toxic, unmanageable stress of being Black in America, the very inescapable atmosphere of societal and systemic racism that is cultivated here, leads directly to higher rates of infant and maternal death.
In modern times, women in general, but Black women specifically are routinely under-treated for pain. A 2001 study published in the Journal of Law, Medicine & Ethics found that many doctors (incorrectly) believe that women have a “natural capacity to endure pain” and possess more coping mechanisms for pain than men, presumably due to having to endure childbirth. In 2016, a study by researchers at the University of Virginia researchers found Blacks receive inadequate treatment for pain, but also inadequate treatment relative to World Health Organization guidelines. Inaccurate and racially biased pain management means that whites are more likely than Blacks to be prescribed strong pain medications for the exact same complaints. Black and Hispanic women are less likely than white women to receive epidural analgesia for labor and Black patients with private insurance have the same rate of epidural analgesia as white patients without any insurance at all . Black women report being repeatedly and roughly questioned for potential drug seeking or drug abuse behavior, while simultaneously being ignored and demeaned as “under” or “over” acting in a maddening “damned if you do, damned if you don’t” chess match to have their pain and symptoms validated and treated.
For example, Black women who present with symptoms of endometriosis are often misdiagnosed with pelvic inflammatory disease (PID) — a condition that is sexually transmitted. A doctor can only make an accurate diagnosis of PID through laparoscopic surgery — a procedure that insurance companies consider elective. The decision to move forward with this surgery lies solely with the doctor’s validation of the patient’s complaints of pain. Research on endometriosis in Black women and other women of color is very limited, which further enables racial and gender based stereotypes to dictate medical diagnoses and decisions. Endometriosis can be debilitating; painful periods, bleeding and pain during ovulation, uncomfortable intercourse, heavy bleeding, and chronic pelvic pain. Its impact on quality of life can be devastating. Not only that but it can lead to infertility, when left untreated, as the symptoms multiply and grow for an average delay of 4–11 years to diagnosis, making infertility harder and harder to treat.
Lastly, we come to the under-treatment of Black infertility. One might assume that fewer Black women receiving treatment for infertility implies there are simply fewer Black women with infertility.
But, this is a hasty conclusion.
It is definitely not that simple.
There are various explanations provided for the mistreatment of infertile people of color (POC). There are often misperceptions of POC being hyper-fertile or being unfit to be mothers . The trope of the “welfare queen” comes to mind as a strong visual, perpetrated by the media. A plump, lobster-eating, Cadillac driving, well dressed, Black or brown hyper-fertile woman, who has child after child to maintain the government handout.
Image Credit: Steve Brodner
Not only do historical racial inequities in medicine lead to inaccurate diagnoses, but there is also societal pressures and shame that result in a Black woman remaining silent about infertility struggles.
It is not simply the societal views on Black infertility that are problematic, it’s the greater need for investment in research and resources and the need to focus on racial disparity in assisted reproduction technology (ART) outcomes. There is a marked, and unacceptable, difference in the outcomes after fertility treatment between populations:
The ART failure rate (no live birth after treatment) is 51.9% (white), 61.8% (Asian), 62.2% (Black) and 55.9% (Hispanic).
ART stillbirths are 16.3% (white), 18.4 (Asian), 25.0% (Black) and 17.8 (Hispanic)
Tubal factor infertility diagnoses are 18.5% white women, 41.7% (non-Hispanic) Black women, 27.3% Hispanic women, and 17.0% Asian or Pacific Islander women.
The reasons these disparities exist include genetics, income, health insurance and maternal stress. However, there is a lack of outreach regarding accessible educational, counseling, and support resources to minority communities. Resources and education are what enable people to direct their sexual health and infertility care. Racial inequality and social stigma strip people of the power to do so. Historical stereotypes continue to stubbornly prevail and prohibit Black women from receiving the infertility healthcare and resources they require.
A study conducted by Ann V. Bell sheds some light on the subtle inequalities that play a role in treating infertility. Bell interviewed 27 women of low socioeconomic status. 10 participants were Black, 2 were Latina and 1 was Asian. The findings of her research were disturbing and demonstrate how ethnic communities do not have pleasant, welcoming, and helpful doctor visits. For example, one 33 year old Black woman interviewed by Bell recounted her experience after suffering a miscarriage:
“They — they just — they just seem like they just didn’t want me to have any kids (laughs) at all. At all. And that was sad. They, you know, they scared me into even trying to have any more. They tried — they tried to get me not to even have any more […] They was really scaring me. That’s why I — I said, ‘Oh (laughs). Never again, Holy Grace Hospital. Never again’. Because they scared me and it was just — just crazy.”
We interviewed the founder of the Fibroid Pandemic, LaToya Dwight, BBA,MSM,RHU, ChCC, REBC. The Fibroid Pandemic is a support group for women with fibroids (especially for POC, who get little support). When Ms. Dwigh’s white doctor diagnosed her fibroids, they immediately prescribed a hysterectomy (removal of the uterus). Obviously, that is a huge, life changing decision, yet, despite the gravity of it, the treatment plan was handed down cavalierly with no mutual discussion or consent, and no discussion of alternate, fertility preserving options. She changed physicians (to a Black doctor) and discovered that there are other, less-severe options; diet and lifestyle changes and embolization, among others.
Not even fame and wealth can prevent Black women from experiencing these inequalities. Celebrities like Gabrielle Union and Serena Williams have publicly shared their infertility and post-birth near death experiences. Gabrielle Union struggled with heavy periods, pain, and infertility for years, before one doctor took her symptoms seriously and finally, properly diagnosed her adenomyosis. Prior to that, every doctor simply dismissed her concerns and put her on birth control pills. After giving birth, Serena Williams suffered a life-threatening blood clot in her lungs after giving birth to her son. Unfortunately, at first the medical staff did not believe her, but eventually a CT scan proved her right–she had a pulmonary embolism and several small blood clots had traveled to her lungs.
The above mentioned inequalities are appalling alone, however, the picture gets bleaker still for Black newborns. Black newborns are more likely to survive in hospital if taken care by Black doctors. This was unequivocally demonstrated by an analysis of 1.8 million hospital births in Florida between 1992–2015. In 2017 the CDC data also backs up the fact that Black newborns have twice the rate of infant mortality compared to white non-Hispanics. Neonatal mortality rate is the highest among Black non-Hispanic newborns. Black newborn lives matter. Black infertility matters. Black mamas matter.
Regardless of whether it is conscious or unconscious racism, the stories presented here establish that reproductive healthcare settings are deadly environments for the Black community. If there was not even one racist doctor or healthcare practitioner, systemic racism would still exist. The reproductive healthcare system must be re-structured to reduce structural inequalities in diagnosis and treatment of infertility, and to eradicate systemic, and deadly racism.
About the Author
Dr. Carol Lynn Curchoe, TS (ABB) is a reproductive physiologist. She is the founder of ART Compass, (artcompass.io) a mobile application platform for IVF cycle management, a Fertility Guidance Technology (www.fertilityguidancetechnologies.com). She is the author of The Thin Pink Line (2021), Nova Science publishers.
The Thin Pink Line is a critical examination of health disparities in various aspects of reproduction. We will explore historical perspectives and controversial topics in modern gynecology from birth control to sterilization, to episiotomies and the “husband stitch,” to “educational” pelvic exams, shackling laboring convicts, gender affirming surgery, human embryo research, assisted reproduction and more. This article was written with assistance from Pooja Kasarapu, ART Compass content manager.
This work was originally published in Lips.
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