Key takeaways:
- A global review found a significant scarcity of dedicated endometriosis policy frameworks, despite the condition affecting an estimated 190 million people worldwide.
- Countries primarily use 4 approaches to endometriosis policy development, including standalone national action plans, integrated policies, standalone laws, and ad-hoc initiatives.
- Australia and France are the only nations with comprehensive standalone national action plans, serving as leading examples for future policy development.
- Scotland’s Women’s Health National Action Plan demonstrates effective patient-informed policymaking, emphasizing reduced diagnostic delays and gender equity in care.
- Only a small fraction of global reproductive or national health plans currently address endometriosis, though recent policy momentum suggests increasing awareness and future progress.
There is a global scarcity of endometriosis policy framework documents, but promising examples such as those from Australia and France can be adapted by other nations to improve their endometriosis policies, according to a review published in The Lancet Obstetrics, Gynaecology, & Women’s Health.1
Despite being reported in approximately 190 million individuals worldwide, endometriosis remains under-represented in policy agendas, contributing to the gender gap in health care observed worldwide.2 However, non-governmental organizations (NGOs) and governmental organizations have made steps to increase recognition.1
“Health-care governance is interwoven and integral to the operationalising of the remaining building blocks that make up health-care delivery systems,” wrote investigators.
Approaches to developing endometriosis policy
The scoping review was conducted to evaluate endometriosis policies worldwide within health care frameworks. Literature was identified through searches of the Ovid MEDLINE ALL, Embase, Global Health, CINAHL, EconLit, Web of Science, and Global Index Medicus databases from inception to July 16, 2024.
Grey literature searches were also performed through Google and Google Scholar. Publications from policy makers or prominent NGOs about endometriosis were included, with data categorized by country. Only high-level documents and policies were assessed.
There were 477 documents included in the final analysis, 34 of which were obtained from databases and 443 through gray literature searches. When developing endometriosis policies, countries used 1 of 4 endometriosis approaches.
These approaches included the development of 3 strategic frameworks: standalone endometriosis national action plans (NAPs), integrated endometriosis policies within other health NAPs, and standalone endometriosis law. Ad-hoc initiatives were the final approach countries utilized.
Standalone national action plans
Australia and France were the 2 countries with standalone NAPs. In Australia, the primary goals of the NAP were to raise awareness, maximize access to clinical management, and promote research. This was accomplished by developing the National Endometriosis Clinical and Scientific Trials network to fill research gaps.
Following the Australian NAP in 2018, France developed a NAP in 2020 with support from nearly 200 experts. This shared the same priorities as the NAP from Australia, accomplishing these goals by developing the world's largest endometriosis epidemiological database.
Motions for an endometriosis NAP have been raised in Sweden, Austria, Canada, Germany, Spain, and Portugal. Endometriosis policies are also included in women’s health NAPs for 19 countries, though only 4 had government-led women’s health NAPS that include endometriosis initiatives.
An example of these initiatives has been observed in Scotland's Women's Health NAP, which was developed based on input from 10,783 endometriosis patients. Alongside sharing the goals of standalone endometriosis NAPS, this program aimed to decrease the diagnosis delay from 8 years to 12 months.
Status of reproductive and national health plans worldwide
The NAP aligned its policies with the European Convention on Human Rights and the Convention on the Elimination of Discrimination Against Women to reduce gender disparities in health care. Additionally, multiple initiatives were completed to reach the NAP’s goals, as discussed in a 2023 report.
Of the 194 World Health Organization member countries, 113 were reported as having reproductive health plans, only 31 of which were up to date as of 2024. Additionally, only 8 countries had NAPs that referred to endometriosis, with those from Finland, France, Italy, Maldives, and Mauritius outlining government initiatives.
A single endometriosis initiative was identified in 3 reproductive health NAPs, with a focus on education and research. While 184 countries had national health plans, only 106 were active as of 2024, and only Italy included endometriosis. Overall, only the beginnings of an endometriosis response were found in most countries.
“However, the future holds promise, shown by a marked surge in recent policy initiatives and an enhanced societal and state consciousness regarding endometriosis,” wrote investigators.
References
- Gibbons T, Evans D, Skidmore B, et al. Endometriosis policy and delivery systems: a comprehensive global scoping review. The Lancet Obstetrics, Gynaecology, & Women’s Health. 2025;1(3):E232-E244. doi:10.1016/j.lanogw.2025.100027
- Giudice LC, Horne AW, Missmer SA. Time for global health policy and research leaders to prioritize endometriosis. Nat Commun. 2023. doi.org:10.1038/s41467-023-43913-9
