Endometriosis is a debilitating condition that impacts one-tenth of people who have a period, or approximately 6.5 million people (predominantly women) in the United States. Before, during, and after their periods, endometriosis patients experience extreme pain, excessive bleeding, and trouble emptying bladder and bowels, caused by endometrial lesions that grow, bleed, and scar. In almost half of cases, this leads to infertility.
Despite the high prevalence and incapacitating nature of this condition, it is known as the “missed disease.” A 2020 study showed that 75.2% of patients were misdiagnosed with another physical and/or mental illness before receiving an endometriosis diagnosis. This leads to women living with significant chronic pain for years or even decades prior to receiving treatment, which can result in long-term health consequences, including cancer.
A leading cause of the lack of awareness and knowledge of endometriosis pathology, diagnosis, and treatment is the lack of sufficient research efforts and funding for endometriosis (though other factors, such as social stigma, also contribute). Endometriosis research receives $16 million from the National Institute of Health, or approximately 0.038% of the annual budget for health research. Meanwhile, research on HIV/AIDS, which impacts 1.2 million people in the U.S. annually, received $3.1 billion in funding. Despite impacting over 5 times as many people, endometriosis receives approximately 1/200 of the funding that HIV/AIDS does. While this disparity in funding between HIV/AIDS and endometriosis can be attributed to several factors, the primary differentiation factor is that HIV/AIDS impacts predominantly men.
This is not a one-off example: Studies have shown that diseases that primarily impact men receive more funding than diseases that primarily impact women nearly three-quarters of the time.
Of course, one can argue that other factors may play a role in granting funding, such as HIV being more severe than endometriosis, as HIV will lead to AIDS and death if left untreated. However, the discrepancy in funding for women’s health is not solely limited to the case of HIV; rather, it is a recurring theme. Nature Editor Kerri Smith conducted an analysis of funding granted by the NIH, which calculated a disease’s burden, or the amount of death and disability caused by the disease, and the amount of NIH funding that was granted to study it in 2022. Smith found that the ratio of funding to disease burden for diseases that primarily impact women was consistently significantly lower than the ratio for diseases that primarily impact men.
Even within diseases that equally impact both sexes, women are underrepresented in clinical trials. This is especially severe with women of color, pregnant women, and postmenopausal women, groups that have different biological profiles than men yet are oftentimes outright excluded from clinical trials.
Such underrepresentation results in insufficient knowledge about how certain diseases or treatments will impact them. For example, women suffer worse outcomes after heart attack due to underrepresentation — one study on cardiovascular disease included 22,000 patients, none of whom were female — because symptoms present differently in women than men and are less likely to be recognized.
A combination of the application of the “male model” of treatment to biologically different female bodies, and information deficits on primarily female health issues contribute to greater rates of death and disability, insufficient or incorrect diagnosis and treatment, and worse treatment results for women in the United States. Beyond endometriosis and heart attack, women suffered more COVID-19 infections and complications and higher cancer incidence and mortality—to name a few of the most common diseases.
In addition to improving women’s health outcomes, increasing funding of women’s health research bodes significant economic advantages. A 2021 study ran a simulation of the impacts of doubling the research budget for female patients with rheumatoid arthritis from $6 million to $12 million. Even with a conservative assumption that the additional $6 million (0.014% of the NIH’s annual budget) would result in 0.1% improvement in treatment outcomes, the study found that doubling the budget would deliver a 174,000% return-on-investment and add $10.5 billion to the economy in the next 30 years. This prodigious ROI demonstrates the significant impact of rheumatoid arthritis on the productivity of women, which forces them to leave the workforce and decreases their ability to provide at-home support.
All this begs the question: Why is women’s health research so underfunded?
The answer can be divided up into two overlapping reasons: the normalization of women’s pathologies and the lack of women in clinical leadership. Historically, women’s voices have been ignored and dismissed in the healthcare system, often reduced to diagnoses of hysteria or effects of their menstrual cycle. In fact, “hysteria” originates from the Greek word for “uterus.”
Female pathologies are typically viewed as inherent rather than medical problems to be treated, partly because the majority of clinical leadership is male. Though 74.01% of healthcare professionals are women, only a quarter of women serve in positions of leadership in hospitals, leading to most decision-making in the medical field to be done by men. Furthermore, men are much more likely to be published in medical journals compared to women, leading men to have the dominating voice in what issues are important to investigate in healthcare.
The next steps are clear: The health research industry needs to allocate greater funding for research on women’s health and establish higher standards for clinical trial representation. A first step is the creation of grants, such as those provided by NIH’s Office of Research on Women’s Health, which incentivizes researchers to investigate these issues. Furthermore, more robust support and mentorship should be established for female health researchers to increase their matriculation into positions of leadership, so they can call for greater attention to the issues that impact them.
Through staunch dedication to inclusivity, we can continue to shrink these severe gender disparities and provide more equitable healthcare.
