Improving access to care and delivery to marginalized and vulnerable populations: a committee opinion

Infertility affects an estimated 6.7 million people in the United States and up to an estimated 180 million people worldwide (1–3). Still, these numbers likely underestimate the actual burden of infertility and the proportion of the population seeking fertility services, if using the most recent American Society for Reproductive Medicine (ASRM) definition (4). Infertility is a public health concern on a global scale, which has widespread medical, social, emotional, interpersonal, and economic impacts (5–8). Despite the pervasive effects of infertility, many individuals remain untreated or undertreated, with only an estimated 24% of infertility needs in the United States being met (9, 10). These disparities are further exacerbated within lower-income, minority, and immigrant communities (11–13).

Despite rising awareness of the disease of infertility and the need for increased access to care, many barriers to care remain. The most significant barrier in the United States continues to be the high cost and lack of insurance coverage for infertility treatment. Still, disparities in access persist even in states with insurance mandates (14– 16). Although more fertility centers are opening across the United States, geographic barriers to care continue to limit access to communities outside of urban cities (17–19). Underserved groups, including LGBTQIA+ individuals (20), racial/ethnic minorities (21), and immigrant communities (22), remain marginalized in our society and within healthcare. Disparities in access to care have also been reported in men with infertility, especially those with lower education level and lower income (23). Access to reproductive urologists, who specialize in testing and treating males with infertility and sexual dysfunction, may be limited for vulnerable populations and those living outside of urban areas. Of note, systematic data collection about paternal factors and their impact on reproductive outcomes is lacking. These disparities reflect shortcomings in the healthcare system as a whole, as well as systemic, structural, and individual racism (24). The purpose of this document is to outline the barriers these communities face and propose strategies to expand access to care to underserved communities (herein, this document will refer to race, ethnicity, sexual, and gender minorities as ‘‘underserved populations’’ or ‘‘minoritized’’) (25). Many factors that can marginalize patients often intersect, compounding discrepancies in access to care.

LOWER-INCOME COMMUNITIES

The cost of fertility healthcare delivery and medications in the United States is a primary, insurmountable barrier to access to such services for many individuals. Out-of-pocket costs for a medicated intrauterine insemination (IUI) cycle can range from $500 to $4,000, whereas a single cycle of in vitro fertilization (IVF) can cost $15,000–$25,000 (26). Because many patients may require more than one treatment cycle to obtain a successful outcome, the cumulative costs can be an unattainable or even an inconceivable financial burden for patients (27). In the United States, a single IVF cycle represents 50% of the annual disposable income per household, compared with approximately 20% in the United Kingdom and 12% in Japan, which reflects the overall increased cost of healthcare in the United States (28). Infertility coverage in health insurance plans is critical to lower financial barriers limiting access to care. Insurance mandates have been associated with greater utilization of infertility services and lower rates of multiple pregnancies (29–31). Patients without insurance coverage for IVF are three times more likely to discontinue treatment after a single cycle than those with insurance coverage, resulting in decreased success and further increasing disparities in IVF outcomes (32, 33).

At the time of the writing of this document, 22 US states had insurance mandates providing some level of infertility coverage, ranging from diagnostic testing alone to comprehensive fertility treatment. Even in states with insurance mandates, significant heterogeneity exists in the extent of insurance coverage, patient eligibility, exemptions, and lifetime limits (16, 34). In 2022, 36% of patients nationwide were covered by public health insurance, including Medicaid and Medicare (35). Legislative fertility insurance mandates historically have not included public health plans such as Medicaid, with few exceptions. Only Illinois and Utah currently include Medicaid coverage of fertility preservation for those at risk of medically induced infertility (34). New York (36) and the District of Columbia (37) require Medicaid to cover the most basic fertility treatments, in which doses are limited to 3 cycles of oral fertility medications but do not include either IUI or IVF coverage. Although politically challenging, advocacy for Medicaid inclusion of infertility services is important to improve equity by extending access to care to populations facing the greatest economic barriers. The inclusion of fertility services in Medicaid may better support adolescents and others facing gonadotoxic therapies for medical conditions, such as cancer, who are unable to access standard-of-care fertility preservation in a time-sensitive window.

The deprioritization of infertility as a medical condition and myths of hyperfertility among lower-income and other marginalized and vulnerable communities are grounded in stereotypes and constitute healthcare injustice (38). Although data are limited in the reproductive literature, financial toxicity (i.e., reduced quality of life related to high medical costs) increases the risk of medical debt, asset depletion, and bankruptcy (39–41). This can perpetuate the cycle of poverty in low-income patients who find it difficult to pay for or incur debt to afford fertility treatment. Patients from lower-income strata often have more difficulty obtaining external funding assistance and may turn to predatory lending agencies to help cover treatment costs (42). To date, studies are limited on the basis of the success of crowdfunding campaigns for infertility among those from lower socioeconomic strata. Although philanthropic programs that provide funding exist, they are often limited to specific populations (e.g., cancer survivors) or only cover a fraction of a treatment cycle. As a result, it may be inaccessible to many individuals, and these programs are unable to solely fulfill the unmet access needs (43).

Uninsured patients shoulder the entire costs of infertility care out of pocket. One study estimated that every 1% decrease in IVF cost results in a 3% increase in utilization (44). Yet, lowering the cost of fertility treatment in resource-constrained settings can be challenging because of the high cost of healthcare delivery in the United States. Table 1 includes strategies to improve access to fertility care in lower-income communities, using a stepwise approach to prioritize lower-cost diagnostic testing and treatment. All patients with infertility, not just minoritized patients, should be treated in an evidence-based fashion at the lowest reasonable price and avoid the use of fertility treatment adjuncts that lack evidence.

Key points

• The cost of healthcare delivery and medications in the United States is a primary barrier of access to infertility care, resulting in disproportionate access by individuals of higher socioeconomic strata.
• Lower-income patients may face financial toxicity when struggling to access infertility care, especially in the absence of healthcare benefits.
• Health professionals are encouraged to advocate for health plan coverage through Medicaid in addition to commercial and employer-based plans.
• Reproductive endocrinology and infertility (REI) clinics are encouraged to develop and expand options for lower-cost diagnostics and therapeutics where medically appropriate.
• Establishing relationships with practices serving underserved communities can be an essential gateway to expanding access to care.

RACIAL AND ETHNIC MINORITIZED POPULATIONS

Patient biologic factors, provider factors, delay in presenting for care, and higher patient dropout have contributed to poor access to care and worse outcomes from assisted reproductive technology (ART) experienced by minoritized populations (45). Minoritized patients experience infertility at the same or higher prevalence than White patients, often with less access to specialized care. A study using data from the National Survey of Family Growth from 1982 to 2002 found that non-White patients were more likely to have infertility (46). The study also found that minoritized patients were less likely to receive fertility treatment and that Black women were the most significantly impacted. More recent studies have found that although women self-report an infertility prevalence of 12.5% (21), Black and Mexican American women were less likely to seek infertility treatment compared with Asian and White women (41% and 44% vs. 65% and 80%, respectively) (21). Racial discrepancies also exist for men, where Black men seek infertility evaluation later, are older, and are less likely to have had partners who underwent fertility treatments with IUI compared with White men (47).

A higher prevalence of risk factors for infertility, such as tubal factor infertility, uterine fibroids, and diminished ovarian reserve, contribute to the burden of infertility in non-White women (48). The prevalence of sexually transmitted infections is more significant in historically underrepresented populations (49) and confers an increased risk of tubal disease. Comprehensive sexual health education is critical in this population to promote sexually transmitted infection prevention as well as equitable access to diagnostic testing and treatment. The increased incidence of uterine fibroids and tubal disease, coupled with decreased access to fertility-conserving subspecialty surgeons, further compounds the inequities noted in non-White women and lower-resource communities. The long-held view that endometriosis is a disease of middle-class, White women continues to hinder accurate and timely diagnosis in Black women, who are more likely to be misdiagnosed with pelvic inflammatory disease as the cause of pelvic pain (50, 51). A recent systematic review suggested that Black women are diagnosed with endometriosis 50% less often than White women (52). When contraception is used, Black and Hispanic women are more likely to undergo sterilization and less likely to use reversible hormonal contraception, including longacting reversible contraceptives (53, 54). Black women with an ectopic pregnancy are less likely to undergo tubal conserving surgery compared with White women (55). At the public health level, addressing knowledge deficits and improving access to comprehensive reproductive care are crucial to curbing these predisposing factors for racial and ethnic minoritized disparities in infertility.

Black women are more likely to be older, have a longer history of infertility before seeking care, and have a diagnosis of diminished ovarian reserve compared with White women undergoing fertility treatment (56), which is likely related to a documented delay in initiating fertility care by at least 1 year (57). Delays in presentation exist even in states with mandated coverage for infertility, highlighting that although insurance coverage for infertility care may address some of the barriers to fertility treatment utilization, it does not eliminate all access issues (58, 59).

Long-standing medical mistrust, rooted in unethical research practices and federal policies, has significantly impacted access to reproductive health services for Black men and other men of color. Most notably, the Tuskegee Syphilis Study, a research program by the US Public Health Service from 1932 to 1972, withheld treatment from hundreds of Black men, even after acceptable treatments had become available (60). This infamous study has served as the basis for lasting medical mistrust among Black patients, particularly in reproductive and sexual health. Although the Tuskegee study is widely recognized as a cause of mistrust, the history of medical and research abuse of African Americans goes well beyond Tuskegee (61). Sterilization programs in the United States were legal in 32 states in the 20th century, targeting Blacks and other minority groups without their consent (62). These historical examples continue to affect some patients’ decisions on when and how to seek medical care today.

Several studies have reported a lack of provider comfort and culturally competent care as hindrances for women of color when seeking fertility treatment (59, 63). Healthcare providers may hold biases and assumptions about the risk for infertility in women from historically marginalized populations and, thus, may show delay or deny referrals for women to fertility treatment (64). Some studies further suggest that minoritized patients have worse reproductive outcomes after fertility treatment. Black women experience lower rates of pregnancy and live births, as well as higher rates of miscarriage after ART treatment when compared with White women (65). Black women have been shown to obtain fewer oocytes, have lower blastocyst development, and have higher rates of cycle cancellation (66). Black donor oocyte recipients are less likely to experience pregnancy and live birth compared with White recipients (67, 68).

Connecting causal factors, whether social, cultural, biologic, or structurally determined, is essential to understanding and ultimately alleviating factors driving racial, minoritized disparities in infertility prevalence and treatment outcomes. Attention should be given to dismantling systems that perpetuate disparities in these historically marginalized communities. Table 2 shows the proposed methods to reduce implicit bias.

Key points

• There are significant racial and minoritized disparities in the prevalence of infertility, access to fertility treatment, and fertility treatment outcomes.
• Providing continued education for both patients and providers is necessary to combat healthcare disparities.
• Fertility-sparing surgery and reversible contraception should be prioritized as options.
• Advocacy efforts should support and be inclusive of improved access to care for marginalized groups, including racial and ethnic minoritized patients.

IMMIGRANT POPULATIONS

Immigrants who came to live in the United States from another country make up 14.3% of the US population (69). Immigrants have unique language, cultural, and educational differences compared with patients born in the United States. Immigrants are not a homogeneous culture, coming from all areas of the world (70).

Only 54% of immigrants report English proficiency, making navigating websites, patient-facing education, and testing and treatment instructions difficult. Immigrants may have lower education levels, with an estimated 25% not having completed high school (69) and many not having received formal sexual and contraceptive education (71). Prior studies have found that immigrant patients have less knowledge of the infertility disease process and treatment compared with patients in higher-resourced settings (72, 73). Cultural differences can also prevent patients from accessing care, especially given the importance of childbearing in many cultures and the stigmatization of infertility (74, 75).

An estimated 23% of US immigrants (11.0 million people) are unauthorized immigrants (69). Deportation is a constant threat for some undocumented patients (76, 77), which may further limit access to healthcare. Undocumented workers are less likely than US-born citizens to have health insurance (78). Even in states with fertility insurance mandates, undocumented immigrants may be unable to access care (79).

Immigrant populations also face unique cultural and clinical considerations. Infertility is more likely to be secondary to anovulation and tubal factor disease among immigrants (80). Immigrant women from tuberculosis-endemic countries have an increased risk of urogenital tuberculosis (81, 82), which is associated with uterine and tubal factor infertility. Furthermore, despite international guidelines defining forced sterilization as an act of violence and a crime against humanity, this practice persists in numerous countries around the world (83, 84). The premigration and postmigration experiences of the immigrant patient can result in cumulative trauma, which can have significant impacts on fertility and health (85). Incorporation of trauma-informed reproductive healthcare is, thus, imperative when providing care to this group (86).

Clinicians treating immigrant patients should develop tools to help overcome these barriers (Table 3) (87). The most significant challenge for many patients is a language barrier, which can be mitigated via interpretation services. Even if the clinician can speak the patient’s native language, there are often idiomatic nuances that benefit from the presence of a licensed medical interpreter (22). Given the limited availability of in-person interpreter services, many hospital systems incorporate interpretation services via remote video with the ability to access >100 languages.

Professional associations can play a role by developing patient education materials in multiple languages; for example, ASRM has fact sheets and information booklets in Spanish and Mandarin (88). Reproductive endocrinology and infertility physicians can expand outreach to marginalized immigrant communities by partnering with neighborhood health clinics, which have often laid the groundwork for community engagement and outreach. Reproductive endocrinology and infertility physicians can offer community providers educational sessions, discussing initial fertility evaluation and referral pathways to care.

Key points

• Patients who are immigrants face cultural, language, socioeconomic, and geographic barriers to fertility services.
• Employing culturally sensitive, patient-centered care and integration of medical interpreter services are potential tools to overcome these barriers.
• Expanding access to care can be encouraged through the development of sites of clinical care and partnerships with community healthcare.

SEXUAL AND GENDER MINORITIES

Sexual and gender-minoritized (SGM) patients are underrepresented in national studies of health outcomes (89). However, SGM individuals have unique health needs, and significant disparities in fertility care exist for this minority population (89). Sexual and gender-minoritized is a term used to reflect the increasing diversity of gender and sexual orientation and is characterized by nonbinary constructs of gender identity and sexual preference (89). Sexual and gender-minoritized individuals include, but are not limited to, those who identify as LGBTQIA+ (90). A significant challenge in addressing disparities in care access is the heterogeneity of the SGM group. However, common themes in systemic discriminatory barriers to family-building exist (Table 4).

Financial barriers to fertility care disproportionately impact SGM patients. State insurance mandates for fertility treatment are most used by cisgender heterosexual couples because some definitions of infertility rely on 6–12 months of unprotected intercourse. Such policies exclude those that require donor gametes or gestational carriers for conception (including both same-sex male and female couples). Because many SGM patients require third-party reproduction for family-building, cost considerations disproportionately influence whether SGM patients eventually seek treatment. Only 9.4% of same-sex male relationships have insurance coverage for any costs associated with ART or surrogacy (91). The definition of infertility from ASRM in 2023 was expanded to include minoritized patients (4).

Beyond economic hurdles, SGM patients can face significant legal and geopolitical barriers. The debate around the legal definition of parenthood is a pressing concern for most LGBTQIA+ intended parents. Differences in laws between states about legal custody are expected within the context of nontraditional family structures. Transgender patients endure complex legal issues, including legal recognition of their gender, as well as child custody concerns (92). A majority of federal and state civil rights laws do not include express protections against discrimination on the basis of gender identity or transgender status (92).

Cultural and social barriers to care for SGM patients are also ubiquitous. Social acceptance of SGM patients as parents is not universal (93). Sexual and gender-minoritized patients can experience social isolation from their families when announcing their plan for family-building (93). Sexual and gender-minoritized patients can also face social stigmatization that their children will identify as a gender or sexual minority (93). Sexual and gender-minoritized patients may experience personal biases related to their right to have children, which may derive from their life experiences or from having negative views about their own gender or sexual expression (94).

Physicians providing care to SGM patients should implement strategies within their clinics to improve awareness of and sensitivity to institutional barriers to fertility care (95). Inclusive language and intake should be standardized because the patient experience can be potentially impacted at numerous touchpoints (e.g., clinic website, phone operator, front desk, medical assistants, phlebotomists, and financial team). Encouraging diversity and inclusion training for all staff members can help to normalize patient encounters and create a gender-neutral environment. Staff training for SGM sensitivity is offered through the Human Rights Campaign (96), Family Equality (97), and similar organizations.

Gender-neutral signage and physical displays of support can create a welcoming setting for clinical care. Clinics can adjust gendered language on written material (i.e., forms for intake, consents, and financial paperwork), standardize fees protocols to resolve SGM insurance issues, and promote SGM visibility through marketing advertisements. Sexual and gender-minoritized patients may require care with other specialties, and fertility specialists can help facilitate chains of referral to SGM-friendly providers. Clinicians can help promote community outreach for SGM patients by partnering with local LGBTQIA+ clinics that comprehensively address the health needs of SGM patients in a welcoming manner.

Key points

• Sexual and gender-minoritized patients are disproportionately affected by financial, legal, and geopolitical barriers
• Healthcare professionals should develop strategies for SGM inclusion through marketing, implementing staff sensitivity training, and creating a welcoming clinic infrastructure
• Healthcare professionals can collaborate with SGM-friendly providers, local LGBTQIA+ healthcare clinics, and LGBTQIA+ community leaders to help reduce barriers to fertility care and inform local advocacy efforts

RURAL/UNDERSERVED GEOGRAPHIC AREAS

Rural individuals experience poorer health outcomes and generally have decreased access to healthcare providers than urban women across a variety of domains in reproductive health (98). Close to 30% of the US population live in an area without access to an ART clinic. Less than one half of reproductive-aged women residing in rural areas have perinatal services within a 30-minute drive (98, 99). In a prospective cohort study by Wu et al. (100), the average time spent on fertility care was 125 hours over 18 months, demonstrating the significant cost and time burden diagnosis and treatment can entail. As observed in other areas of medicine, geographic location is a predictor of access to infertility evaluation as well as utilization of fertility treatment (5).

Several interventions have been proposed to narrow geographic disparities in access to care, with the implementation of telemedicine services receiving the most attention. At the height of the COVID-19 pandemic, ASRM recommended shifting from an office-based practice to a telehealth model to minimize virus exposure to healthcare personnel and patients (101). Data have demonstrated that outpatient primary care visits can and have been managed effectively through telemedicine without compromising patient health or quality of care (102, 103). Similar findings have been shown in reproductive medicine before and after the COVID-19 pandemic. In Georgia, patients who underwent ART between 2015 and 2018 with a 3-hour average commute were surveyed regarding their satisfaction with telehealth services, with the majority reporting high satisfaction levels with no difference in ART treatment outcomes (104). Although this finding has been replicated in some studies (105), others have identified higher satisfaction rates (83% vs. 70%) for in-person visits despite the widespread adoption of telehealth appointments in the aftermath of the pandemic (106). Multiple studies have explored patient-centered variables and shown that respondents felt that the telehealth system was comparable to in-person visits (104, 107). Telemedicine options for some appointments provide a unique opportunity to address geographic barriers and may also narrow other disparities while maintaining similar treatment success rates (104, 108, 109).

Some centers use resident or fellow-led clinics to provide fertility care to medically underserved populations (48). Although these centers are disproportionately located along the US coastal regions, multiple programs have shown that ovulation induction, IUI, and IVF can be performed successfully in a low-resourced setting (110, 111). Within the private sector, which may not be affiliated with a training program, the creation of satellite clinics could expand access in areas with few clinics per state or rural communities. McGarity et al. (17) found that less than a quarter (22%) of ART satellite clinics expanded geographic access to ART services by establishing care in an area without an existing clinic. Most practices with satellite clinics position their satellite clinics close to another practice’s leading clinic, suggesting that satellite clinics are sometimes placed to compete for patients in proven markets (17). Access could be expanded by shifting the underlying archetype of satellite clinics to service areas without existing care.

Key points

• Strategies to increase access to care include the following:
  • Telemedicine service
  • Satellite clinics in areas without existing clinics
• Strategies to increase the workforce of providers include the following:
  • Reproductive endocrinology and infertility training programs focusing on recruiting and retaining providers committed to serving marginalized and rural populations
  • Increasing exposure to non-ART REI during generalist obstetrics-gynecology residency training, family medicine, primary care, and rural medicine training programs
  • Collaboration with physician extenders and ultrasonographers with REI physician oversight

CONCLUSION

The field of reproductive medicine faces continued challenges to overcome disparities and inequities in access to adequate care (112). In this backdrop, the past decade has seen significant transformative change toward addressing these challenges, beginning with the Access to Care Initiative by ASRM launched in 2015 (5), passage of insurance mandates by multiple states (34), renewed attention by global health organizations on the burden of infertility (113, 114), and, notably, the commitment of health professionals in everyday settings to make a difference for their patients. This work is not complete because significant disparities exist today. Lack of access to care is not caused by one single factor for all individuals, and systematic efforts are needed to reduce inequities in access to care for all patients needing fertility services.

Acknowledgments

This report was developed under the direction of the Practice Committee of the American Society for Reproductive Medicine (ASRM) as a service to its members and other practicing clinicians. Although this document reflects appropriate management of a problem encountered in the practice of reproductive medicine, it is not intended to be the only approved standard of practice or to dictate an exclusive course of treatment. Other plans of management may be appropriate, taking into account the needs of the individual patient, available resources, and institutional or clinical practice limitations. The Practice Committee and the Board of Directors of the ASRM have approved this report. This document was reviewed by ASRM members, and their input was considered in the preparation of the final document. The following members of the ASRM Practice Committee participated in the development of this document: Clarisa Gracia, M.D., M.S.C.E.; Rebecca Flyckt, M.D.; Madeline Brooks, B. S.; Micah Hill, D.O.; Tarun Jain, M.D.; Denny Sakkas, Ph. D.; Bruce Pier, M.D.; Anne Steiner, M.D., M.P.H.; Jake Anderson; Cigdem Tanrikut, M.D.; Belinda Yauger, M.D.; Karl Hansen, M.D., Ph.D.; Suleena Kalra, M.D., M.S.C.E.; Robert Brannigan, M.D.; Elizabeth Ginsburg, M.D.; Jared Robins, M.D.; Chevis Shannon, Dr.PH., M.B.A., M.P.H.; and Jessica Goldstein, R.N. The Practice Committee acknowledges the special contributions of Benjamin Peipert, M.D.; Denise Asafu-Adjei, M.D., M.P.H.; Tolulope Bakare, M.D.; Jacob Christ, M.D.; Heather Hipp, M.D.; Tia Jackson-Bey, M.D., M.P.H.; Quinton Katler, M.D., M.S.; Holly Mehr, M.D., M. Ed.; Jerrine Morris, M.D., M.P.H.; and Michelle Vu, M.D., in the preparation of this document. All Committee members disclosed commercial and financial relationships with manufacturers or distributors of goods or services used to treat patients. Members of the Committee who were found to have conflicts of interest on the basis of the relationships disclosed did not participate in the discussion or development of the document.

Declaration of Interests

Practice Committee of the American Society for Reproductive Medicine has nothing to disclose.

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