For Black women, the isolation of infertility is compounded by barriers to treatment

Organized and efficient, L’Oreal Thompson Payton had a five-year-plan. Married at 27, she wanted to start having kids after she turned 30. Once ready, she downloaded an app to track her cycle, started prenatal vitamins, and picked out baby names. But the baby never came.

Like 12% of American women of reproductive age, Thompson Payton, now 32, has impaired fertility. Because infertility is something of a taboo topic in the Black community, and infertility services have long focused overwhelmingly on white women, Thompson Payton thought she was alone. She wasn’t.

Studies suggest that Black women may be twice as likely as white women to have fertility problems but are far less likely to seek or receive infertility treatment.

Many Black women facing infertility say they face an uphill battle in getting care. Challenges include not having insurance that covers the cost of infertility services, a lack of Black sperm and egg donors, prejudice from physicians, and feelings of shame and isolation. Those who do seek care can find themselves feeling deeply uncomfortable in a medical space that is overwhelmingly white.

“Literally, we are the only Black couple in the waiting room. You look at the photos of the babies on the wall and don’t see any melanin anywhere, not even a speck,” said Thompson Payton, a Chicago-area communications director who is currently navigating the pandemic to continue IVF treatments. “It takes this already isolating experience and makes it so much worse.”

The actual numbers of infertile Black women remain unclear because so few women of color have been included in infertility research and studies.

“African American women have been grossly underrepresented, so it’s really hard to quantify the rates. It could be twice as high for African American women, or even higher,” said Yetunde Ibrahim, a reproductive endocrinologist and assistant professor in the obstetrics and gynecology department at the University of Texas Health Science Center at San Antonio. After the killing of George Floyd brought renewed attention to systemic racism in the U.S., Ibrahim co-wrote an editorial in June encouraging those in her field to confront the impact of racism on infertility patients.

Even as they struggle with infertility at higher rates, Ibrahim said, data show Black women are half as likely as white women to seek or receive infertility care that might allow them to start families. “This is an injustice that has permeated our community for too long,” said Ibrahim. “We need to fix this.”

In a landmark 2015 study, “Silent and Infertile,” Rosario Ceballo, a University of Michigan psychologist and associate dean, interviewed 50 Black women about their experiences with infertility. “I was just floored that all the work on fertility was being done on white, very wealthy couples. When I learned women of color are more impacted, it seemed like a clear injustice,” Ceballo told STAT.

For Ceballo, Thompson Payton’s discomfort is achingly familiar. “I was struck by the absolute pain of women who described going to a medical appointment and seeing bulletin boards full of babies that were all white babies,” Ceballo said. “You think, does no one else see that? What about the physicians and the nurses who work there?” (Thompson Payton says she feels more comfortable now that she’s switched to a clinic where the physician is a woman of color who has undergone infertility treatment herself.)

About one-quarter of the Black women Ceballo interviewed reported that physicians made them uncomfortable by making assumptions about their sexual promiscuity, ability to pay, or their weight. Nearly all women reported feeling lonely, isolated, and like they had somehow failed. “The interviews were so painful,” Ceballo recalled.

While there has been more publicity about the issue recently, due in part to celebrities such as Michelle Obama and Chrissy Teigen being open about infertility struggles, Ceballo said the experiences of celebrities seeking and receiving infertility treatment probably don’t reflect the lives of most Black women. ”I’m both shocked and dismayed by how little has changed,” she said.

The trauma of those struggling with infertility is often compounded by the legacy of painful stereotypes about Black female sexuality, some of them reaching back to the centuries when enslaved women were expected to breed children for their owners. “There are these myths that Black women are supposed to be hyper-fertile, baby-making machines. Of course, I would find out differently,” said Rev. Stacey Edwards-Dunn, a minister at the Trinity United Church of Christ in Chicago who founded the support group Fertility for Colored Girls in 2013 after trying unsuccessfully to have a child for several years and finding no place to turn for support.

Edwards-Dunn said many Black women with infertility feel alone and carry a sense of shame that they have failed, are not complete, or are not strong women. Many can’t even discuss the topic of their infertility with friends or their mothers. “When you end up having a problem, you’re just dumbfounded based on what society has told you,” she said.

“In the African American community, this was not a conversation we had because it was taboo,” she said. “In the Black community, we don’t tell people our business. I had to learn about it on my own.”

And many churches can hurt rather than help those struggling with infertility by characterizing an inability to conceive as “God’s plan.” “We have to be careful how we use that language,” Edwards-Dunn said. “There are multiple paths in any plan.”

Edwards-Dunn said many Black women she counsels have been reluctant to turn to physicians for help because of a deep distrust of the medical establishment, especially in areas of reproductive health. The history of forced sterilization of women of color has gained renewed attention after disturbing new allegations that a U.S. Immigration and Customs Enforcement physician performed hysterectomies on detained women without proper consent.

“We don’t trust many doctors. Look at J. Marion Sims, they call him the father of gynecology and he practiced surgery on enslaved women without anesthesia. Look at the Tuskegee experiments,” said Edwards-Dunn. “A lot of doctors can use some customer service and cultural sensitivity training. We refer women to doctors and pharmacies that get it.”

One of those physicians is Michael Thomas, a reproductive endocrinologist who chairs the department of obstetrics and gynecology at the University of Cincinnati College of Medicine. In his three decades of practice, Thomas has seen far too many women of color seek infertility care much later than they should, when it can be harder to help them conceive.

There are many reasons for the delays, Thomas said. Some can’t afford treatments, some put it off because they’re busy. But many Black women simply don’t get referrals to specialists or are told erroneously by their gynecologists that Black women can’t be infertile.

“People, including physicians, tend to bring to the table their own biases,” Thomas said. “I know doctors today who prefer not to see couples of mixed race.”

Thomas heads an American Society for Reproductive Medicine task force seeking ways to increase access to infertility care for people of color. His group plans to present 15 recommendations at the society’s annual meeting later this month. Among them, lobbying for increased insurance coverage for infertility services and having clinics offer some free services to lower-income couples, enrolling more women of color in infertility studies, and diversifying the infertility workforce to include more physicians, nurses, and lab employees who are people of color.

Thomas says opening the pipeline for Black physicians like him has to start early. He regularly visits his former middle school south of Chicago with surgical simulators to spur interest in medical careers among the school’s mostly low-income students.

Thomas said his interactions with patients have been sometimes surprising. When he started, he felt some of his Black patients were suspicious that they weren’t getting “the good doctor” because they were seeing a Black physician. That’s not as much of an issue now. He often treats white couples, who might not necessarily have chosen or wanted a Black physician, but seek him out for help in getting pregnant because of his reputation. They often remain in close contact after having their children.

“These are guys from Kentucky, in overalls, and they come to our baby reunions year after year. They name their kids after me,” he said. “I even had one patient joke that he never thought his wife would get pregnant by a Black man.”

More seriously, Thomas said the barriers keeping Black women from using infertility services absolutely need to be broken down. “We need to give everyone a chance to have a child,” he said. More education is needed so women know that not all infertility treatment is prohibitively expensive, he said. “Not everyone needs IVF,” he said.

Unequal access to infertility services brings up deeper issues, said the psychologist Ceballo, about something scholars term stratified reproduction, in which medical technology is used to enhance the fertility of married, rich, white women, but not that of poor Black and brown women. “We have a system that’s set up to help certain women have children, but not others,” Ceballo said.

The cost to adopt a child sends a similar message: White babies cost the most, mixed race babies cost less, and Black babies cost the least, Ceballo said. “At its crux, what this means is that we value certain lives more than others.”

That’s something Edwards-Dunn, the Chicago minister, is trying to change, one baby at a time. Her support network, Fertility for Colored Girls, has exploded from a single Chicago locale to chapters in 13 states and counting. “I like to tell women, ‘You are not alone. You are valued. You are whole. And don’t give up,’” she said. “We’ve now had 200 babies born.”

One of those babies, Shiloh, belongs to Edwards-Dunn and her husband, Earl Dunn Sr. After seven years and seven IVF cycles, she gave birth to Shiloh in 2014. “Her name means the one sent by God,” Edwards-Dunn said. “And I truly believe that she was.”