Inequality in Infertility: Black, Indigenous and People of Color

Blog, Let's Talk Fertility Inequality in Infertility: Black, Indigenous and People of Color

Posted on December 29, 2020December 29, 2020by jordan.pierre

December 29

Understanding the history of inequality, how to be an advocate, and important resources to help along the way

Inequality comes in many forms, but race-related disparities in fertility and maternal health, especially among Black women, are particularlyresistant to change. Black, Indigenous and People of Color (BIPOC) continueto have higher rates of infertility and lower rates of accessingfertilitycare 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 toraise awareness of these issues and truly eliminate these health disparities.

Infertilityin the BIPOC Community

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

There are many factorsthat 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 musclethat can grow in the uterus. Although they can be completely harmless, they can have an effect on fertilityand 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. womenare 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)proceduressought to analyze how demographics might influence IVF success rates and found Asian women had lower odds of pregnancythan 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 studyfound lower pregnancy rates. The authorsacknowledged 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 BIPOCwomen, there are several theories.

One prominent hypothesis about why there are lower health outcomes in the Black community could be due toreduced 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 systematicracismin our society causes massive amounts of stress, flooding the body with cortisol which may increasehealth risks.This theory, which is known as the 'weathering hypothesis' was first proposedin 1992 and suggeststhat increased cortisollevels 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 studyfound that Black women avoid sharing about their infertility with their closest family members and friendsand even experience discomfort talking with their doctors, which could lead to delays in treatment that mean increased difficulty conceiving.

The study proposed thissilence could bedue to the private nature of conception, a desire to be self-reliant, orto cultural expectationsof privacy. One respondent mentioned, 'I never said anything to anyone else, because in our cultureitwas 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 BIPOCpopulations. Thishistory is vast and has affectedcountless unknown people.Examples include:

• The exploitationof Henrietta Lacks, the Black womanpatient 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 advancemodern medicine-includingvaccine development andin vitrofertilization.
• The Tuskegee Syphilis study where researchers experimented onBlack men infected withsyphilis 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 firstlarge-scaleclinical trial for birth control pills where researchersin the 1950s, relying on eugenics, secretly targeted Puerto Rican womenin the poorest cities inPuerto Rico without their informed consent to test high-dose birth control pills.
• Theforced sterilization of ICE detainees today.

Even theAmerican 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 saidin a 2017 statement. There has been document 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 exists 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 womenthan white women. Even once we address infertility rates in the BIPOC community, pre-and post-natal care varies widelyamong racial lines.

Representation Matters in Medicine

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

• 5% of doctors are Black, 17% are Asian, 6% are Hispanic and only 0.3% are Native American.
• 12% of OBGYNs are Black, 12% Hispanic, 4% Asian.
• Of the 336 people that responded to the American Society of Reproductive Medicine's 2016 surveyof its physicians,9% were Asian, 6% were Hispanic, 3% were African American, and only 0.3% Native American.

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

Although there aren't studies comparing outcomeswhen patients are treated by the same racein fertility, having a provider that onecan relate to and understand is importantto 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 personrealizing.

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. The best way to endimplicit biases is for providers torecognize these biases and educate themselves.

One such stereotype is the myth that Black women are hyper-fertile or can't have infertility, but this ideais racist. It roots from forced reproduction under slavery when Black women wererequired to bear as many children as possible so they too could be sold.Infertilityis 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 implementedspecific trainingfor 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 - Bringa list of questionsand commentsin 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 questionsor 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 a treatment or test you think is appropriate, ask them to document their refusal includingspecifics and get a second opinion.
• Finda 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 communityof people with whom you can share. Not only can they provide emotional support, but they can also provide advice ato 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.

• Fertility for Colored Girls
• The Cade Foundation
• The Broken Brown Egg
• Health in Her Hue(not fertility specific)

• Natal(podcast)
• Sisters in Loss
• Black Mamas Matter
• National Birth Equity Collaborative
• Black Women's Health Imperative

Additional Resources

• Progyny'sBlack fertility and maternal health webinar
• ASRM's Diversity Task Force

• American Journal of Public Health, Black Lives Matter: Claiming a Space for Evidence-Based Outrage in Obstetrics and Gynecology
• Fertility IQ, Fertility for Black Families
• SpringerLink, The pervasive issue of racism and its impact on infertility patients: what can we do as reproductive endocrinologists?
• Chicago Tribune, Here's why many black women are silent about their struggle with infertility

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 PCAwith any questions.

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

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