Disparities in Fertility
How can we improve access and equity in the fertility space for underserved populations?
I feel like I’m running out of time and I’m not doing anything right
Why do you feel that way?
I never thought I’d be in this position where I’d feel so much pressure in terms of how and when I can have a child of my own. I just wish I had heard that there were other ways to improve my chances of becoming pregnant earlier.
Voiced by a 39-year-old patient who admitted she had never had a gynecologist before coming to our resident-run clinic, these conversations were a sampling of the palpable anxiety that I heard and felt during my OB/GYN rotation - listening to vulnerable stories of infertility, and longing for motherhood. Our resident-run clinic primarily served patients of color who came to our doors often as a last desperate attempt after years of disappointment and falling through the gaps of other time-strapped providers in the community.
One of the many things I learned over the course of this rotation is that there are many reasons for infertility that are beyond our patients’ control and ultimately treatable. Between endocrine disorders, structural abnormalities, tubal inflammation, or even intrauterine scarring from past procedures (Asherman’s syndrome), there are many tools (Assisted Reproductive Technologies ARTs) that gynecologists can use to support patient fertility goals.
Despite the wide array of tools, there are wide disparities that exist in terms of access and coverage of these treatments. In a national study done in 2005, they found that 7.6% of Hispanic women ages 25-44 have sought medical help to get pregnant compared to 15% of White women. Even when insurance access was normalized through employer-sponsored IVF coverage, the absolute rate of increase in IVF among Hispanic women was 27.5% (p=.25) compared to an increase of 64.9% among White women (p<.001) source.
Part of the challenges in this space go beyond socioeconomic factors because fertility is so intertwined with cultural values and societal factors that define a woman’s role. Because of this, conversations around infertility often involve overtones of secrecy, feelings of shame, doubt and even sometimes guilt.
A broad array of reasons exist that may explain a couple’s infertility that range from structural barriers (fibrosis, polyps, fibroids), hormonal (PCOS, ovulation dysfunction), or even outside factors (drugs, environmental toxins, STIs). Most guidelines cover fertility workup only after a year of failure trying to conceive if the patient is under 35 and then after 6 months of failure if the patient is 35 or older. This is because aging has been well-studied to introduce complications in fertility and pregnancy.
Depending on the root cause of infertility through lab testing (assessing for hormonal abnormalities in the hypothalamic–pituitary–gonadal axis), imaging (pelvic ultrasound to assess for PCOS and structural barriers to conception, hysterosalpingogram to assess patency of fallopian tubes) we can prioritize different treatments. These range from medical interventions that can stimulate ovulation, to surgical interventions to remove structural barriers to conception. However, for the rest of this post I will focus primarily on assistive reproductive technologies (ARTs) that increase likelihood of fertility.
ARTs all broadly bypass the process of sexual intercourse to stimulate fertilization of the oocyte in a laboratory environment. In the US, CDC defines ARTs to include “all fertility treatments in which both eggs and sperm are handled. In general, ART procedures involve surgically removing eggs from a woman's ovaries, combining them with sperm in the laboratory, and returning them to the woman's body or donating them to another woman." More colloquially, ARTs consist of in vitro fertilization (IVF), Intracytoplasmic sperm injection (ICSI), and cryopreservation of gametes or embryos “freezing eggs”.
IVF Coverage and Utilization
When it comes to seeking fertility services, patients are predominantly white, wealthy, and privately insured. An analysis of National Survey of Family Growth (NSFG) data found that among women who reported using medical services to help become pregnant, similar shares of Black (69%), Hispanic (70%) and White (75%) women received fertility advice. However, less than half (47%) of Black and Hispanic women who used medical services to become pregnant reported receiving infertility testing, compared to 62% of White women, and even fewer women of color received treatment services.
On average, more Black, Hispanic, and AI/AN people live below the federal poverty level than people who are White or of Asian/Pacific Islander descent. The high cost and limited coverage of infertility services make this care inaccessible to many people of color who may desire fertility preservation, but are unable to afford it - even after factoring insurance coverage, fertility therapy typically cost patients thousands of dollars.
LGBTQ Patients and Single Parents
LGBTQ people face heightened barriers to fertility care, and discrimination based on their gender identity or sexual orientation. Section 1557 of the Affordable Care Act (ACA) prohibits discrimination in the health care sector based on sex, but the Trump Administration has eliminated these protections through regulatory changes. Without these explicit protections, LGBTQ patients may be denied fertility care on a state-by-state basis. Especially for LGBTQ patients that have received gender affirming surgery, limitations in their state may preclude them from qualifying for fertility treatment because infertility that is secondary to surgeries that affect fertility may not fall into the state’s definition of infertility. Furthermore, certain states (e.g., Arkansas, Hawaii and Texas and at the VA) IVF services must use the couple’s own eggs and sperm (rather than a donor), effectively excluding same sex couples.
Single persons are also often excluded from access to infertility treatment. For example, IVF laws cited above that require the couple’s own sperm and egg, effectively exclude single individuals too, as they cannot use donors.
Policy Barriers and Provider Biases
Thanks to work led by Dr. Tarun Jain, we now know that “comprehensive state mandated insurance coverage for in vitro fertilization services is associated with greater utilization of these services.” His team found that IVF utilization in states with comprehensive mandates was 132% higher than in noncomprehensive states after age adjustment.
In 2021, American Society for Reproductive Medicine (ASRM) released a committee opinion that states that fertility programs should offer services without discrimination based on gender identity or marital status. However, implementation and adoption of these opinions from a policy perspective are largely stalled. At the federal level, the proposed Access to Infertility Treatment and Care Act would require all health plans offered on group and individual markets (including Medicaid, EHBP, TRICARE, VA) to provide infertility treatment - but has never made it out of committee. Currently, NY continues to be the first and only state Medicaid program to cover any fertility treatment.
As Dr. Tia Jackson-Bey and her colleagues from the ASRM Diversity, Equity, and inclusion task-force thoughtfully remark in this opinion piece:
Unequal utilization of fertility care involves more than merely differences in insurance and socioeconomic status. We must reconcile how systematic racism and unconscious biases, both of which inform our interactions with individuals and whole populations of people, contribute to the current health inequities observed.
Innovation in Fertility Access
With my venture hat on, I have come across a rising tide of companies all working to improve access to fertility services. There are a host of fertility companies that wrap digital services (telemedicine) and last-mile delivery (at-home testing kits/prenatal products Legacy, Natalist, Lilia) around fertility-adjacent needs. Another class of fertility companies wrap technology around physical/brick-and-mortar fertility clinics, most notably Kindbody based in NYC.
On the other side of the market, there are also companies building technologies that support fertility centers to improve the efficiency of the IVF process. Companies like ImVitro, Embryonics, and ALife Health develop computer vision technologies to determine how viable an embryo in a lab may be before implantation (thereby improving the efficiency of an incredibly high-cost procedure).
Perhaps most interesting to me, are companies like Carrot Fertility that allow employers the ability to extend fertility as a benefit to their employees. Knowing that employer-sponsored coverage of fertility benefits may be an intermediate stepping stone to some of the aspirational policy changes in progress. It makes business sense for employers as well, as Tammy Sun (CEO of Carrot Fertility explains:
For employers, increasingly, the risk of people going out and pursuing these types of [fertility] treatments and services without that care navigation and that clinical guidance is actually more expensive than not investing in this program altogether
I reached out to Dr. Neel Shah, Chief Medical Officer at Maven who was gracious enough to read an early draft of this post. As one of the leading companies working primarily with employers, it’s great to see Maven thinking about the intersection of fertility and value-based care:
The opportunity to make fertility more value-based is top of mind for me. Similar to other areas of health care, as access has expanded, quality and equity have not. Where I see the greatest opportunities are to educate employers about what trustworthy fertility services look like as they may be the tip of the spear in driving innovation and quality.
I wonder if there is a similar opportunity for a company to package and centralize similar fertility benefits for Managed Medicaid plans and even Worker Unions (like the WNBA player’s union which only recently started covering fertility testing in 2021) that can pool the purchasing power of many underserved patient populations to increase access to fertility workup and treatment. The critical difference with this population is trying to create the same cost-benefit analysis for Medicaid plans - in other words, managed Medicaid is likely not see the same costs (repeat and second-opinion visits by employer-covered REI specialists) or benefits (employee retention because of fertility benefits > hiring new employees). However, perhaps there are indirect costs of not investing in fertility even in an under-resourced population. We may need more research on indirect (and longer-term) costs of infertility (e.g., mental health, undiagnosed ovarian dysfunction, etc…)
One of our companies at AlleyCorp, Diana Health is building a value-based model around prenatal care and maternal health in collaboration with value-oriented health systems. There might be room for a similar approach in the world of fertility treatment where health systems are often losing volume to Maternal-Fetal-Medicine (MFM) or Reproductive Endocrinology & Infertility (REI) private practices. Because so many IVF/IUI pregnancies ends up ultimately becoming high-risk due to age or other factors, hospitals end up having to eat the costs of these lengthier stays anyways. A shared model that simultaneously improves access for underserved patents and is also helps manage the maternal care of the same patients when do they become pregnant may have enough cost savings to support a new care model…but without looking too deeply at the financial calculus my assumption is that we may need to wait until IVF/IUI treatment becomes more affordable.
Other OB/GYN Observations
Probably the biggest piece of news both nationally and politically during the rotation was the leaked Supreme Court opinion that is anticipated to overturn Roe vs. Wade. Many of the residents and providers I worked with were shell-shocked with the news and what this would mean for the future of safe and accessible abortion services.
One of the family med residents I worked with came to NYC intentionally from Georgia to get experience with manual vacuum aspiration procedures and administering abortion/women's health services. As she plans to return and start her own practice in Georgia, she fears for the future state of how the state landscape will shape barriers that inhibit her ability to practice at the top of her scope and what she will be allowed to share with patients.
With my startup hat on, news like this makes me wonder how startups like Hey Jane might be one way tech-enabled services can be a way for women to discreetly (but safely) access medical abortion services (mefo/miso) through certified providers. Obviously there are still plenty of legal hurdles that exist, but am hoping entrepreneurs and providers alike can take this opportunity to brainstorm new care delivery models disparities in access and equity in this space.
Many thanks to a number of folks for feedback and input into this piece - but wanted to first shout-out Dr. Michael Solotke who not only suggested this topic for further investigation but also put me in touch with the inspiring Dr. Tarun Jain and Dr. Allison Komorowski who have both done incredible work in illuminating the many disparities I touch on in this piece.
Big thanks to Dr. Neel Shah at Maven and the wonderful Diana Health team for also inspiring parts of this piece and for all of their great work in creating more accessible, equitable, and value-oriented care delivery models. Lastly, very grateful for all of the incredible OB/GYN residents and faculty I had the chance of crossing paths with while rotating through the Gyn and L&D teams at the Klingenstein Pavillion.