Navigating Unequal Paths

There is a paucity of literature focused on the unique experiences and obstacles encountered by historically marginalized people with infertility, particularly during the early steps in the journey.

Abstract

Infertility is one of the most emotionally devastating conditions experienced during the reproductive window. Although not life-threatening, it significantly erodes quality of life for those with the diagnosis. Disturbingly, data demonstrate the existence of profound racial disparities that persist along the entire journey of infertility. Though most of the scientific literature emphasizes disparities in clinical outcomes after infertility treatment, it is important to recognize that these inequities are the downstream effect of a series of distinct challenges encountered by historically marginalized people on their path to parenthood. In this review, we explore the current state of knowledge concerning the inequities at each “step” in the path to overcome infertility challenges and propose solutions to create a future in which reproductive medicine is truly equitable, accessible, and supportive for everyone.

Amidst the multifaceted landscape of reproductive medicine, one disconcerting reality has captured increasing attention: for many, persistent racial disparities continue to shape the path to parenthood. These disparities highlight the heterogeneous reproductive health experiences among different racial and ethnic groups, emphasizing the importance of understanding the complex intersectionality of factors that contribute to these inequities. The theoretical lens through which these disparities are viewed has existed for decades and is the product of Black female scholars who reclaimed female reproductive autonomy with the creation of the Reproductive Justice framework.¹ This framework has three core values, which are 1) the right to have a child, 2) the right to not have a child, and 3) the right to parent a child or children in safe and healthy environments.

This review focuses on racial disparities throughout the journey to overcome infertility, that is, the right to have a child. It is important to recognize that the disparate clinical outcomes after fertility treatment, which are particularly well-documented in the setting of in vitro fertilization (IVF) due to mandated reporting to the Centers for Disease Control and Prevention (CDC), represent a downstream effect of the larger systematic inequities that exist, capturing only a fraction of the broader picture. Before we can make strides toward equity, it is crucial that we look back and thoroughly examine the early steps in the journey. Although every patient's experience is unique, there are multiple milestones that individuals typically achieve as they progress along their path to overcome infertility challenges (Fig. 1). The base of the pyramid represents the total population of people who wish to be pregnant, and each successive layer reflects attrition along the journey. Although clinical factors play an important role in determining a patient's outcome, for many, structural factors pose the greatest obstacles to reaching the top of the pyramid. Although clinical success typically is defined as achieving a live birth, true success will also include the delivery of culturally aware and patient-centered care throughout the process.

Fig. 1. Marsh-Weiss infertility journey model. IVF, in vitro fertilization.

Weiss. Racial Disparities in the Infertility Journey. Obstet Gynecol 2023.

Although disparities in fertility care affect many underserved populations, historically marginalized communities continue to be underrepresented in the scientific literature. Of the racial groups, the experiences of the Black community are most commonly included, although not nearly enough. The literature also predominantly employs gender-specific terminology, which reflects the prevailing heteronormative and cisnormative biases inherent in reproductive medicine research. To maintain consistency with the cited literature, we also use gender-specific terms while acknowledging that many individuals identify beyond the traditional woman–man binary. In this review, we explore the current state of knowledge concerning the inequities at each “step” in the path to overcome infertility challenges and propose solutions to create a future in which reproductive medicine is truly equitable, accessible, and supportive for everyone.

WHO IS UNABLE TO CONCEIVE?

Infertility is a burden that affects women across all demographic groups. According to a report based on the 2006–2010 National Survey of Family Growth, approximately 6% of married women aged 15–44 years in the United States experience infertility, with a higher prevalence observed among Black women compared with White women (adjusted odds ratio 1.84, 95% CI 1.10–3.06).² However, a more recent analysis by Kelley et al,³ using data from the National Health and Nutrition Examination Survey cycles from 2013 to 2016, estimated the overall prevalence of infertility in the United States to be 12.5% and did not find significant differences in infertility rates by race. It is important to note that both surveys adhere to the traditional definition of infertility, which revolves around a heterosexual couple's struggle to conceive. Consequently, single individuals and members of the LGBTQ+ (lesbian, gay, bisexual, transgender, queer+) community are excluded from these efforts to quantify the prevalence of infertility and the corresponding demand for fertility care.

WHO IS FORMALLY DIAGNOSED WITH INFERTILITY?

Black and Hispanic women face significant disparities in seeking care for infertility compared with White women. Studies have shown that Black women are half as likely to be evaluated for infertility and that, compared with White women, Black and Hispanic women had been attempting to conceive 20 months longer before receiving care.^4–6 The underlying causes of these inequities are not well understood but likely involve factors such as limited fertility knowledge, misconceptions, and mistrust of the health care system among Black women, compounded by physician bias based on longstanding stereotypes.⁷ A recent study using a validated fertility-knowledge questionnaire found that non-Hispanic Black women scored significantly lower than non-Hispanic White women in overall fertility awareness, including areas such as natural fertility, infertility risk factors, and infertility treatment.⁸ Women who self-identified as a race and ethnicity different than non-Hispanic White were more likely to overestimate the age at which a woman's ability to conceive declines most rapidly.

Black and Hispanic women have reported difficulties in finding physicians with whom they feel comfortable, sharing that they have felt judged by fertility clinicians based on their racial characteristics or physical appearance.⁶ Studies have also shown that there is a concern among Black women that fertility physicians may have hidden biases against their desire to procreate and may not prioritize providing optimal fertility care.⁹ Given the historical and contemporary experiences of inequity endured by Black women, it is not surprising that, in the face of viewing the health care system as untrustworthy, they may delay or avoid seeking infertility evaluations.¹⁰

Moreover, feelings of shame, guilt, failure, and aversion to the “infertile” label have been reported among Black women.¹¹ The stereotype of Black women as hyperfertile contributes to the stigma and misconception that infertility is rare among Black women.¹² This false belief can lead to feelings of isolation when confronted with an infertility diagnosis. Concerns related to perceived failure to conceive, societal stigma, and disappointing their spouse are more pronounced among Black women.⁶

WHO IS REFERRED TO A SPECIALIST?

Limited research exists on referral patterns and patient–practitioner interactions in fertility care, but a study by Missmer et al⁶ revealed that, relative to White women, Black women were five times more likely to have self-referred and Hispanic women were four times as likely to have been referred to the clinic by a friend or family member. Although not directly comparable, several studies have examined racial disparities in referral for medically necessary fertility-preservation services. Rates of counseling for fertility preservation by oncologists are significantly lower for Black patients compared with White patients.¹³ Additionally, Black patients are less likely to seek fertility preservation after a cancer diagnosis.¹⁴ These findings indicate that, even when Black women recognize the need for fertility care, they may face challenges in accessing appropriate care due to racism or unconscious biases held by health care professionals.

WHO GETS AN APPOINTMENT WITH A SPECIALIST?

Black women who meet the criteria for infertility are less likely to undergo a preliminary evaluation compared with White women.^4,15 A study conducted in 2011 found that Black and Hispanic women faced difficulties in securing appointments with physicians and taking time off from work for appointments and had to travel an average of 19 additional miles to reach fertility centers.⁶ However, a more recent study in 2021 did not observe racial differences in the reported difficulty of taking time off work or getting appointments with fertility specialists.¹⁶

Multiple studies have also demonstrated that Black and Hispanic women with infertility wait longer to see a specialist. Analysis of data from the Furthering Understanding of Cancer, Health, and Survivorship in Adult Women's study revealed that Black women sought medical attention for infertility a median of 2 years after reporting the issue, compared with 1 year among White women.⁴ Furthermore, even in states with mandated and comprehensive insurance coverage for fertility services, Black women tended to be older and experienced a significantly longer duration of infertility before seeking care compared with White women.⁵ Although these findings do not necessarily represent difficulty getting an appointment with a specialist, these delays in seeking care have been associated with a higher prevalence of diminished ovarian reserve among Black women. Additionally, Black women are more likely to receive care at smaller clinics that had lower overall success rates, further affecting their prognosis.¹⁷ It is unclear what is driving this difference in clinic profile (eg, cost, geography, referral patterns).

WHO RECEIVES FERTILITY TREATMENT?

According to data from the CDC, the number of assisted reproductive technology (ART) cycles performed in the United States nearly doubled between 2009 and 2019, with 330,773 cycles reported.¹⁸ However, the majority of individuals undergoing fertility treatment are still White, highly educated, and financially privileged.^19,20

A study by Janitz et al,²¹ which analyzed multiyear data from the National Survey of Family Growth, found that only 8.7% of women in the sample sought fertility services and that Black women and American Indian or Alaska Native women had a lower prevalence of receiving treatment compared with other racial and ethnic groups. Similarly, in a retrospective cohort study involving 554,995 live births associated with fertility treatment, Black and Hispanic women were approximately 70% less likely to receive any form of infertility treatment compared with White women.²² Moreover, White women accounted for the majority of live births associated with any type of infertility treatment (53.8%), whereas Black and Hispanic women were the least represented groups (4.0% and 7.6%, respectively).

WHO ENGAGES IN IN VITRO FERTILIZATION?

In vitro fertilization is the most successful treatment due to its high pregnancy rates relative to other treatment options. Unfortunately, IVF is also the costliest form of fertility treatment and necessitates a substantial investment of time and effort, often requiring adjustments to daily routines and lifestyle choices. According to data from the CDC's National ART Surveillance System, the utilization of IVF among Black, Hispanic, and American Indian or Alaska Native women is below the national average. In 2014, there were 1,434 IVF cycles performed per million Black women and only 997 per million among Hispanic women, compared with 2,888 cycles per million White women.²³ Even after adjusting for relevant factors such as age, marital status, education, and payment method, a study using the CDC's 2017 Natality Public Use file showed that IVF utilization among White women remained higher than among Black women.²⁴

Economic barriers have been suggested as an explanation for the racial disparities in IVF utilization. Several studies have examined IVF utilization in the military population, where access to care is more equitable. Two studies found a fourfold increase in IVF utilization among Black women compared with the national utilization rate, whereas Hispanic women had decreased utilization.^25,26 A study that attempted to disentangle the independent effects of household income, education, and race on the utilization of infertility services found that, though higher socioeconomic status was associated with greater utilization of fertility treatments, spending more on fertility care was not directly related to improved outcomes.²⁷ Nineteen states have implemented laws that require private third-party insurers to cover infertility diagnosis or treatment, including IVF.²⁸ Initially, Black and Hispanic women continued to be underrepresented in IVF utilization even in states with comprehensive insurance coverage.¹⁹ However, more recent analyses using national data have shown more promising results.²⁹

An analysis of National ART Surveillance System data from 2014 showed higher ART utilization among Black women in states with IVF mandates compared with states without mandates.²³ However, utilization rates for Black and Hispanic women were still lower than the overall utilization rate for those states. Another analysis using SARTCORS (Society of Assisted Reproductive Technologies Clinical Outcomes Reporting System) data found no evidence that state mandates mitigate racial and ethnic disparities in IVF utilization.³⁰ Although utilization was higher across all racial groups in states with mandates, the increase was greatest for White women. It is important to note that more than a third of cycles reported to national registries do not include information on race, which may affect the accuracy of these findings.

WHO GETS PREGNANT?

In vitro fertilization is unique among fertility treatments in that it is the only treatment for which the reporting of pregnancy outcomes is mandated by the federal government. Although other treatment options exist (eg, use of ovulation-stimulation medications with or without intrauterine insemination [IUI]), the absence of mandatory reporting for these interventions has led to a relative dearth of comprehensive data on their effectiveness and outcomes. Of the few studies of IUI cycles, the largest (n=1,495 patients) found that race affected timely access to infertility care, diagnosis, and treatment cycle characteristics but not pregnancy rates.³¹

In vitro fertilization studies have predominantly found lower clinical pregnancy rates among Black women compared with White women. The first large-scale study of racial differences in IVF outcomes analyzed data from 80,309 IVF cycles in 1999–2000 and found lower clinical pregnancy rates among Black women using fresh, nondonor embryos.¹⁷ Subsequent studies analyzing data from 2004–2006 and 2014–2016 also demonstrate worse clinical pregnancy rates for Black women.²⁹ As with other analyses of National ART Surveillance System and SARTCORS data, these studies were limited by their large proportion of missing race data.

Smaller studies conducted at single IVF centers have been able to control for confounding variables more effectively. These studies consistently show lower odds of clinical pregnancy among Black women compared with White women, even after controlling for factors such as age, body mass index, hormone levels, smoking, and infertility diagnosis (relative risk 0.88; 95% CI 0.78–0.99 and odds ratio 0.63; 95% CI 0.44–0.88, respectively).^26,32 A study of frozen embryo transfer cycles found no difference in clinical pregnancy rates between Black and White women,³³ whereas another study observed lower clinical pregnancy rates among Black women even after accounting for confounding variables.³⁴

Recent studies have also investigated racial disparities in pregnancy rates among women who conceive with the use of donor eggs. The analysis of third-party ART cycles showed significantly lower clinical pregnancy rates among Black recipients of donor eggs compared with White recipients.³⁵ In a study of a racially diverse donor oocyte bank, Black recipients had the lowest probability of pregnancy regardless of the race of the oocyte donor.³⁶ It is, however, important to acknowledge the limitations of these studies, such as missing race data and variations in study populations and methodologies.

WHO HAS A LIVE BIRTH?

Because few studies exist examining the effects of race on the outcomes of IUI cycles, most of the literature on live-birth rates after fertility treatment is based on data from the national ART registries. Numerous studies conducted over the past two decades have consistently found lower live-birth rates among Black women after ART.^9,17,29,37 The most recent analysis of data from SARTCORS demonstrates that Black women had lower live-birth rates and cumulative live-birth rates for their initial ART cycle, even after accounting for confounding factors.²⁹ Although this database continues to be limited by the high prevalence of missing race information,³⁸ smaller studies with more complete data have reported similar disparities, with live-birth rates among Black women being nearly half those among White women after adjusting for confounders.³²

One contributing factor to the racial disparities in live-birth rates is the higher incidence of spontaneous abortions among Black women after ART treatments.^25,39 In a study of 1,457 women undergoing IVF in a military health system, there was a 51% increase in the spontaneous abortion rate in Black women. An analysis of an electronic health record database used by 140 IVF clinics also found that Black women had significantly more miscarriages than White women. Additionally, all three analyses of SARTCORS data have found higher pregnancy loss rates among Black women, independent of confounders.^29,37,40 In the 2004–2006 analysis, Black women experienced a 21.8% miscarriage rate, significantly higher than the rates seen in other groups.⁴¹

Rates of very early preterm, early preterm, and preterm singleton births have been found to be significantly higher among Black and Hispanic women compared with White women.⁴² Neonates of Black women also tend to have the shortest gestations and lowest birth weights in these analyses.⁴¹ Furthermore, when compared with other patient characteristics that may influence IVF outcomes, Black race has the strongest negative association with a good perinatal outcome (defined as the birth of a singleton neonate at term weighing 2,500 g or more).⁴³

WHO FEELS SAFE, CENTERED, AND SEEN ON THE JOURNEY?

The existing literature on women with infertility in the United States has focused primarily on the experiences of White women, and there is a significant lack of research specifically exploring the perspectives of Black and Hispanic women.^16,44,45 In recent years, a small number of qualitative studies have emerged that have begun to shed light on the lived experiences of Black and Hispanic women with infertility.^6,11,46–49 Qualitative studies have identified a common sociocultural theme among Black women: discrimination and institutional mistrust have a significant effect on the utilization and experience of the fertility journey. Black women in these studies felt that some physicians may dismiss their fertility concerns, assume that they can easily conceive, emphasize birth control rather than procreation, and discourage them from pursuing parenthood.⁴⁶ Hispanic women report more social stigma surrounding infertility and may have more ethical and religious concerns about ART treatment.⁵⁰ It is important to note that most of the women included in these studies had already overcome initial obstacles and sought medical care, indicating that discrimination may exert an even stronger influence on those who do not progress to this stage (Fig. 1).

DISCUSSION

It is evident that historically marginalized women with infertility face inequities at every stage of the path to parenthood (Table 1). These disparities manifest as lower health care service utilization rates, lower pregnancy rates, and lower live-birth rates compared with White women. There is a paucity of literature focused on the effect of race during the early steps of the infertility journey, such as timing of formal diagnosis, referral to specialists, and comprehensive evaluations. As a result, there is a pressing need to understand the unique experiences and obstacles encountered by historically marginalized women with infertility. Doing so will require a focus on intersectionality and acknowledgement of the influence of positionality in research. If we want to ensure equitable and inclusive care for all individuals seeking fertility treatment, we must shift our focus from identifying disparities to dismantling them.

Table 1.

Summary of Evidence Using the Infertility Journey Model

How could this be achieved? If research funding for this endeavor is given priority, it will enable the development of evidence-based interventions to tackle disparities at each of the aforementioned stages. However, because conducting high-quality research requires time, it is crucial to seize immediate opportunities for action in the interim. Initially, the emphasis should be on increasing the number of historically marginalized women with infertility who receive care from fertility specialists. Achieving this goal will likely require a multipronged approach, which includes 1) addressing medical gatekeeping practices, 2) making fertility treatment more affordable and financially accessible, 3) developing a more diverse clinician pipeline, and 4) fostering a culture in which the topic of infertility is normalized.

Although financial barriers remain significant, especially considering the persistent racial wealth gap in the United States, we must avoid making assumptions about individuals' ability to afford fertility treatment. We also need to avoid making assumptions about who wants, needs, or deserves a referral to a subspecialist—referrals should be offered to everyone who meets the medical criteria for infertility. To ensure that all women who may experience infertility seek appropriate care, basic fertility awareness and education should be integrated into wellness visits. The responsibility should not lie solely with the patient; just like discussions about contraception, fertility goals should be a routine topic of conversation during each visit. Progress has been made with the increasing inclusion of race as a social construct in infertility research, but there is much work remaining. Together we can create a future in which reproductive medicine is truly equitable, accessible, and supportive for everyone—where reproductive justice is not just a theoretical framework but a reality.

Figure.

No available caption