Guest Post by Shruthi Mahalingaiah, MD and Sasha Ottey
We’ve seen the recent headlines about declining birth rates across the globe. But this trend isn’t new. Birth rates have been declining for at least the past decade in the United States for a multitude of reasons – financial burden, economic strain, increased access to birth control, and prioritizing educational and career goals.
Fertility treatments have opened new doors for people who do want to have a baby. However, high costs and limited access are major barriers to family building for many people, which perpetuates disparities in fulfilling reproductive goals. And, the most common cause of female infertility—polycystic ovary syndrome (PCOS)—isn’t included in the conversation when talking about birth rates. Women with PCOS might want to get pregnant but may have difficulty because they aren’t ovulating regularly.
PCOS is one of the most common endocrinopathies among women. It is defined by irregular or infrequent menstruation accompanied with androgen excess measured in the blood or manifested by physical symptoms such as acne, excess facial or body hair, or scalp hair loss. The causes of PCOS are multifactorial, including genetic and environmental factors.
PCOS isn’t just a reproductive health problem, it impacts the entire body. Women with PCOS have a higher risk for other health conditions, including pregnancy complications, diabetes, cardiovascular disease, endometrial cancer, sleep disorders, and mental health disorders. Recent studies also show racial and ethnic disparities in PCOS, with ethnic minorities having worse cardiometabolic risks and lower access to infertility care.
Despite affecting one in 10 women in the U.S., PCOS has historically had little mention in federal legislation. PCOS Challenge: The National Polycystic Ovary Syndrome Association is leading national advocacy efforts and working with members of Congress on resolutions, reports, and legislation related to PCOS. Senator Elizabeth Warren is leading the U.S. Senate resolution, which aims to recognize the seriousness of PCOS, the need to fill knowledge, research, and care gaps around the disorder, by designating September as PCOS Awareness Month.
PCOS advocacy has reached state governments as well, with Massachusetts leading the way in seeking to reaffirm the seriousness of PCOS, with a similar bill to the federal resolution, H. 3735, filed by lead sponsor Representative Nika Elugardo (D-Boston).
Back at the national level, the Appropriations bill, approved by the House of Representatives on July 15, 2021, urges the National Institutes of Health (NIH) to investigate and report on the current status of PCOS research, as well as add PCOS to the NIH Research, Condition, and Disease Categories (RCDC) reporting. PCOS—a condition that has been recognized since 1935 and is the most common hormone disorder in women—is currently absent from the NIH RCDC reporting, which lists its annual funding support. Adding PCOS to this reporting will improve the transparency of NIH-funded PCOS research and will ultimately help identify research gaps, reduce the economic burden of the disorder, and improve health outcomes and quality of life for patients.
The NIH currently invests about $41 billion annually. PCOS historically has been allocated $21 million of NIH funding annually, despite its prevalence, morbidity, economic burden, and negative impact on fertility and quality of life for those with PCOS and their families. Compared to other diseases of similar degrees of morbidity and impact on quality of life to PCOS, one study noted that PCOS remains underfunded, receiving a quarter of comparable funding.
People with PCOS have a right to their full bodily autonomy fulfilled, so research needs to be funded that will improve the services and care available to treat PCOS. But it’s not just about improving treatment or finding a cure. We need to address institutionalized sexism, racism, and ableism in our health systems and societies, which prevents people with PCOS from being able to access quality care in the first place. Many medically necessary treatments, including infertility treatments, certain medications, nutrition counseling, and dermatologic treatments for people with PCOS are not covered by insurance. This increases the mental and financial burden on people with PCOS. More research funding will help scientists gather data needed to restructure healthcare delivery towards patient-centered care. Only then will people with PCOS truly have bodily autonomy, as well as choice over if, when and how to build a family.
As a reproductive endocrinologist at Mass General Hospital, Shruthi Mahalingaiah cares for patients with a wide range of gynecologic conditions, including PCOS. She strives to build up scientific knowledge of how the outside world impacts reproductive health as an environmental health epidemiologist at the Harvard T.H. Chan School of Public Health. Dr. Mahalingaiah has published several papers related to PCOS.
Sasha Ottey is Founder and Executive Director of PCOS Challenge: The National Polycystic Ovary Syndrome Association, which is the leading nonprofit support and advocacy organization for people affected by polycystic ovary syndrome (PCOS). Sasha’s expertise includes patient engagement, communication and advocacy and coalition-building around polycystic ovary syndrome. She has published several papers on PCOS.