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April 24-May 1 is National Infertility Awareness Week and the National Birth Equity Collaborative (NBEC) and the Center for Reproductive Rights (CRR) are joining efforts to highlight how infertility and access to fertility care are a reproductive justice issue.

Millions of people struggle with infertility in the United States and face numerous barriers to accessing needed fertility care – from stigma to high out-of-pocket costs to discriminatory laws and policies. Notably, Black women are nearly twice as likely to experience infertility than non-Hispanic white women yet are less likely to access needed fertility care. Single and LGBTQ people, who need access to fertility care to build their family, are often unable to access it even when they have insurance coverage. And for uninsured people, the high out-of-pocket costs of fertility care are prohibitively expensive.

Inequities in our healthcare system foreground all of this and, together, leave disproportionately impacted communities, and especially people who face intersecting layers of discrimination, feeling excluded from the conversation around infertility and access to care, isolated in their experience, and ultimately unable to access the fertility care they need.

    

Infertility and access to fertility care is a human rights and reproductive justice issue.

Infertility and access to fertility care implicate core human rights—including the rights to health, including sexual and reproductive health, reproductive and bodily autonomy, equality and non-discrimination, and benefit from scientific progress. Reproductive justice, a framework developed by Black women advocates in 1994, likewise recognizes a person’s human right to personal bodily autonomy and to not have a child, to have a child, and to parent the children they have in a safe and sustainable community. Infertility and access to fertility care strike at the heart of a person’s ability to exercise their bodily and reproductive autonomy – to make decisions about their reproductive and family life. 

 

What is infertility?

Infertility is defined as the inability to conceive after 12 months of unprotected vaginal intercourse. However, in this context, if the female partner is over age 35, the parameters shorten to six months. Approximately 12 percent of women of reproductive age in the United States have difficulty getting pregnant or carrying a pregnancy to term. Deeply entrenched racial and ethnic disparities in health disproportionately impact Black women, including in their rates of infertility and access to care. Black women are nearly two times more likely than their non-Hispanic white counterparts to experience infertility, but only half as likely to receive treatment. Research has shown, additionally,  that even when care is accessed, fertility treatment like in vitro fertilization (IVF) has poorer success rates in Black women as compared to their non-Hispanic white counterparts.

 

What are Black women’s unique fertility needs?

The myth suggesting that Black women are hyper-fertile is intricately linked to the stereotype of Black hypersexuality and promiscuity, both of which are deeply rooted in racism and misogyny, also known as misogynoir. These long standing, harmful stigmas and obsessions with Black women’s sexuality and ability to reproduce have been bolstered by media representations that depict Black women as one-dimensional caricatures obsessed with sex, which have, in turn, been immortalized in discriminatory public policy. The interplay of systems of oppression faced by women of color, specifically Black women, have resulted in an increased sense of mistrust of the medicalized healthcare community, particularly within sexual and reproductive health. This sentiment is due to the long and painful history of eugenics and systemic manipulation in Black communities. 

We know that environmental stressors such as racism, social stereotypes, and financial burden play a significant role in the ability to carry and sustain a pregnancy to term. For Black women trying to become pregnant, they must also consider other contributing factors like polycystic ovary syndrome (PCOS), endometriosis, hypertension, diabetes, and uterine fibroids, which impact 80 percent of Black women in the United States. In seeking fertility care, many Black women prefer to be treated by culturally concordant providers who might have a better understanding of their specific health history and experiences. There is limited recent data available regarding the number of providers trained in the subspecialty of reproductive endocrinology and infertility (REI). However, according to a 2014 survey, there were only 1,300 American Board of Gynecology (ABOG) certified REI specialists nationwide. Unsurprisingly, the number of Black REIs is substantially smaller and account for approximately three percent of all certified REIs. The lack of representation reflected in this subspecialty is mirrored in the broader field of obstetrics and gynecology as well, making it challenging for patients of color to receive care from physicians who understand their life experiences on a personal level. 

The issue of cultural concordance also arises in the search for Black sperm and egg donors. Unfortunately, there have been Black sperm and egg donor shortages since the 1980’s, and the COVID-19 pandemic has only exacerbated these disparities due to restrictions on recruitment methods. Even at the nation’s largest sperm bank, there are alarmingly low numbers of Black and other donors of color.  

 

Barriers to accessing fertility care

Currently, 19 states have some sort of mandate requiring insurance carriers to provide or offer coverage for fertility care ranging from diagnosis to treatment, including (IVF). Unfortunately, infertility’s definition is often incorporated into these mandates and insurance carriers can and often do use it to require single people and LGBTQ couples to first prove that they have unsuccessfully tried to become pregnant for six or 12 months, depending on their age. This often translates into single and LGBTQ people having to pay out-of-pocket to undergo six to 12 cycles of intrauterine insemination (IUI) before receiving a diagnosis of infertility and finally getting coverage to try other forms of care like IVF. 

Military servicemembers and veterans face similar barriers. Under TRICARE, for example, to be eligible for insurance coverage a servicemember must fall under certain criteria:

  1. Be on active duty
  2. Have experienced a serious illness or injury while on active duty
  3. Have lost their reproductive ability due to that illness or injury
  4. Be able to provide their own genetic material to produce a pregnancy
  5. Have a lawful spouse who can also provide their own genetic material. These eligibility requirements are mirrored in the Veterans Health Administration and keep many in the military from accessing the fertility care they need to build their family.

And what about Medicaid? With very few exceptions, Medicaid doesn’t cover fertility care leaving its nearly 75 million beneficiaries, a majority of whom identify as Black, Hispanic, Asian American or another non-white race or ethnicity, with few options to access care except to pay for it out-of-pocket. Without insurance, a single IUI can cost between $150-4,000 depending on whether it includes hormone treatment while a single cycle of IVF can cost upwards of $20,000.  

 

Infertility’s impacts on mental health 

Infertility is often cloaked in stigma and goes unspoken, even in our own families. It also undermines the societal expectation that women are innately born to bear children and become loving mothers. Any deviation from this norm, whether intentional or not, may not only engender societal stigma or personal shame, but also lead to societal isolation and result in high levels of anxiety and depression.

Studies have found that women impacted by infertility can feel as anxious or depressed as those diagnosed with cancer or those recovering from serious health issues, like a heart attack. Psychologists, too, are seeing an increase in patients dealing with the mental trauma of infertility and pregnancy loss, which some characterize as an “invisible loss” because of the stigma and silence surrounding the inability to become pregnant or carry a pregnancy to term.

 

Recommended policy solutions to address inequities in accessing fertility care

National Birth Equity Coalition (NBEC) and theCenter for Reproductive Rights (CRR) share the goal of expanding the conversation around the disproportionate impact of infertility and limited access to fertility care on communities of color, especially Black families and others that experience multiple forms of discrimination. We also think it’s critical to recognize that infertility does not exist in a silo. A person can struggle to become pregnant and need access to fertility care, can be pregnant and need access to dignified maternal health care, can be pregnant and need access to abortion, and can suffer a pregnancy loss and need access to prenatal, birth, and postpartum care. Recognizing this, we offer these policy solutions to promote access to the full spectrum of sexual and reproductive health care, including fertility care, for everyone without discrimination:

  • Ensure equitable access to primary health care services by expanding Medicaid nationwide. As of 2022, 39 states and D.C. have adopted the Medicaid expansion. The hold out 12 states are mostly concentrated in the South leaving millions of people with health insurance.
  • Enact a national fertility care mandate that requires health plans to provide insurance coverage for infertility diagnosis, treatment (including IUI and IVF), and necessary medication that may be required for treatments, which is often an overlooked, costly barrier to care. The mandate should include Medicaid, the Federal Employee Health Benefits (FEHB) program, TRICARE, and the Veterans Health Administration (VA).
  • Remove insurance restrictions or limitations on fertility treatment coverage for single and LGBTQ people. Single and LGBTQ couples should not be required to exhaust their financial resources on less successful methods of assisted reproduction to meet a heteronormative definition of infertility and only then become eligible for coverage.  
  • Increase funding for infertility research. Including disaggregated data by race. This funding stream and subsequent research could be housed by the proposed White House Office of Sexual and Reproductive Health and Wellbeing, which aims to lead joint interagency planning for the Federal Government’s integrated response to attacks on sexual and reproductive wellness and campaigns of significant consequence. 

Everyone deserves the right of reproductive self-determination and an equitable pathway to parenthood. If you’re looking for information, support resources, or grants to help you access fertility care today, please visit:

https://sistersinloss.com/

https://cadefoundation.org/new/

https://www.fertilityforcoloredgirls.org/

https://thebrokenbrownegg.org/

https://www.sister-girl.org/

https://rsphealth.org/ 

 

RELATED CONTENT: ’People Ask Me Every Day Why I Don’t Have Kids: Adrienne Houghton On ‘Hurtful’ Questions She Gets Amid Fertility Struggles

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