Infertility and Diversity: Why The TTC Conversation Should Be More Inclusive

kelsey butler infertility conversation ttc inclusivity

Say the word “infertility” and you’ll likely think of a specific type of patient. Affluent, college-educated, and white might be the first characteristics that come to mind.

Unfortunately, that image doesn’t include many whom are struggling with fertility issues but come from other communities, and dealing with the lack of awareness and services makes the infertility journey even more difficult for them.

“Infertility impacts people regardless of race, ethnicity, geographic location, or the size of their bank account,” says Sasha Ottey, executive director at PCOS Challenge: The National Polycystic Ovary Syndrome Association.

And yet, that initial picture persists. “As with most health conditions, depending on the combination of the aforementioned traits, some people will have a tougher time accessing resources and care to improve the odds of building their families,” Ottey says.

That piece of the equation—the lack of access to resources—may be part of the reason that initial image exists, says Elena Trukhacheva, M.D., M.S.C.I., president and medical director at the Reproductive Medicine Institute.

It’s a bit of a vicious cycle. “Fertility treatments are quite expensive and so more people from higher socioeconomic backgrounds pursue them,” she says, which perpetuates the perception that only certain types of people need to or can pursue them.

Higher Rates, Fewer Resolutions

Not only does infertility affect people broadly across communities, there are several issues for those in minority groups: Higher incidences of fertility-related issues overall, women in these groups don’t pursue treatments, and those that do don’t see as much success as white women.

A 2016 study from the American Journal of Obstetrics & Gynecology shows that although the numbers aren’t vastly different, infertility rates among black and Hispanic women—at 7.2% and 6.1%, respectively, were higher than those for white women, at 5.5%. (Even within the white community, certain populations have more issues than others. Research has shown that some genetic conditions that affect fertility like Tay Sachs disease and Canavan disease, occur more frequently in those of Ashkenazi Jewish ancestry.)

Despite these higher figures, the American Journal of Obstetrics & Gynecology research showed that non-white women were typically “less likely” to use IVF. Separate research published in Fertility and Sterility said that a survey showed that during 2006 to 2010, more non-Hispanic white women (15%) pursued medical help to get pregnant than Hispanic (7.6%) or non-Hispanic black (8.0%) women.

Infertility impacts people regardless of race, ethnicity, geographic location, or the size of their bank account.

Even when minority women do seek outside help, many end up having less success with their fertility treatments. According to the American Journal of Obstetrics & Gynecology, studies have shown that blacks, Asians, and Hispanics had lower clinical pregnancy rates (32.2%, 31.2% and 37.5%, respectively) than white women (40.5%). Research presented recently at the American Society for Reproductive Medicine’s (ASRM) Scientific Congress indicated that outcomes of IVF procedures for African-American women were not as successful as for other races—highlighting the need for more research on this topic.

Minority women might already face higher instances of certain general health conditions, which might prevent them from even trying to pursue an infertility resolution, because it might add yet another layer of complication to their health care efforts.

“Women of color have the challenges of managing any chronic or acute illness because of issues with access to care, and many healthcare providers’ inclination to believe them less than they do other people,” Ottey says. “Therefore, women of color sometimes struggle harder to get answers, health advice, or treatments.”

Cultural Pressures

Certain expectations within a culture can lead to a major weight on some wannabe parents’ shoulders. Depending on a person’s ethnic background, there can be a “traumatizing burden placed on women to ‘be fruitful and multiply,’” Ottey adds.

“Women often have unnatural pressure from their families, friends, healthcare providers, places of worship, and others.” she says. “The emotional burden of infertility along with the uncertainty of the quality of healthcare around sustaining a pregnancy and a healthy delivery, are additional pressures and challenges that many women of color—particularly black women—face.”

Representation matters. Those who don’t see themselves in the stories and statistics, or on the brochures and imagery for clinics and agencies, can get the false idea that they aren’t included. That becomes devastating when they begin to find that they have fertility issues.

Damaging racial stereotypes may make infertility particularly isolating for some women, too, says Regina Townsend, founder of The Broken Brown Egg.

“There are still stereotypes that paint women of color as hyper-sexual, hyper-fertile, having more kids than they know what to do with, having babies before they’re done with high school, [and so on],” Townsend says. “Representation matters. Those who don’t see themselves in the stories and statistics, or on the brochures and imagery for clinics and agencies, can get the false idea that they aren’t included. That becomes devastating when they begin to find that they have fertility issues.”

Representation and Resources

Seeing celebrities of color like Michelle Obama, Gabrielle Union, and Tyra Banks make big headlines when publicly acknowledging their fertility challenges, is just one indicator that the “tide is turning” for women discussing their stories, says Shervonne Coney, founder of the online community Black Women and Infertility. “I don’t know of any other time in history that women who look like me talked about this subject, and openly in publicly,” she says.

And that discussion has also extended to women’s lives—particularly online. “I turned to social media as a place to lean on,” Coney says. “I couldn’t find a group…that I felt comfortable participating in, so I thought ‘I should create it,’ and that’s what I did.”

An ASRM Ethics Committee opinion article in Fertility and Sterility states: ‘Creation of a family is a basic human right. It is the responsibility of all assisted reproductive technology (ART) stakeholders, including physicians, policy makers, and insurance providers, to address and lessen existing barriers to infertility care.’

These social connections can really be a lifeline for those having a hard time. “I’d like to emphasize that there are so many specifically black women that want to feel heard and they want to feel understood,” Coney says, adding that sensitivity and understanding from those in their lives goes a long way.

In addition to PCOS Challenge, The Broken Brown Egg, and Black Women and Infertility, there are a number of organizations that women of color can lean on including: Fertility For Colored Girls, OSHUN Fertility, My Predestined One, Black Mamas Matter Alliance, and Sisters In Loss.

Change Needed In the Medical Community 

Though people of color and those from lower socioeconomic backgrounds have faced hurdles to getting optimal care in the past, it’s a priority for the medical community to improve the state of play, according to Amanda Adeleye, M.D., an OBGYN infertility specialist at University of California, San Francisco.

An ASRM Ethics Committee opinion article in Fertility and Sterility states: “Creation of a family is a basic human right. It is the responsibility of all assisted reproductive technology (ART) stakeholders, including physicians, policy makers, and insurance providers, to address and lessen existing barriers to infertility care.”

No one wants to feel like a minority inside of a minority, and that’s how you feel when you think you’re the only black woman dealing with infertility, or the only Latina, or the only Indian woman, or the only anything. Infertility is a painful and isolating experience, and nobody should have to face it alone.

One way to improve matters is by upping the level of information available to the public, says Adeleye, who is also on the team at Carrot, which aims to expand fertility insurance coverage for companies. “Part of the solution in my view is education, and truly it starts when you’re young,” she says. This can range from distributing information about STDs that can lead to fertility problems to sharing the fertility treatment options that do exist for patients.

Making sure that doctors are sensitive to potential community care differences will go a long way as well. “Quite frankly, as a medical community, we all need to be more aware of diversity when it comes to race and socioeconomic disparity. We have a lot of work to do,” she says.

Crucially, expanding access to medical care to folks of all stripes dealing with “involuntary childlessness” is of extreme importance. “I think one of the best things we can do to improve social justice (when it comes to this matter) is improve access to care,” Adeleye says.

The two most important things? That conversations about diversity get started and that those that want to grow their families get a fighting chance.

“It’s important to talk about diversity because life is diverse,” Townsend says. “No one wants to feel like a minority inside of a minority, and that’s how you feel when you think you’re the only black woman dealing with infertility, or the only Latina, or the only Indian woman, or the only anything. Infertility is a painful and isolating experience, and nobody should have to face it alone.”

Adeleye sums it up: “Everybody deserve to build the family of their dreams.”


Kelsey Butler
Contributor

Kelsey Butler

Kelsey Butler is a reporter and editor based in New Jersey. She has written for health and lifestyle publications including Women's Health and Brides. In her spare time, you can find her on the bocce court, collecting souvenir pennies, binging “Law & Order: SVU” episodes and hiking with her dog, Sonny.


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