Racial Disparities in IVF Accessibility and Fertility Care
Fertility issues can impact a person’s health and well-being in many ways. From financial strain, depression, anxiety, relationship problems, and social isolation to emotional challenges, struggling with infertility can be incredibly heartbreaking. Fertility treatments can range from in vitro fertilization (IVF), intrauterine insemination, genetic testing, medications and surgical interventions.
There are many different factors that contribute to the stress of family-building including keeping track of ovulation, a limited number of local fertility clinics, lack of health benefits, inadequate insurance coverage, high cost of fertility treatments, failed IVF cycles, unsuccessful embryo transfers, and strict insurance mandates.
Related: The Facts About Infertility
Understanding the Accessibility Issues of IVF and Fertility Care
The quality and access to fertility care and assisted reproductive techniques (ART) vary for different demographics. People of color (POC) experience cultural stigma and lack of access to culturally competent care. Racial disparities are long-standing gaps in healthcare and are associated with negative outcomes for people of color.
We spoke with Dr. Loree Johnson about how racial disparities in fertility services affect people of color and asked for her advice on how to ensure those seeking fertility treatments have access to safe and equitable care.
Dr. Johnson is a Licensed Marriage and Family Therapist with a virtual practice that serves clients in California, Washington, and Florida. As a result of her reproductive story, Dr. Johnson sought training in fertility counseling and reproductive trauma.
Dr. Johnson has been an active member of the American Association for Marriage and Family Therapy for more than 20 years and has served in various board positions at the state and national levels.
Most recently, she served on the Anti-Racism Task Force for the Mental Health Professionals Group of the American Society for Reproductive Medicine (ASRM). In addition to reproductive psychology, Dr. Johnson is passionate about training therapists and reducing the disparities in infertility and loss communities that impact access to treatment, care, and outcomes.
Current Racial Disparities in Fertility Care
Dr. Johnson says racial disparities in fertility impact people of color in many different ways. Although infertility can affect everyone, its impact is not equal. She adds, “Disparities continue to exist in the provision of reproductive care, including fertility evaluation and treatment”.
Dr. Johnson provided how racial disparities impacted different marginal groups:
“Black women are thought to be twice as likely to experience infertility compared to their White counterparts. Hispanic/Latina, Asian and Native/American Indian women also experience infertility in greater numbers as well. Black and Latina women are more like[ly] to seek fertility care later in life due [to being] less likely to be counseled about reproductive health.”
It is estimated that the Asian American Pacific Islander (AAPI) community makes up 5.7% of the US population according to the 2019 US Census Bureau. Despite this, there is little research that has been done on infertility in the AAPI community.
A review article showed that only 10 studies over the past 15 years have looked at this specific population. It showed that AAPI patients are more likely to wait longer to seek infertility treatment, to experience issues in conceiving and experience lower success rates compared to white patients.
The researchers suggest that although Asian Americans are environmentally and genetically predisposed to fertility challenges, their desire to seek infertility services may be due to cultural factors. The review concluded that further research needs to be conducted in Asian racial and ethnic groups which requires the destigmatization of infertility.
Dr. Johnson expanded on some of the factors that may explain racial disparities in fertility medical treatments and supported future research to understand the gap.
“Stigma, lack of communication about, and historical narratives within the Black community about infertility have been attributed to the disparities in access and utilization of fertility care. However, clear data about the disparities in other communities of color need further research to determine the cause.
In addition to the cultural stigma associated with fertility care, medical mistrust, institutional racism, health inequities and environmental factors are also factors.”
Negative Health Outcomes Due To Racial Disparities In Fertility Care
Racial disparities in fertility care and prenatal health services contribute to multiple adverse outcomes. Infant mortality rate (IMR) is one the strongest indicators of the health of a country. It reflects the quality of public health practices, maternal health and access to health care.
In the US, the IMR for non-Hispanic blacks is 11.11 infant deaths per 1000 live births. This is almost twice the rate of the national IMR of 5.97 infant deaths per 1000 live births.
In addition, black infants are more than twice as likely to die before their first birthday compared to white infants.
An integrative review looked at racial discrimination and adverse birth outcomes. Compared to white populations, people of color are more likely to experience poor birth outcomes such as small for gestational age, preterm birth and low birth weight due to racial discrimination in care.
The review included studies that showed significant associations between factors related to birth outcomes including employment opportunities, neighborhood characteristics, inflammatory markers and entry into prenatal care with racial discrimination. It also included qualitative studies that described experiences with institutional racism that impacted the access and quality of prenatal care.
It’s been shown that pregnancy-related deaths occurred 3.2 and 2.3 more times among Black and Native American women, respectively, compared to white women. The risk increases substantially with older black women.
Lack of Culturally Competent Care
According to The Office of Minority Health, Department of Health and Human Services, the definition of culturally competent care is the following:
“Culturally competent care is defined as care that respects diversity in the patient population and cultural factors that can affect health and health care, such as language, communication styles, beliefs, attitudes, and behaviors.”
Dr. Johnson explained that the lack of culturally competent care delivered by clinicians is one of the factors that is contributing to the inaccessibility of fertility care for people of color.
“Medical bias exists to the point that differences in health contribute to diagnoses that may impact fertility. Doctors lack knowledge about racial disparities and the decisions providers make about contraception (when and type offered), treatment for reproductive issues, perception of pain, and early detection for conditions like uterine fibroids that can impact the risk for infertility.
As patients seek answers, they face additional barriers when attempting to seek care from a provider who looks like them, further delaying evaluation and treatment.”
Tips For People of Color Seeking Fertility Care
If you identify from the Black, Indigenous or People of Color (BIPOC) community and are seeking fertility treatments, you are not alone in your struggle. It’s important that you feel safe, comfortable and empowered in your journey.
We asked Dr. Johnson for her advice on what people of color can do to ensure they have access to and receive safe and equitable fertility care. Here’s what she had to say:
“According to the Association of American Medical Colleges, doctors of color are still the minority. Studies show that Black people have better health outcomes when cared for by a Black provider.
However, Black and Hispanic physicians comprise approximately 6% of physicians in the US. Finding a provider of color who looks like the population they serve may be challenging.
Having equitable and fair access to care involves being educated.”
Specifically, Dr. Johnson had the following to say:
“People of color can ensure they have access to and receive safe and equitable care by doing the following:
- Learning to become one’s own advocate
- Coming prepared to each appointment with questions
- Bringing a support person to each appointment
- Getting a second opinion when needed”
Resources for Equitable Fertility Care and IVF Accessibility
Dr. Johnson offered some reputable resources for people of color who are struggling with infertility.
- The Broken Brown Egg: A wealth of information that provides links to various types of medical, emotional, and social support for individuals who are undergoing a tough reproductive journey.
- Fertility For Colored Girls: A resource that is fighting infertility and giving hope by providing awareness, education, support and encouragement for African American women and other women of color experiencing fertility issues.
She explained that there currently aren’t many resources within the reproductive community for Latina, Asian or Native women. However, she mentioned that, “individuals who represent each group have created a space on social media to further highlight the universal struggle with fertility”.
Other fertility care resources include the following:
- Resolve (The National Infertility Association): A trusted resource for the larger infertility community.
- ReproductiveFacts.org: A patient education website created by the American Society for Reproductive Medicine (ASRM). ASRM is a “multidisciplinary organization dedicated to the advancement of the science and practice of reproductive medicine”.
- Society for Assisted Reproductive Technology (SART): A non-profit organization that sets the standards for infertility care by evaluating fertility clinics and verifying that they meet the practices and standards for assisted reproductive technology.
Agency for Healthcare Research and Quality. (2019). Improving Cultural Competence to Reduce Health Disparities for Priority Populations | Effective Health Care Program. Ahrq.gov. https://effectivehealthcare.ahrq.gov/products/cultural-competence/research-protocol
Alhusen, J. L., Bower, K. M., Epstein, E., & Sharps, P. (2016). Racial Discrimination and Adverse Birth Outcomes: An Integrative Review. Journal of Midwifery & Women’s Health, 61(6), 707–720. https://doi.org/10.1111/jmwh.12490
Cousineau, T. M., & Domar, A. D. (2007). Psychological impact of infertility. Best Practice & Research Clinical Obstetrics & Gynaecology, 21(2), 293–308. https://doi.org/10.1016/j.bpobgyn.2006.12.003
Ortega, P., & Williams, B. (2020, August 9). For Black and Latinx People, What Does Race Have to Do With Health? Www.medpagetoday.com. https://www.medpagetoday.com/infectiousdisease/publichealth/87966
Rooney, K. L., & Domar, A. D. (2018). The relationship between stress and infertility. Dialogues in Clinical Neuroscience, 20(1), 41–47. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016043/
The National Institutes of Health. (2020, November 17). NIH to fund research of racial disparities in pregnancy-related complications and deaths. National Institutes of Health (NIH). https://www.nih.gov/news-events/news-releases/nih-fund-research-racial-disparities-pregnancy-related-complications-deaths#:~:text=The%20racial%20disparities%20in%20pregnancy-related%20mortality%20are%20stark:
Vu, M., Nguyen, A., & Alur-Gupta, S. (2021). Asian Americans and Infertility: Genetic Susceptibilities, Sociocultural Stigma and Access to Care. F&S Reports, 3(2). https://doi.org/10.1016/j.xfre.2021.12.004
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