Endometriosis affects 190 million women worldwide. If patients were to found their own country, its population would be the eighth largest in the world, similar in size to Bangladesh’s. Despite its staggering 10% prevalence among the female reproductive-aged population and its associated economic burden and life-altering impact, endometriosis research funding lags far behind that of many less prevalent conditions. This stark disparity cannot be explained by market economics alone; it is a reflection of a systemic neglect of women’s health issues that continues to cost lives, livelihoods, and billions in lost productivity.
The idea that endomtriosis is a minor gynaecological issue for which there is little demand for innovative medical solutions is an all too widespread idea. The numbers tell a different story. If we combine direct healthcare costs and productivity loss, the annual economic burden of endometriosis amounts to~119 billion/year in the US, ~30 billion/year in the EU and ~8.2 billion/year in the UK. A 2024 McKinsey & Company report, Closing the Women’s Health Gap: A $1 Trillion Opportunity to Improve Lives and Economies, projects that addressing women’s health disparities could inject up to $1 trillion into the global economy annually by 2040. A separate report by the World Economic Forum (WEF), Blueprint to Close the Women’s Health Gap, estimates that eliminating these disparities could boost global GDP by $400 billion per year. Apart from improving the quality of life of affected women, the economic case is undeniable—yet funding for conditions like endometriosis remains a mere drop in the ocean.
Despite its devastating effects, endometriosis research remains woefully underfunded. In 2022, the U.S. National Institutes of Health (NIH) allocated just $16 million to endometriosis research—an insulting 0.04% of its total budget, or about $2 per affected individual. Meanwhile, Crohn’s disease, which affects far fewer people, received $90 million, or $130 per patient (this is a mere example of proportionality– I am not a case for deprioritising Crohn’s).
In Europe, the situation is equally bleak. Germany allocates a meagre €5 million annually to endometriosis research.
France established itself as a European leader in endometriosis, having boasted its national endometriosis strategy in 2022, yet the lack of publicly disclosed annual funding figures suggests that meaningful investment remains elusive.
Sadly, endometriosis is just the tip of the iceberg. The lack of funding for endometriosis is part of a much larger pattern of deprioritization of diseases that primarily affect women throughout the 20th and 21st centuries. It was not until 2010, 2014, and 2016 that the Canadian Institutes of Health Research, Horizon Europe, and the National Institutes of Health, respectively, made it mandatory to consider sex as a biological variable.
Additionally, clinical trials in the United States were not required to include women until 1993, with the European Medicines Agency following 12 years later, in 2005. As a result, many medications and treatments used by women were not adequately tested on them.
And the disparities continue to this day. A landmark study by Mirin (2021) analyzed NIH funding relative to disease burden using Disability Adjusted Life Years (DALY), a metric that quantifies the impact of diseases in terms of years lost due to disability or death. The findings? In three-quarters of cases, the NIH overfunds diseases predominantly affecting men, while systematically underfunding those affecting women.
These disparities can be measured with the so-called actual-to-commensurate funding ratio. The actual-to-commensurate funding ratio is a measure used to compare how much funding a disease receives relative to what would be expected based on factors such as its prevalence, burden (e.g., years of life lost or disability caused), and severity. A ratio of 1 would indicate that a disease is funded exactly in proportion to its impact. Strikingly, liver cancer—the only male-predominant condition that received less funding than expected—had an actual-to-commensurate funding ratio of 0.6284 in 2019. Compare that to endometriosis, which had a ratio of 0.1836. And yet, endometriosis was nowhere near the most underfunded women’s health condition. ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), another condition that disproportionately affects women, had an abysmal ratio of 0.0610. Meanwhile, an analysis by Spencer et al. (2019) found that prostate cancer was the most well-funded cancer when adjusted for lethality—while ovarian, cervical, and uterine cancers ranked 10th, 12th, and 14th, respectively.
Endometriosis is simultaneously a global health crisis and economic catastrophe, stripping young ambitious women of their career aspirations. According to Nnoaham et al. (2019), endometriosis patients lose over a month of productivity per year due to debilitating symptoms. In the same vein, Missmer et al. (2021) found that over 40% of individuals with endometriosis reported that their symptoms directly impacted their career trajectory, leading to lost job opportunities, reduced work hours, or even forced career changes. The total economic burden? An estimated $119 billion annually in the U.S. alone (Ellis et al., 2022). To put that into perspective, Slovakia’s entire GDP in 2021 was $116.5 billion.
And it’s not just the public sector turning a blind eye toward endometriosis patients. While venture capital (VC) investment in women’s health has seen some growth in recent years, it remains disproportionately low compared to other healthcare sectors. In 2023, women’s health accounted for just 2% of the $41.2 billion in venture funding allocated to health innovators, encompassing healthcare services, technology systems, pharmaceuticals, biotechnology, and medical technology companies.
Despite (or maybe precisely because?) its focus on the female body, the femtech industry remains largely male-dominated—both in leadership and funding. Only 21% of femtech companies have a female (co-)founder, and since 2014, just 10% of venture capital (VC) funding in the sector has gone to women-led companies. This stark disparity underscores the barriers women face in leading and securing investment for innovations that directly impact them. Ironically, Flo, the only European women’s health company to achieve unicorn status, was founded by two men. While the app has certainly helped millions track their cycles, its success also highlights a broader issue: women’s health is often shaped—and funded—by men, while female-led startups in the space remain belittled.
Are there some positive trends? Absolutely. In 2024, for instance, the National Institutes of Health (NIH) launched the RADx Tech for Endometriosis initiative, a groundbreaking effort aimed at accelerating the development of innovative, noninvasive diagnostic tools. The program seeks to harness cutting-edge technologies, including artificial intelligence, machine learning, and biomarker-based screening methods, to replace the outdated reliance on laparoscopy—an invasive surgical procedure that remains the gold standard for diagnosis. Given that endometriosis currently takes an average of 8 to 10 years to diagnose, this initiative represents a crucial step toward improving early detection and reducing the burden on patients.
The NIH grant is part of a broader positive development in women’s health. Ten years ago, there was no national endometriosis strategy in France; VC funding in endometriosis had been almost non-existent and painful periods were much more stigmatized. However, as the previous examples have outlined, gaps in both public and private sector funding remain enormous.
With the world in economic and political upheaval, healthcare ministers and venture capitalists alike will have to decide whether to empower women’s health and endometriosis innovators on their hard-fought, upward trajectory—or allow systemic neglect to halt their progress. The clock is ticking, and while the world spins in chaos, it’s high time for those in power to rise and dance to the rhythm of change rather than sit idly in the shadows of indifference.
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