October 20, 2021

Facing Infertility: How a Shift in Approach, Education, and Policy Could Improve Outcomes

Infertility—defined as failure to conceive after 1 year of regular, unprotected sex—is increasingly common in the United States. For the more than 10% of couples that are affected by infertility, the physical, emotional, and financial challenges are exacerbated by high patient burden for self-education and advocacy, inconsistent residency training and provider education, and challenges related to insurance coverage.

While there are several options available to treat infertility in women, factors such as cost, intensity, and success rate can hinder access and create disparities in reproductive health. The treatments can also range in invasiveness—from less invasive options such as medication that induces ovulation and intrauterine insemination, to more invasive options such as surgeries and assisted reproductive technology procedures, including in vitro fertilization (IVF). There are also important diagnostic tools and procedures, such as tubal flushing, that can serve as an important step in identifying from where a couple’s infertility challenges may stem. These evaluations and treatments—though a key part of the fertility journey—can vary significantly in terms of cost and intrusiveness, and therefore, may be affected by an individual’s or couple’s personal situation.

To elucidate how to eliminate barriers to access and reduce health disparities related to treatments for infertility in women, SWHR convened an interdisciplinary working group of health care providers, researchers, patients and patient advocates, and policy leaders for a roundtable meeting on September 20-21, 2021. During the discussion, participants shed light on the science and health care landscape and developed strategies to address knowledge gaps related to improving access to fertility treatment options, additional research related to fertility, and maternal health.

Overarching Themes

Over the two-day roundtable, the SWHR Fertility Working Group coalesced around several overarching areas of need when it comes to infertility in women. To begin, there was a recognition that the narrative for clinical training in fertility/infertility needs a paradigm shift—changing the focus from unintended pregnancy prevention to intentional pregnancy planning and reproductive health.

“A positive note that we can interject in OB/GYN and MD training all over is that there’s been so much focus on unintended pregnancy for the last two decades that we really need to focus on intended pregnancy and what that means and when you should do it and what are the right circumstances [for getting pregnant]…” – Kurt T. Barnhart, MD, MSCE, Associate Chief, Penn Fertility Care, Penn Medicine

Participants also agreed that there was a need to consider infertility in the broader context of gynecologic and overall health, with the understanding that infertility is a health issue with morbidities that extend beyond pregnancy. Fertility Within Reach Co-Founder and Executive Director Davina Fankhauser shared that the focus shouldn’t be on fertility, but on fertility health care.

From the patient perspective, Working Group members agreed that there is an unreasonably high burden on patients throughout their fertility and infertility journeys. This includes self-education, patient advocacy, and the weight of infertility on one’s psychosocial well-being. These points were amplified during the roundtable discussion by Kerri Morton, Davina Fankhauser, and Regina Townsend, who each shared the hurdles they had to overcome, the emotional suffering they endured, and the work they did on their own in their respective fertility journeys.

Increasing Patient and Provider Awareness

Despite the prevalence in infertility, there are important education opportunities for both patients and providers that could improve the health care experience and outcomes.

For patients, participants noted the lack of knowledge on these topics. “The general education in [reproductive health and care] seems to be sorely lacking in the general public at large,” said Tarun Jain, MD, Associate Professor and Medical Director at Northwestern University School of Medicine. He continued, “We in the fertility world tend to see on average patients who are highly educated, and even with that high level of education, many of them don’t know the basics of reproduction…There’s a huge opportunity to find a way to better educate the general population so they can be more empowered to make wiser choices.”

Moreover, participants agreed that in addition to providing education on standard fertility and infertility topics, patients need to be informed on long-term family planning and on which health care providers they should see for various fertility needs, whether a reproductive endocrinology and infertility (REI) specialist or a fertility specialist. They also noted the need for and value of engaging men early and often in the process, including testing male fertility in parallel to testing female fertility.

With respect to health care providers, participants shared that current residency training on fertility is inconsistent among educational institutions and that it is often not comprehensive. Medical professionals and their staff alike would be well served by additional training that focuses on fertility, so that they can more substantively engage with patients on fertility issues. Further, to help address disparities related to fertility, there needs to be education on misconceptions and biases. Working Group member Dr. Torie Comeaux Plowden specifically raised how Black women often face the stereotype of being more fertile. That stereotype, she said, places a pressure and stigma on infertile women. Culturally relevant guidance for clinicians and clinical staff could help reduce provider misconceptions and biases.

Recognizing Research and Clinical Needs

Working Group members spent much time during the roundtable discussing the current state of science and existing gaps in knowledge and research. Participants identified research needs across the continuum—from basic research needs to translational and clinical research needs.

With respect to basic research, participants noted the importance of further exploration of fertility associated with underlying gynecologic conditions, such as endometriosis and uterine fibroids, and their impacts on pregnancy and childbirth; the need for a better understanding of age-related infertility; and how genetics can influence responsiveness to fertility treatments. Other needs identified include comparing the benefits of oil-based hysterosalpingography (an X-ray procedure also known as tubal flushing that assesses tubal patency) for endometriosis-associated infertility with other infertility treatments—both from a cost-effectiveness and success rate standpoint—and how to make IVF more efficient in terms of both process and cost.

Improving Access to and Understanding Implications of Fertility Treatments

Another key aspect of the conversation was around policy, and namely, access to fertility treatments. As RESOLVE: The National Infertility Association President and CEO Barbara Collura noted, because insurance hasn’t viewed infertility or the treatment of it as medically necessary, it is not covered and can be expensive for patients. Participants discussed how infertility is not currently viewed as something that should be covered under insurance and ultimately agreed that increased coverage for fertility services and treatments are needed.

Additional areas that could be beneficial for patient access include implementing policies that promote inclusiveness and cover a wider array of care options, including diagnosis, treatment, cryopreservation, and the incorporation of telehealth to address gaps in access to appropriate health care specialists.

These policies could also help address key health disparities issues related to access, patient education, physician bias, racial and ethnic disparities in reproductive endocrinology and infertility, and more. Townsend said that though her fertility journey was a very long one, she “learned so much…about the importance of having conversations about these issues and about the historical and contextual relevance of race in reproduction. So much of what I learned about the differences in how the information gets to us, the differences in how we have access to care…I’ve started to discuss infertility more as a reproductive justice and reproductive health issue…”

Looking Ahead

While there are several areas of concern when it comes to infertility—including disparities and inequities associated with fertility treatments; cost, language, and social barriers to care; the need for patient advocacy and education; and more—there are also tremendous opportunities in this health care space, spanning increased research investment, patient and provider education, improved clinical care practices, and multi-level policy reform.

SWHR will continue to work with its Fertility Working Group members to pinpoint opportunities to increase awareness, advance policies that expand access to coverage and care and reduce disparities for women experiencing challenges with fertility, and advocate for improved health equity and outcomes.

The SWHR Fertility Program is supported by educational sponsorship from Guerbet. SWHR maintains complete control and independence over program development, content, and work products.