At age 23, Regina Townsend was doing everything right: She’d graduated from college, gotten married and now it was time for her to have a baby, Townsend, now 41, recalled to TODAY.
At the time, she thought it’d be easy to get pregnant. In fact, she thought it was hard not to get pregnant by the way her family drilled it into her growing up.
“‘Whatever you do, don’t get pregnant. You need to go to college. You need to do well,'” family members would tell her as a teenager, she said. “But there was never a conversation about (fertility).”
That’s why Townsend was so surprised to learn she wasn’t able to conceive without fertility treatments.
“At 30-something, I’m thinking everything’s going to be fine. And I’m hearing, ‘Oh, you have fibroids. You have (endometriosis). Your egg quality isn’t great.’ It’s like, wait a minute. I didn’t know that I was even supposed to be concerned with all of this,” she told TODAY.
It took 10 years for her to be diagnosed with endometriosis, polycystic ovarian syndrome (PCOS), and completely blocked fallopian tubes, Townsend said. When she learned of the blockage, she and her husband decided to start in-vitro fertilization (IVF) treatments. They conceived son Judah, who is now 6.
Research shows that it’s common for Black women to start fertility treatment after experiencing infertility for multiple years, whereas their white counterparts usually seek care sooner — and Black women are often in their late 30s or early 40s when they start, older on average than white women. Michelle Obama started IVF when she was 37, and Tyra Banks, Kandi Burruss, Angela Bassett and Gabrielle Union started treatments when they were in their 40s.
The delay in care may contribute to higher rates of death in Black newborns conceived with fertility treatment versus white newborns, NBC News reported last month. An October 2022 study in the journal Pediatrics found the neonatal mortality rate in Black moms using fertility treatments was four times higher than in white moms. (When fertility treatments aren’t used, the neonatal mortality rate in Black moms is two times higher than in white moms.)
“It’s not an error on behalf of the patient … (or) that they just show up late,” Dr. Tia Jackson-Bey, an infertility specialist and OB-GYN at Reproductive Medicine Associates of New York, told TODAY. “There may be other barriers that have prevented them from seeking care in a timely fashion.”
More infertility, less treatment
Black women are most likely to start their first round of fertility treatment at 41 or older, whereas white women are most likely to start before 35, according to a 2020 study published in Reproductive Biology and Endocrinology. Before their first appointment, the duration of infertility Black women experience is up to two years longer than when white women first seek care, according to a 2007 study published in Fertility and Sterility. Black women are also twice as likely as white women to have fertility challenges, according to a 2008 study in Fertility and Sterility.
Dr. David Seifer, a reproductive endocrinologist at Yale Medicine and lead author of the 2020 and 2007 studies, said “there’s no simple answer” to explain the delay. He suggested that insurance coverage, awareness of the “biological clock” and partners’ attitudes toward fertility treatment may all play a role.
‘Something that rich people do’
Jackson-Bey said the disparities are primarily due to insurance coverage and who has the means to pay for treatments. About 12% of Black Americans do not have health insurance, compared to 9% of white Americans, according to 2022 report from the Department of Health and Human Services. IVF treatments costs between $40,000 and $62,000, according to the clinic CCRM Fertility.
“Infertility, diagnostic evaluation and treatment are one of the few areas of medicine that is not universally covered by insurance,” Jackson-Bey explained. “That creates a really large gap in terms of who is able to access care and who is not.”
Townsend, a librarian in Chicago, said money was a factor for her.
“I had heard about IVF from the beginning, but I was afraid of it,” she said. “First of all, the way that IVF is marketed traditionally is that it’s something that rich people do. It’s something that white people do. … It’s not something that you think, first of all, that you’re going to need. And second of all, you don’t think you’re going to be able to afford it, even if you do need it.”
Once getting past the money, “there’s the shots and the medication and all that other stuff,” Townsend recalled. “I just really felt overwhelmed by the idea of it. And I really wanted to try anything that we could do naturally, before getting to that point, because I just was like, I don’t know how I’ll be able to afford it.”
The only reason she was able to cover the cost, she said, is that she lives in Illinois, one of few states that requires insurance companies to cover fertility treatments. She also received a grant from the Cade Foundation to cover additional costs. Townsend has since started her own advocacy organization, The Broken Brown Egg, which provides grants to people in similar situations.
‘The myth assigned to us’
National data identifying racial disparities in fertility care only recently became available when Seifer published his 2007 study. Previously, there were only smaller population studies that were “somewhat controversial,” he said.
“One study would say there is a difference. Another study would say there wasn’t, depending on what patient population they were looking at,” Seifer explained. “To resolve that, we used this national database, and it was clear that there was a difference. Up until that point, I don’t think that practitioners were really aware of it.”
“I remember when I first looked at the data how surprised I was at what I was finding,” he added.
Doctors’ lack of knowledge about racial disparities in fertility treatment doesn’t surprise Townsend. She said she and members of The Brown Broken Egg have experienced misdiagnoses and subpar care from practitioners, leading them to believe harmful biases toward fertility care remain prevalent in the medical community.
There are “the stereotypes and historical context of African Americans in this country as breeders,” Townsend said. “(Doctors) think only white women need (fertility treatment).”
“We didn’t create that. That was a myth assigned to us. And without the context, people don’t think we need the treatment,” she added. “We have to bring those things to light.”
Townsend said she thinks unconscious bias played a role in her delayed diagnoses of PCOS, blocked fallopian tubes and endometriosis during the early 2000s.
“When I first knew there was an issue with my period, I was (waiting) for hours to be seen, and then when I was seen, it was, ‘Well, here’s some birth control pills. That’ll stop it.’ Nobody was actually looking at the actual issue.”
Jackson-Bey said experiences like Townsend’s, as well as the history of medical racism in the U.S., contribute to a general mistrust in the health care system among Black women and can result in them delaying fertility care.
“The role of unconscious bias and different, difficult historic interactions with the medical system can also, unfortunately, affect the care that they receive — whether or not the care is received but also the quality of the care,” she said.
‘Less likely to speak’ about it
Seifer said infertility and fertility treatment is still stigmatized, particularly among the Black community, “so they tend to delay, they may have a hard time finding a doctor, they may be less likely to speak to their friends about it. It’s a whole belief system and … their priorities could be intergenerational or not. … There’s so many questions about it that needs to really be pursued.”
He said health care providers knowing the gap exists and Black women knowing the stage of their biological clock are the first steps in evening the disparity.
“A lot of critics say, ‘You’re going to get a lot of people anxious (that) they have to get pregnant sooner than later,'” he said. “But let them decide. If you’re not aware of it, then you don’t really get to make a decision.”
Jackson-Bey said another step toward decreasing the gap is for states to follow New York and 18 other states in mandating that insurance companies pay for fertility treatments.
“The sooner more and more states can either have this access, or it’d be very nice to have a federal mandate for this access, the sooner we can at least start to close some of those economic gaps,” Jackson-Bey said.
She also called for more research: “What the data has shown is that they may have been experiencing infertility for a longer period of time than other women and (we don’t know) why that is. Is it because it took longer for them to be referred? Is it because they didn’t realize sooner that there was an issue? Or are there barriers in insurance coverage or perception? What happens when they go to certain clinics, or feeling welcome enough to present to certain clinics?”
Townsend said she thinks of her tumultuous fertility journey “every single day, every single time” she looks at her son.
“It is the typical happy ending, but it comes with its own level of stress and drama, too, because you never fully get over fertility issues. I tend to think of it as you get PTSD from infertility. I look at him now, and I still sometimes have to wonder, is he real? Did this really happen?”
Despite her trauma, she said it’s critical for people to discuss what’s happening to their bodies: “We stopped talking about those things. We don’t share when there’s something going on. That’s dangerous.”
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