At 23, Regina Townsend was doing everything right: she had graduated from college, got married and now it was time for her to have a baby, Townsend, now 41, recalled to TODAY.
At the time, she thought it would be easy to get pregnant. In fact, she thought it was hard not to get pregnant by the way her family forced her to grow up.
“’Whatever you do, don’t get pregnant. You have to go to college. You have to do well,’” family members told her as a teenager, she said. “But there was never a conversation about (fertility).”
That’s why Townsend was so surprised to learn that she couldn’t conceive without fertility treatments.
“At 30, I think you’ll be fine. And I hear, ‘Oh, you have fibroids. You have (endometriosis). Your egg quality isn’t great. It’s like, wait one minute. I didn’t even know I was supposed to be concerned with all of this,” she said.
It took 10 years for her to be diagnosed with endometriosis, polycystic ovary syndrome (PCOS) and completely blocked fallopian tubes, Townsend said. She and her husband then decided to start in vitro fertilization (IVF) treatments. They conceived a son, Judah, who is now 6 years old.
Research shows that it’s common for black women to start fertility treatment after being infertile for several years, while their white counterparts typically 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 treatment when she was 40.
The delay in care may contribute to higher death rates among black newborns conceived with fertility treatment compared to white newborns, NBC News reported last month. An October 2022 study in the journal Pediatrics found that the neonatal mortality rate among black mothers using fertility treatments was four times higher than among white mothers. (When fertility treatments are not used, the neonatal death rate among black mothers is twice as high as among white mothers.)
“It’s not an error on the part of the patient…(or) that he just showed up late,” Dr. Tia Jackson-Bey, infertility specialist and OB-GYN at Reproductive, said today. Medicine Associates of New York. “There may be other barriers that have prevented them from seeking timely care.”
More infertility, less treatment
Black women are more likely to start their first cycle of fertility treatment at age 41 or older, while white women are more likely to start before age 35, according to a 2020 study published in Reproductive Biology and Endocrinology. Before their first appointment, black women’s duration of infertility is up to two years longer than when white women first visit, according to a 2007 study published in Fertility and Sterility. Black women are also twice as likely as white women to have fertility problems, 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 is no simple answer” to explain the delay. He suggested that insurance coverage, awareness of the “biological clock” and partners’ attitudes towards fertility treatment may all play a role.
“Something the rich do”
Jackson-Bey said the disparities are primarily due to insurance coverage and who can afford to pay for treatments. About 12% of black Americans do not have health insurance, compared to 9% of white Americans, according to the 2022 report from the Department of Health and Human Services. IVF treatments cost between $40,000 and $62,000, according to the CCRM Fertility Clinic.
“Infertility diagnostic evaluation and treatment is one of the few areas of medicine that is not universally covered by insurance,” Jackson-Bey explained. “It creates a very big gap in terms of who can access care and who doesn’t.”
Townsend, a librarian in Chicago, said money was a factor for her.
“I had heard about IVF all along, but I was afraid of it,” she said. “First of all, the way IVF is traditionally marketed is that it’s something rich people do. It’s something white people do. … It’s not something you first think you’re going to need. And second, you think you can’t afford it, even if you need it.
The only reason she was able to cover the cost, she said, is because she lives in Illinois, one of the 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 his own advocacy organization, The Broken Brown Egg, which offers 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-based studies that were “somewhat controversial,” said he declared.
“A study would say there is a difference. Another study would say there was none, based on the patient population they were looking at,” Seifer explained. “To solve this problem, we used this national database, and it was clear that there was a difference. Until then, I don’t think practitioners were really aware of it.
“I remember when I first looked at the data how surprised I was at what I found,” he added.
Doctors’ lack of knowledge about racial disparities in fertility treatment doesn’t surprise Townsend.
There are “the stereotypes and historical background of African Americans in this country as ranchers. (Doctors) think only white women need (fertility treatments),” she said of her experience.
“We didn’t create that. It was a myth assigned to us. And without the context, people think we don’t need treatment,” she added.
‘Less likely to talk about it’
Seifer said infertility and fertility treatment is always stigmatized, especially within the black community, “so they tend to delay, they may have trouble finding a doctor, they may be less likely to tell their friends about it… There are so many questions about this that really need to be explored.
He said health care providers knowing the gap exists and black women knowing the stage of their biological clocks are the first steps to closing the disparity.
“A lot of critics say, ‘You’re going to worry a lot of people (that they) have to get pregnant sooner rather than later,'” he said. “But let them decide. If you are not aware of this, you cannot really make a decision.
Jackson-Bey said another step toward closing the gap is to establish a federal mandate that requires insurance companies to cover fertility treatments, and states should follow the lead of New York and 18 other states that already require it.
Townsend said she thinks about her tumultuous fertility journey “every day, every time” she looks at her son.
“It’s the typical happy ending, but it also comes with its own level of stress and drama, as you never completely get over fertility issues. I tend to think about it when you have PTSD. due to infertility. I watch it now, and sometimes I still have to wonder, is it real? Did it really happen?”
Despite her trauma, she said it was essential for people to discuss what is happening to their bodies: “We stopped talking about these things. We don’t share when something is happening. It’s dangerous.”