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Stephenie Black-Grant loves her general practitioner, a woman who she says “can read me like a book.” Yet, when her menstrual cycles changed a few years ago, she was reluctant to follow that same doctor’s advice to be screened for cancer. “I didn’t want to deal with my reproductive health because I had had a few bad encounters with gynecologists. Both were Black men. And so, I just didn’t want to deal with it. I literally quit getting my gynecological exams,” she says.
Black-Grant ascribes her primary care doctor’s persistence, in part, to their shared race. “My doctor was doing all she could,” she says. “I don’t think I would get that kind of personal [attention] from another physician. I think anybody else would’ve just moved on.” When she needed an oncologist, she couldn’t find a Black provider who took her insurance in the early, overwhelming days after her diagnosis.
“Your likelihood of having a positive, respectful, patient, culturally congruent interaction is not high. And we see that across the board for Black women describing their experiences of seeking reproductive, gynecologic health,” says Kemi Doll, who is a gynecologic oncologist but is not Black-Grant’s doctor. Doll founded the Endometrial Cancer Action Network for African Americans, where Black-Grant has participated in virtual yoga classes and support groups since her diagnosis of uterine cancer in 2019.
“My oncologist, me and her are about the same age, and she’s sharp,” Black-Grant says. “She’s from the midwest, I’m from the Midwest—we connect on that level. But there are certain things I’ll say, and she’ll be like, ‘Excuse me?!’ And I’ll have to translate for her what it is I’m saying.” In rushed appointments, Black-Grant says she has to be extra assertive to be heard, and those explanations can eat up precious time. “When I’m concerned or irritated, I don’t know that she picks up on the cues, like, ‘Oh, she’s having a moment.’”
Doll’s research also found a 90 percent higher mortality rate from endometrial cancer in Black women compared to their white counterparts.
Such missed cues are a tiny piece of the decades-old disparities among maternal mortality and reproductive cancer survival rates. According to the U.S. Centers for Disease Control and Prevention, Black women in the United States die during pregnancy at a rate of 34 deaths per 100,000 births, compared to 17 deaths per 100,000 births in the general population. In 2017, a study found that 10.1 of 100,000 Black women with cervical cancer would die from the disease per year, as opposed to 4.7 per 100,000 in white women. Doll’s research also found a 90 percent higher mortality rate from endometrial cancer in Black women compared to their white counterparts. The disparities are hardly limited to reproductive health. Among people with COVID-19, Black women died at three times the rate of white or Asian men, a Harvard study found. Today, Black ob-gyn leaders are among those hoping to move beyond identifying systemic racism as the cause of these disparities to improving the lives and lifespans of Black people.
Cynthia Gyamfi-Bannerman is one of them. A perinatologist who researches high-risk pregnancies, she contributed to research on the impact of COVID-19 last March and April as patients poured into New York City hospitals. She and her colleagues demonstrated that healthy babies could safely nurse and bond with COVID-19-positive moms without themselves becoming infected. Recently, she was named chair of the University of California, San Diego’s department of obstetrics, gynecology, and reproductive sciences—and she listed diversity and equity among her top priorities for patient care.
“I’m noticing that Black women are now picking out Black doctors [more often] than they were in the past for sure,” she says.
“There are very few of you”
For Black physicians, there is pressure, too, says Dineo Khabele, chair of the ob-gyn department at Washington University in St. Louis. “If you’re a Black physician, there are very few of you,” she says. “I think that sometimes there’s a sense of responsibility and a sense of wanting to do more. And so there’s a lot of stress that’s associated with wanting to be an advocate, but sometimes you can’t because you’re trying to survive, yourself, in a very difficult situation.” During the birth of her son, now 22, she says her husband called in her own gynecologist, who was also Black, when her pain was mocked by medical providers.
Today, Khabele is building on a decade of research in ovarian cancer and is now enrolling patients into early clinical trials using a new class of drugs that alter gene expression in chemotherapy-resistant tumors. If they work, these new drugs will make the cancer cells more sensitive to standard chemotherapy, and Khabele considers this research the most important work of her career thus far.
Though her work could benefit all people with cancer, it may particularly impact Black women, whose diagnoses are often delayed or missed, “People presume that they have fibroids or a mass that’s not ovarian cancer,” Khabele says. “They’re less likely to undergo standard-of-care, aggressive therapy, less likely to be enrolled in clinical trials. And so, adding all these things together, Black women diagnosed with advanced stage ovarian cancer, which is the most common presentation of this disease, are more likely to die from it.”
Diagnosing in error
These disparities are also true for endometrial cancer. Yet gynecologic oncologist Kemi Doll says that lower-than-average survival rates from endometrial cancer in Black people are blamed on obesity. “We actually have data that this narrative is not accurate,” Doll says. Her research has shown the error of linking obesity to rising endometrial cancer rates without accounting for the declining rate of hysterectomies, a procedure to remove the uterus that makes subsequent endometrial cancers (in the lining of the uterus) impossible. In the past, higher hysterectomy rates led to fewer cancer diagnoses. Now that more women have their uterus, cancer of the uterine lining is more common. In addition, the type of endometrial cancer on the rise is a type not linked to obesity.
Doll now runs a coaching business for women of color in academic medicine, hoping to be the type of mentor she lacked. “I was told on more than one occasion, ‘You should really expand to more cancers,’” she says of her early research interest. She stayed focused.
Doll’s research has also uncovered how structural racism drives late-stage endometrial cancer diagnoses in Black women. Poor early experiences in medical environments, where physicians take Black womens’ reports of vaginal bleeding less seriously, lead to an absence of postmenopausal Black women in gynecology clinics. In addition, Doll’s research has demonstrated that transvaginal ultrasounds as a standard diagnostic measure are not effective in identifying endometrial cancer in Black women, who are more likely to have fibroids that can obscure test results, as well as to develop a less common type of endometrial cancer that is harder to detect via transvaginal ultrasounds. Together, these factors contribute to a 90 percent higher five-year mortality rate for Black women than white women.
Fighting cancer in low-income countries
Another researcher eyeing earlier diagnoses as a way of tackling gynecologic cancer mortality rates is Chemtai Mungo, a gynecologist and global health research fellow whose work focuses on diagnosing and treating cervical cancer in people with HIV and in lower-income settings. Pap smears and diagnostic biopsies have drastically lowered cervical cancer rates in higher-income nations like the United States, Mungo says. But they tend to rely on resources not readily available across the globe. “Similar to challenges with the COVID-19 vaccines, for example, low-income countries have not had ready access to HPV vaccines, largely due to cost issues,” Mungo says.
For Black women in the U.S., their incidence of cervical cancer is unacceptably high compared to non-Black women.
Mungo’s recent work in Kenya sought alternatives, allowing nurses in clinics without electricity to use cell phones to take photos of a patient’s cervix after applying a special solution that highlights abnormal cells. The nurse then sends the photo to a specialist, who helps guide treatment decisions. Rather than invasive biopsies, Mungo is excited about the possibility of handheld, portable, battery-powered devices to perform a thermal ablation, a procedure designed to destroy abnormal cervical cells. Artificial intelligence diagnostics that recognize patterns in images of abnormal cells are another area of promise, Mungo says, allowing women to potentially be diagnosed and treated on the same day.
While Mungo’s work is targeted to low-income areas in sub-Saharan Africa, Latin America, or Southeast Asia, her goal is to enable people to access such technologies regardless of geography. “This idea of same-day treatment, for example, is very highly applicable to lower-income settings within the U.S.” she says.
Even in advanced economies like the United States, where Mungo currently practices, there’s still a lot of inequity along ethnic lines. “For Black women in the U.S., their incidence of cervical cancer is unacceptably high compared to non-Black women and it’s because of this inequity,” she says.
Meanwhile, Khabele says, there’s been an explosion in interest in Black physicians, but not enough providers to meet the demand. Department heads like her and Gyamfi-Bannerman are focused not only on research to improve outcomes and lifespans, but finding ways to address subtle, yet pervasive racism. “I think it’s more the assumption of what the person in front of you thinks, perceives, feels, without even getting into the person to see what they might be like,” Gyamfi-Bannerman says, “they’re just kind of assumptions that go with the care.”
“That, I think, is where people really struggle,” she says. “And then, people feel like they’re not listened to, and that, I think, is a huge problem.”
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