IVF is Cost-Prohibitive for Far Too Many Black & Brown Families-These Orgs Are Changing That
Birth rates are declining due to increased infertility—but most people who get access to IVF are white. To what extent is cost preventing Black and brown parents from seeking fertility treatment?
The number of babies born in America hit the lowest level in over 30 years in 2019, according to the CDC. Also according to CDC data, one in eight couples are impacted by infertility (12% of married women and 7.3 million Americans), which is medically defined as the inability to conceive after a year of unprotected vaginal sex. And as became common knowledge during National Infertility Awareness Week this past April, infertility is a leading cause of that decreasing U.S. birthrate.
The statistics on the racial disparities of women seeking IVF treatment are stark. According to CDC data, White women between age 25 and 44 were almost twice as likely (15%) as Black women (8%) or Hispanic women (7.6%) to have used fertility services to get pregnant. And yet Black women experience longer periods of infertility by the time they see their doctor (4.3 years) when compared with white women (3.3 years). To compound the issue, after IVF, Black women have a higher risk of miscarriage and a lower live birth rate.
But to what extent is straight-up cost preventing diversity among women seeking IVF? A 2014 CDC report showed that infertility service users were more likely to be married, white, older, educated, and affluent. Costs-and a lack of adequate health insurance-were attributed as the cause.
Michele Bratcher Goodwin is a professor at the University of California Irvine School of Law Center and the founding director of the Center for Biotechnology & Global Health Policy. She's also the host of Ms. Magazine's On the Issues with Michele Goodwin podcast and the author of Baby Markets: Money and the Politics of Creating Families.
Goodwin tells Parents that "IVF costs are deeply prohibitive generally. The high costs are particularly difficult for families of color and single individuals who disproportionately lack intergenerational wealth. Where others who want to use IVF-related services may be able to access financial reserves-either their own or from family members-those types of options may be less available to families of color. " She adds that Dr. Joia Crear Perry, founder and president of the National Birth Equity Collaborative, is currently at work on these issues; Perry has called for a White House Office of Sexual and Reproductive Health and Wellbeing.
"Infertility is pronounced in communities of color," Goodwin continues. "African-American women experience infertility at rates similar to and higher than white counterparts. The desire to parent does not have a color line, and Black parents-for example-would be just as likely to seek medical assistance to achieve pregnancy as white counterparts. That said, if assisted reproductive technologies are outside of reach, because of economic constraints, then Black families may be less likely to have meaningful access."
IVF is primarily a privately funded fee-for-service model. The average cost of an IVF cycle in America is $10-15,000. Medication can increase costs to $25,000 per cycle, and to exacerbate this, most IVF centers require immediate full payment. The CDC estimates that 13% of women who use fertility treatments live in poverty. This stat, in turn, supports the research that shows those who benefit from IVF are primarily white; after all, according to the 2019 Census Bureau figures, median income was $76,057 for white households, versus $45,438 for Black households. In addition, Black and Brown families face systemic racism, which can further reduce financial options-including insurance.
Only 14 states (Arkansas, California, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, Texas and West Virginia) have laws that require health insurers to cover or offer to cover some form of infertility diagnosis and treatment. Maryland, Louisiana and New York require providers to cover some of the cost; some states subsidize it for low-income families only.
Many health plans, however, exclude IVF from coverage entirely. To complicate matters, state mandates don't apply to those who obtain coverage through Medicaid, or obtain their insurance from self-insured employers.
The plus side of this huge gap in coverage is that a number of fertility benefit providers have emerged to assist employees with IVF costs. Carrot Fertility (founded by Tammy Sun, Dr. Asima Ahmad, and Julie Insinger), for example, provides financial, medical, and emotional support throughout fertility treatment-reducing healthcare costs and resulting in better clinical outcomes. Carrot's program includes: egg freezing, IVF, donor and gestational carrier services, and adoption; Carrot Rx, a premium pharmacy experience, at significant savings; Carrot Pregnancy; and the Carrot Card, a flexible fertility benefits debit card for paying the costs of care.
Advocating for reproductive justice
The American Society for Reproductive Medicine (ASRM) declared the lack of access to fertility treatment in the United States a reproductive justice issue. Which is why ASRM is prioritizing inequities in reproductive care and has affirmed that creation of a family is a basic human right; equal access to infertility care remains the organization's goal. ASRM also launched a Task Force on diversity, equity and inclusion in 2020; its stated aim is to "reduce and eventually eliminate health disparities in access and outcomes to reproductive care."
The Black Lives Matter movement and the pandemic have also shined a spotlight on racial disparities in healthcare. In April 2021, President Biden cited the impact of the Affordable Care Act, which led to Black uninsured rates dramatically declining. He also highlighted a persistent health insurance coverage gap between Black and white Americans, which fell by more than 40% in the wake of the Act.
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Help is at hand
Several minority-owned infertility support organizations have emerged to address such healthcare injustices and are making IVF an option for all through funding and education.
- Dr. Jason Hammond and Dr. Camille Hammond launched The Tinina Q Cade Foundation in 2005 to provide information and financial assistance. It provides grants to help with the costs of adoption and fertility treatment. To date, the Cade Foundation has financially supported 121 families nationwide, resulting in the birth of 89 babies.
- The Sister Girl Foundation aims to provide awareness, education, support and advocacy to women. It also tries to bridge the gap between patients and healthcare providers.
- Rev. Regina Townsend founded the Broken Brown Egg (BBE) after her 10-year journey with infertility and successful IVF treatment. With BBE, she encourages reproductive health conversations with the African American community. Her Facebook group has 584 members. In 2020, BBE partnered with Kindbody to provide grants for fertility treatments to women of color.
- Founded in 2009, Fertility for Colored Girls (FFCG) is an infertility advocacy blog and source of community. Due to the pandemic, FFCG suspended their 2020 Gift of Hope Award grant but hopes to accept applications in 2021 to provide more than $10,000 to infertile families who qualify. The annual award relies on the success of fundraising efforts.
Why problems persist post-payment
Of course, uncertainty of funding is not the only obstacle towards affording IVF. According to the ASRM Ethics committee, non-economic barriers to IVF are cultural and societal. Communication differences, for example, can make medical instructions inaccessible. Cultural stigmas (such as the fear of being labeled "infertile"), preferences for privacy, and prior bad medical experiences can be prohibitive. Also, patients must spend time away from work and be able to travel some distance to clinics. Some women of color have reported that their own doctors made assumptions about their (in)ability to pay for treatment.
Still, decreasing disparity may be achieved through education and policy: IVF simply needs to be rebranded-with a cross-cultural communications-based media kit.
What it means to be seen
A spokesperson for Carrot tells Parents that "there are major healthcare disparities for Black, Indigenous, and People of Color (BIPOC)," in fertility treatment as well as overall. "Research shows that sharing a racial or cultural background with one's physician can lead to higher patient satisfaction, better adherence to medications, and better health outcomes. As part of our commitment to inclusion and increasing the representation of BIPOC in fertility care, Carrot has a feature that gives American members the ability to request to be matched with a BIPOC provider. Today, 27% of Carrot providers are BIPOC."
Then there's the strange, ongoing myth that Black women are naturally super-fertile. Stereotypes like this may explain why IVF advertisements are often solely targeted at white families, especially since the industry relies on professional referrals and often lacks inclusive marketing.
Thankfully, women are challenging these misperceptions-using social media, for one thing. Kelle Stewart's Warrior Wednesdays uses Instagram to tell Black women's stories of infertility. Playwright Sonhara Eastman dramatizes infertility on YouTube with her Black Girls Guide To Fertility web series-and a podcast of the same name. Sistahs Surviving Infertility launched in 2020 as a private online support group dedicated to Black women living with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, which contributes to infertility.
There's also the Infertilidad Latina Podcast, founded in 2020 by Audrey Quinones, Jasmine Higgins, and Blanca Tellez, which discusses infertility issues in the Latinx community and releases resources in Spanish. Quinones tells Parents that the podcast's "impact has been huge; more and more Latina and Hispanic women are sharing their stories with us. They say how happy and relieved they are to find other women who look like them, who speak their language or share their culture going through similar experiences-how they no longer feel alone. They are listening to the podcast and thus asking their doctors more educated questions and advocating."
Plenty of celebs-from Michelle Obama to Chrissy Teigen-have also recently used their platforms to talk infertility and decrease stigma surrounding assisted reproductive technology. Such conversations open a much-needed dialogue. But, we also need to talk about the data.
Making the most of diversity data
In April 2021, President Biden suggested hope was on the horizon: "A person's race should never determine their health outcomes…The Biden-Harris Administration is committed to addressing these unacceptable disparities, and to building a health care system that delivers equity and dignity to Black, Indigenous, and other women and girls of color."
He continued by noting that racism is behind this inequity in healthcare, and that "our nation must root out systemic racism everywhere it exists, including by addressing unequal social determinants of health that often contribute to racial disparities." And, last but not least, Biden noted that the "U.S. must also grow and diversify the perinatal workforce, improve how we collect data…and invest in community-based organizations to help reduce the glaring racial and ethnic disparities that persist in our health care system."
As Infertility Advocacy Day approaches on June 17, let's invest in said community-based organizations-and hope that racial equity in fertility care is not far behind.