December 29, 2020

Inequality in Infertility: Black, Indigenous and People of Color

five Black women walking down the street with their arms around each other

Inequality comes in many forms, but race-related disparities in fertility and maternal health, especially among Black women, are particularly resistant to change. Black, Indigenous, and People of Color (BIPOC) continue to have higher rates of infertility and lower rates of accessing fertility care than their white contemporaries—as well as a higher risk of maternal mortality. As a fertility and family building benefits provider, we envision a world where anyone can have a child when they want to, while acknowledging we need to do more to raise awareness of these issues and truly eliminate these health disparities.   

Infertility in the BIPOC Community 

Infertility impacts 1 in 8, but BIPOC women experience infertility at even higher rates than their white counterparts, even when taking into account socioeconomics or risk factors such as fibroids. Despite these higher rates of infertility, Black women are less likely to access treatment and if they do, may wait twice as long before seeking help.  

There are many factors that contribute to these disparities, including health conditions that disproportionately impact Black women. One common cause of infertility is fibroids, which are noncancerous tumors made of muscle that can grow in the uterus. Although they can be completely harmless, they can have an effect on fertility and cause complications when giving birth. 

Black women are three times as likely to have fibroids than white women when adjusted for other confounding factors. About 42 per 1,000 U.S. women are hospitalized as a result of fibroids every year, but Black women have increased rates of hospitalization, myomectomies, and hysterectomies compared with white women. 

A 2008 comparison of 139,027 assisted reproductive technology (ART) procedures sought to analyze how demographics might influence IVF success rates and found Asian women had lower odds of pregnancy than white women, and live birth rates were reduced in Asian, Black, and Hispanic women—but not white women. 

Unfortunately, there isn’t even enough data to show if Native American women experience decreased fertility rates, although one study found lower pregnancy rates. The authors acknowledged there are many factors that impact the study of racial and ethnic disparities (social, cultural, nutritional, environmental, physical, etc.), but this data demonstrates significant differences in ART treatment outcomes for BIPOC women.  

Rooted in Racism 

Although researchers cannot pinpoint exactly why the fertility rates are lower for BIPOC women, there are several theories.  

One prominent hypothesis about why there are lower health outcomes in the Black community could be due to reduced access to medical care and comprehensive health insurance, which stops patients from getting even basic health care. However, poorer outcomes could also be due to “long-term physiologic programming”—or in other words, stress.  

The systematic racism in our society causes massive amounts of stress, flooding the body with cortisol which may increase health risks. This theory, which is known as the “weathering hypothesis” was first proposed in 1992 and suggests that increased cortisol levels associated with stress cause Black women to age faster. This can help in understanding why Black women experience higher rates of infertility than their white counterparts. 

Cultural practices and differences could also affect why Black women and other women of color experience higher rates of infertility. A 2015 study found that Black women avoid sharing about their infertility with their closest family members and friends and even experience discomfort talking with their doctors, which could lead to delays in treatment that mean increased difficulty conceiving. 

The study proposed this silence could be due to the private nature of conception, a desire to be self-reliant, or to cultural expectations of privacy. One respondent mentioned, “I never said anything to anyone else because in our culture it was not something that you shared.” 

Overcoming Historical Trends 

It is also worth noting that many people in the BIPOC community distrust the U.S. healthcare system because of the long history of racist and unethical practices by medical professionals on BIPOC populations. This history is vast and has affected countless unknown people. Examples include:  

  • The exploitation of Henrietta Lacks, the Black woman patient whose cervical cells were taken by researchers in 1951 without her or her family’s consent or remuneration to create the first human cell line, “HeLa,” which has been used globally to advance modern medicine—including vaccine development and in vitro fertilization.  
  • The Tuskegee Syphilis study where researchers experimented on Black men infected with syphilis for 40 years without their informed consent, intentionally withheld the necessary treatment to cure them, and only ended the study in 1972 when it was publicly condemned. 
  •  The first large-scale clinical trial for birth control pills where researchers in the 1950s, relying on eugenics, secretly targeted Puerto Rican women in the poorest cities in Puerto Rico without their informed consent to test high-dose birth control pills. 
  • The forced sterilization of ICE detainees today.  

Even the American College of Obstetrics and Gynecology has admitted they have a troubling history with racial bias. “Medicine, including the field of obstetrics and gynecology, has engaged in practices that were very harmful to women of color,” they said in a 2017 statement. There has been documented experimentation on enslaved Black women—without the use of anesthesia— to advance gynecological medicine. 

This has likely contributed to the racial bias and disparate medical outcomes that exist today. Pregnancy-related deaths are 3.3 times more likely among Black women and 2.5 times more likely among Native Americans and Alaskan Native women than white women. Even once we address infertility rates in the BIPOC community, pre-and post-natal care varies widely among racial lines.   

Representation Matters in Medicine 

An important step in addressing disparities among infertility and maternal care is representation in medicine. Currently, people of color are underrepresented both in medicine as a whole and in the infertility subspecialty.  

Research suggests that health outcomes for Black patients improve when treated by Black doctors. One study  found treatment by a Black doctor reduced the Black-white male gap in cardiovascular mortality by 19%. Having a provider of the same race can also improve how you feel about your treatment. In another study, Black patients who visited physicians of the same race found their visits more satisfying than seeing doctors of other races.  

Although there aren’t studies comparing outcomes when patients are treated by the same race in fertility, having a provider that one can relate to and understand is important to many patients. However, due to the low rates of physicians of color—especially female physicians of color—it’s important to address the root of the problem too—implicit bias. Implicit biases are the opinions and stereotypes that affect behavior without the person realizing it.

Someone can believe they are not racist, but unconsciously treat particular groups of people differently. When implicit bias bleeds into the healthcare system, it means a diminished level of care for that specific group—often without providers even realizing it. The best way to end implicit biases is for providers to recognize these biases and educate themselves.  

One such stereotype is the myth that Black women are hyper-fertile or can’t have infertility, but this idea is racist. It roots from forced reproduction under slavery when Black women were required to bear as many children as possible so they too could be sold. Infertility is such a specialized area of medicine it most often requires a referral. If the referring physician—even implicitly–doubts infertility in a patient of color it could mean they never get the treatment they need.  

How to Be Your Own Advocate 

Organizations are trying to address the systematic racism that affect fertility and fertility care in people of color—ASRM recently created a diversity taskforce and here at Progyny we have implemented specific training for our Patient Care Advocates (PCAs) to ensure our members get the care they need. However, it’s it is also important you be your own best advocate.  

  • Do the search – Find a provider you are comfortable with. Don’t be afraid to switch providers if you feel you’re not being listened to.  
  • Come prepared – Bring a list of questions and comments in advance so you don’t forget anything. 
  • Bring something you can take notes and document everything – Write a detailed journal with your medical information and symptoms. If you feel you are not being treated fairly, express your dissatisfaction in writing.  
  • Bring a trusted friend or family member – You don’t need to go through this alone, bring someone who can offer emotional support and back you up if necessary. 
  • Speak up – Don’t be afraid to speak up if you have questions or need clarification.  Detail any symptoms or issues, and avoid downplaying them and how they affect your life. Use keywords like “concerned” or “alarmed” or “scared.” Medical professionals are trained to listen out for them so keywords can help to communicate what you’re feeling.
  • Ask for documentation – Ask for copies of your medical records so that you can keep a set of your own records, across doctors.   
  • Get a second opinion.  If a provider refuses treatment or test you think is appropriate, ask them to document their refusal including specifics, and get a second opinion.  
  • Find a community – Look for a support group or start one. Going through this with others in a similar situation may help you during this time.  

Resources + Support Groups 

Infertility can be an isolating experience so it’s especially important to find a community of people with whom you can share. Not only can they provide emotional support, but they can also provide advice to help you on your path to parenthood. Browse the resources below dedicated to providing infertility support or advocacy for the BIPOC community. This list is by no means exhaustive and if you have resources to share, please get in touch.  

Additional Resources 

Progyny is committed to improving family-building equity by providing comprehensive fertility benefits. Our benefit is designed to help anyone build a family, irrespective of race, gender, age, sex, or ethnicity. Additionally, Progyny PCAs are trained to support a diverse workforce with culturally competent care. We strive to provide support and clinical education so that you are prepared for your unique path to parenthood. If you’re a Progyny member, please  reach out to your dedicated PCA  with any questions.  

If you do not have fertility and family building benefits, visit progyny.com/talktohr to learn more about how you can get comprehensive fertility coverage at your organization.