By Johanna Meszaros, Alumna of the RUG LLM International Human Rights Law ‘25

Imagine there is a leak inside of your wall. In order to fix it properly, you would have to take one afternoon opening your wall, finding the damage, assessing the costs, and, possibly, finding a larger issue at hand that requires time and money. Instead, you decide to repaint the damp spot every week and keep placing buckets to catch the water. This is how under-researched women’s health is often managed.

For women-specific conditions, under-research creates a cascade of inefficiencies: delayed diagnosis, repeated consultations, ineffective treatments, and avoidable complications. The Global Burden of Disease 2019 Study addresses women’s health in terms of disability-adjusted life years (DALYs), finding that women spend 25% more time in “poor health” relative to men. [1] Further, it shows that by addressing these gaps in women’s health could reduce the time women spend in poor health by almost two-thirds. [2] This blog explores the types of women-specific conditions, the lack of research and the consequences it brings.

The guiding legal framework for this blog is Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) which protects the right to benefit from scientific progress. [3] As discussed in the previous blog, the right to scientific progress is used as a tool for the realization of the right to health under ICESCR Article 12. [4] This tool is necessary to understand the gender-sensitive approach that guides international law for these rights.

What conditions are women-specific?

When talking of women-specific conditions these primarily refer to sex-specific conditions affecting individuals with female reproductive anatomy. These make up about 5% of women’s health burden. [5] Gynecological health is essential to women’s health throughout the life course, from menstruation and pregnancy to menopause. [6] These physiological processes generate distinct risks and physiological changes, while also interacting with broader health outcomes. Increasing evidence shows that reproductive conditions can have systemic effects beyond the reproductive system. Conditions like Endometriosis or Polycystic Ovary Syndrome (PCOS) are increasingly associated with elevated cardiovascular risk and systemic inflammation. [7] Premenstrual dysphoric disorder (PMDD), as discussed in Monique van Cauwenberghe’s blog, involves severe and debilitating mental health symptoms and falls under the WHO understanding of mental health, thereby engaging ICESCR Article 12 on the right to mental health. [8]

A cascade of inefficiencies: delayed diagnosis, repeated consultations, ineffective treatments, and avoidable complications

As stated earlier, the cost of ignoring women-specific conditions is high on the global economic scale – that is if the argument of the right to an equal health access of 4.12 billion women is not sufficient. Taking endometriosis as an example, studies have shown that it is common for diagnosis to take up to 10 years. [9] This delayed diagnosis can be linked to healthcare professionals not recognizing the importance of symptoms or considering this disease as a possibility, as well as women not seeking help because of a perception that pelvic pain is normal. [10] The official Endometriosis Guideline of European Society of Human Reproduction and Embryology states that early diagnosis and treatment may be associated with decreasing the growth rate and potential progression pattern of endometriotic lesions, cysts and nodules. [11] Endometriosis alone is estimated to cost around €9.579 per patient annually, with productivity losses exceeding direct healthcare costs. [12] More importantly, these costs are not evenly distributed across the care pathway: patients with longer diagnostic delays incur significantly higher healthcare costs, with pre-diagnosis expenditures rising to over $34.000 in some cases. [13]

The human rights level

A core component of the right to health, as articulated by the Committee on Economic, Social and Cultural Rights (CESCR) in General Comment No. 14, is the AAAQ framework, which requires that health systems ensure services are Available, Accessible, Acceptable, and of Quality. [14] This framework provides the primary standard for assessing compliance with Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR).

However, the AAAQ framework alone does not address how the underlying knowledge informing these services is produced. This is where Article 15 ICESCR, as elaborated in General Comment No. 25, becomes necessary. [15] While General Comment No. 14 focuses on access to healthcare, General Comment No. 25 extends state obligations to the production, direction, and dissemination of scientific knowledge itself.

In the context of women’s health, this distinction is critical. Under-representation in medical research does not merely affect the delivery of healthcare, but the quality of the evidence on which that care is based. The Special Rapporteur on cultural rights highlights that states must actively shape scientific progress through purposive funding mechanisms and inclusive research incentives, particularly in areas of public importance such as health. At the same time, international human rights standards require that the benefits of scientific research, including access to healthcare, knowledge, and new treatments, are equitably shared across society. [16] General Comment No. 25 explicitly requires that scientific progress be developed and applied in a non-discriminatory and inclusive manner, including through gender-sensitive research approaches.

When applied together, Articles 12 and 15 reveal a structural issue: where women are excluded from research or where women-specific conditions are underfunded, the resulting gaps in knowledge undermine the quality dimension of the AAAQ framework. Diagnostic pathways become less reliable, treatments less effective, and information incomplete. In this sense, deficiencies in scientific progress directly translate into deficiencies in the right to health.

Under the Microscope - what follows?

The underrepresentation of women-specific conditions in medical research is not a marginal oversight, but a structural failure with measurable consequences. As shown, gaps in research translate into delayed diagnoses, ineffective treatments, and avoidable economic and human costs. Through the lens of the AAAQ framework, these shortcomings raise serious questions about whether current health systems meet the standards required under the right to health. Where knowledge production itself is incomplete, access to quality healthcare cannot be fully realised. Addressing these gaps is therefore not only a scientific necessity, but a legal and systemic imperative. In the next blog, we will be delving into the question of why women’s health research is underfunded – and which human rights this violates.

Endnotes
[1] Global Burden of Disease Collaborative Network, “Global Burden of Disease Study 2019 (GBD 2019),” Institute for Health Metrics and Evaluation (IHME), 2020.

Disability-adjusted life years (DALYs) is a measure of overall disease burden, expressed as the cumulative number of years lost due to ill-health, disability or early death.

[2] World Economic Forum, McKinsey Health Institute, “Closing the Women’s Health Gap: A $1 Trillion Opportunity to Improve Lives and Economies”, January 2024, 5

[3] International Covenant on Economic, Social and Cultural Rights (adopted 16 December 1966, entered into force 3 January 1976) 993 UNTS 3, art 15

[4] International Covenant on Economic, Social and Cultural Rights (adopted 16 December 1966, entered into force 3 January 1976) 993 UNTS 3, art 12(2)

[5] World Economic Forum, McKinsey Health Institute, “Closing the Women’s Health Gap: A $1 Trillion Opportunity to Improve Lives and Economies”, January 2024, 7

[6] National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on a Framework for the Consideration of Chronic Debilitating Conditions in Women. ”5, Female-Specific and Gynecologic Conditions.” in Advancing Research on Chronic Conditions in Women. Edited by Batulan Z., Bhimla A., Higginbotham E.J., Washington (DC): National Academies Press (US); 2024

[7] Che, Y., et. al. (2023). “Polycystic Ovary Syndrome: Challenges and Possible Solutions”, in Journal of clinical medicine, 12(4), 1500

[8] van Cauwenberghe M, “Breaking the Cycle: Promoting Action and Understanding of Premenstrual Dysphoric Disorder Through the Right to Mental Health” (University of Groningen, March 9, 2026) <https://www.rug.nl/rechten/onderzoek/expertisecentra/gchl/blog/breaking-the-cycle-promoting-action-and-understanding-of-premenstrual-dysphoric-disorder-through-th> accessed April 13, 2026

[9] De Corte, P. et al. “Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics - A Systematic Literature Review” in BJOG: An International Journal of Obstetrics & Gynaecology, 2025; 132:118-130, quoting Swift, B., et al., “Prevalence, Diagnostic Delay and Economic Burden of Endometriosis and Its Impact on Quality of Life: Results From an Eastern Mediterranean Population,” in European Journal of Public Health 34, no. 2 (2024): 244–252.

[10] “Overview” (NICE) <https://www.nice.org.uk/guidance/ng73> accessed April 13, 2026

[11] European Society of Human Reproduction and Embryology, “Endometriosis: Guideline of European Society of Human Reproduction and Embryology”, 2022:

<https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx> accessed April 13, 2026

[12] Simoens, S., et al.. (2012). “The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres” in Human Reproduction, 27(5), 1292–1299. https://doi.org/10.1093/humrep/des073

[13]  Surrey, E., et al.. (2020). “Impact of Endometriosis Diagnostic Delays on Healthcare Resource Utilization and Costs”. in Advances in therapy, 37(3), 1087–1099. https://doi.org/10.1007/s12325-019-01215-x

[14] Committee on Economic, Social and Cultural Rights, General Comment No 14: The Right to the Highest Attainable Standard of Health (Art. 12), (August 2000) UN Doc  E/C.12/2000/4

[15] Committee on Economic, Social and Cultural Rights, General Comment No 25: Science and Economic, Social and Cultural Rights (Art 15 ICESCR), (April 2020) UN Doc E/C.12/GC/25, paras 16-20

[16] Farida Shaheed, Report of the Special Rapporteur in the field of cultural rights (2012) UN Doc A/HRC/20/26, paras 33, 60, 67.