428
Views
0
CrossRef citations to date
0
Altmetric
Editorial

“Ladies first”: a plea for prioritizing women’s inclusion in the research and health care agenda

, MD, PhD

March is here again. It is time to celebrate International Women’s day and Endometriosis awareness month. Medical societies, nongovernmental organizations (NGO), governments, celebrities, politicians and people in general fill social media outlets, TV and the streets with parades, festivities and speeches to honor women’s achievements and educate people about endometriosis. After years of much deserved celebration honoring women and boosting endometriosis awareness, unfortunately women remain invisible as far as research and healthcare are concerned. One Wonders if 2024 will be a game changer year for women.

The year has began with hope as during the 2024 World Economic Forum the McKinsey Health Institute presented a groundbreaking report: Closing the women’s health gap: A $1 trillion opportunity to improve lives and economies. The document builds on previous data on the gender health gap and concludes women spend 25 percent more time in “poor health” in comparison to men. Investing in female health could not only improve the health of these women and result in global economic gains of at least $1 trillion annually by 2040 (McKinsey & Company Citation2024).

The report points to the huge economical benefits we might achieve if we took better care of our women as economical prosperity is closely associated to health. Despite concentrating on the possible economical aspects of investing in women’s health and achieving gender health equity, the McKinsey & Company document reminds “there is also a moral imperative to close the women’s health gap and to improve the lives of millions of women worldwide.” There should remain no doubt about that. Relevant effects on equity, inclusion and benefits for the health of future generations are also expected as the womb has crucial influence on a baby’s future wellbeing.

Furthermore, the need to change the focus in the women’s health agenda has been shown as non-communicable diseases (NCDs) have become the major causes of death and disability for women all over the globe, even in in low-income and middle-income countries (Norton Citation2016). Apparently, there are differences in how males and females respond to illnesses. Women present different responses to diseases and drugs but remain underrepresented in clinical trials. A Danish study for example found differences between sexes in terms of incidence, risk, and several aspects of diagnoses across all areas of disease. Authors concluded there is an urgent need for a better sex-stratified medicine (Westergaard et al. Citation2019). Another recent publication revealed middle-aged American women who had an early menarche displayed a higher risk of developing type 2 diabetes (DM2) and increased risk of stroke complications among those living with DM2, pointing to a possible role of female hormones in disease development (Santos et al. Citation2023). Diabetes is a NCD that has been escalating in the past few years and is expected to reach around one billion people in the coming years, the majority of them women. The need for gender-specific research and healthcare is loud and clear.

The gender disparity is sadly not restricted to access to healthcare. There is a huge data gap which leads to inadequate evaluation of the women’s health burden, hindering research, innovation and funding.The truth is that women’s health desperately needs to be included in the research agenda if we really aim to fight the increasing rates of maternal morbidity and mortality as well as the staggering numbers of women developing NCD. In order to develop evidenced-based care to women we need to invest in research so as to fill fundamental gaps in knowledge related to female-specific diseases and the way they respond to illnesses, drugs and treatments (Temkin et al. Citation2022).

One of the major women’s health problems the McKinsey & Company document addresses is that most of the research in female’s health primarily focuses on diseases with elevated mortality such as cancer while diseases that impair quality of life and produce disability such as endometriosis, menopause and polycystic ovary syndrome are left behind. As about 45 percent of the burden affect working age women in whom these conditions are rather frequent, negative effects on work productivity and income may be seen.

Endometriosis is a good example of a female disease that is neglected in terms of research funding and access to healthcare. Although endometriosis is commonly regarded as a “modern-day woman’s disease,” it was first described in 1860 by Von Rokitanski and remains an enigma which challenges doctors all over the world. It is a benign incurable estrogen dependent disease that affects one in 10 women worldwide leading to chronic pelvic pain and infertility. The heterogeneous clinical presentation of the disease, the lack of noninvasive diagnostic tools, pain normalization and reduced awareness delay diagnosis and therefore access to proper treatment by 3 to 12 years (Giudice, Horne, and Missmer Citation2023). As the disease affects young women at a time when they are making important personal and professional decisions, the disease produces a negative effect on their quality of life. In addition to chronic pelvic pain and infertility, endometriosis treatments may entail the use of hormonal medications with unbearable side effects to many as well as surgeries and the need for assisted reproduction which all contribute to the burden of disease (Ellis, Munro, and Clarke Citation2022). The costs involved in terms of healthcare and lost workdays are also huge (Soliman et al. Citation2016). Numbers confirm that productivity loss related to pelvic pain comprise the bulk of costs (75–84 percent) (Armour et al. Citation2019). The literature is clear about the need for multidisciplinary approach in order to achieve better therapeutic results but sadly this is available to only a few (Bourdon et al. Citation2024).

Despite the various negative effects endometriosis has on women’s wellbeing, the healthcare system and the economy it receives little research funding (Ellis, Munro, and Clarke Citation2022). Published studies reveal unmet needs and research gaps in endometriosis that remain neglected (As-Sanie et al. Citation2019; Giudice, Horne, and Missmer Citation2023). Pain normalization, cultural beliefs and stigma related to menstruation, decreased awareness and education about the disease among healthcare providers, people in general and the patients themselves contribute to the current appalling situation in endometriosis care (As-Sanie et al. Citation2019; Bourdon et al. Citation2024). Investments in research to answer fundamental questions in endometriosis pathophysiology, diagnosis and treatment remain ridiculously low. In 2022, the National Institutes of Health (NIH) invested only 0.038 percent of the health budget in endometriosis whereas in the European Union research projects received around 15 million euros over the past years. On the other hand, costs of work absenteeism and sick leave related reached 30 billion euros annually (Viganò, Casalechi, and Dolmans Citation2024). The numbers speak for themselves and point to the need for prioritizing endometriosis care and research.

The gender disparity is sadly not restricted to access to healthcare. There is a huge data gap which leads to inadequate evaluation of the women’s health burden, hindering research and innovation. Women are usually underrepresented in clinical trials so specific gender differences related to the response to drugs and or disease presentation for example are overlooked. The sex- health gap consequently widens thus depriving women of the right to proper healthcare with negative consequences to their families and communities (Norton Citation2016; Temkin et al. Citation2022).

Removing the invisibility cloak women wear as far as healthcare and research are concerned is of utmost importance as women make up almost half of the world population and comprise the majority of the health and social care workers. Moreover, there is no doubt female participation is a vital driving force for economic growth which will benefit everyone especially young people and children.Keeping women healthy is a crucial step toward equity and social justice. The World Health Organization (WHO) (Citation2021) has already set an agenda with six priorities for women’s health including the need to increase female presence in leadership roles both in research and public health, provision of high-quality reproductive and sexual healthcare to all, stop violence against women and prevent NCD.

Bridging the gender gap in healthcare and research is a tremendous challenge but 2024 looks promising as the theme has attracted much attention at the Davos World Economic Forum and sparked initiatives in the United States and in the scientific community resulting in several publications both in specialized journals and the lay press. Nature has started a series of papers discussing ways to improve female health and pave the way to health equity in a global scale (Nature Citation2024). At Women & Health we have also published a series of editorials discussing the need to put female health on the priority agenda (Carneiro Citation2023, Citation2024). It is about time sex is considered a biological variable and included in research and clinical trials. Taking into consideration the specificities women face throughout their life-course, from puberty to menopause is a fundamental step to develop research protocols and healthcare frameworks that will result in better health for women and girls all over the world while improving the life of women, their families and communities. According to the US Dictionary, “Ladies first is an expression indicating that women should be given priority or preference in certain situations” (US Dictionary Citation2024). I could not agree more as far as healthcare and research are concerned.

References

  • Armour, M., K. Lawson, A. Wood, C. A. Smith, J. Abbott, and P. Thumbikat. 2019. “The Cost of Illness and Economic Burden of Endometriosis and Chronic Pelvic Pain in Australia: A National Online Survey.” Public Library of Science One 14 (10): e0223316. PMID: 31600241; PMCID: PMC6786587. https://doi.org/10.1371/journal.pone.0223316.
  • As-Sanie, S., R. Black, L. C. Giudice, T. Gray Valbrun, J. Gupta, B. Jones, M. R. Laufer, et al. 2019. “Assessing Research Gaps and Unmet Needs in Endometriosis.” American Journal of Obstetrics & Gynecology 221 (2): 86–94. Epub 2019 Feb 18. PMID: 30790565. https://doi.org/10.1016/j.ajog.2019.02.033.
  • Bourdon, M., C. Maignien, G. Giraudet, J. P. Estrade, E. Indersie, C. Solignac, E. Arbo, H. Roman, C. Chapron, and P. Santulli. 2024. “Investigating the Medical Journey of Endometriosis-Affected Women: Results from a Cross-Sectional Web-Based Survey (EndoVie) on 1,557 French Women.” Journal of Gynecology Obstetrics and Human Reproduction 53 (2): 102708. Epub 2023 Dec 12. PMID: 38097043. https://doi.org/10.1016/j.jogoh.2023.102708.
  • Carneiro, M. M. 2023. “Four Billion Reasons to Include women’s Health in the Research Agenda.” Women & Health 63 (2): 71–72. PMID: 36703265. https://doi.org/10.1080/03630242.2023.2170207.
  • Carneiro, M. M. 2024. “Women’s Health in 2024: Change Now for Tomorrow Will Be Too Late.” Women & Health 64 (1): 1–4. Epub 2023 Dec 28. PMID: 38154485. https://doi.org/10.1080/03630242.2024.2292320.
  • Ellis, K., D. Munro, and J. Clarke. 2022. “Endometriosis is Undervalued: A Call to Action.” Frontiers in Global Women’s Health 3:902371. PMID: 35620300; PMCID: PMC9127440. https://doi.org/10.3389/fgwh.2022.902371.
  • Giudice, L. C., A. W. Horne, and S. A. Missmer. 2023. “Time for Global Health Policy and Research Leaders to Prioritize Endometriosis.” Nature Communications 14 (1): 8028. PMID: 38049392; PMCID: PMC10696045. https://doi.org/10.1038/s41467-023-43913-9.
  • A life-course approach to women’s health. 2024. Nature Medicine 30 (1): 1. PMID: 38242978. https://doi.org/10.1038/s41591-023-02777-8.
  • McKinsey & Company. 2024. “Closing the Women’s Health Gap: A $1 Trillion Opportunity to Improve Lives and Economies.” https://www.mckinsey.com/mhi/our-insights/closing-the-womens-health-gap-a-1-trillion-dollar-opportunity-to-improve-lives-and-economies#/.
  • Norton, R. 2016. “Women’s Health: A New Global Agenda.” Womens Health (Lond) 12 (3): 271–273. Jun. Epub 2016 May 18. PMID: 27189820; PMCID: PMC5384510. https://doi.org/10.2217/whe-2016-0010.
  • Santos, M. P., Y. Li, L. A. Bazzano, J. He, K. M. Rexrode, and S. H. Ley. 2023. “Age at Menarche, Type 2 Diabetes and Cardiovascular Disease Complications in US Women Aged Under 65 Years: NHANES 1999–2018.” BMJ Nutrition, Prevention & Health 6 (2): 293–300. Epub 2023 Dec 5. PMID: 38264363; PMCID: PMC10800266. https://doi.org/10.1136/bmjnph-2023-000632.
  • Soliman, A. M., H. Yang, E. X. Du, C. Kelley, and C. Winkel. 2016. “The Direct and Indirect Costs Associated with Endometriosis: A Systematic Literature Review.” Human Reproduction 31 (4): 712–722. Epub 2016 Feb 6. PMID: 26851604. https://doi.org/10.1093/humrep/dev335.
  • Temkin, S. M., S. Noursi, J. G. Regensteiner, P. Stratton, and J. A. Clayton. 2022. “Perspectives from Advancing National Institutes of Health Research to Inform and Improve the Health of Women: A Conference Summary.” Obstetrics & Gynecology 140 (1): 10–19. Epub 2022 Jun 7. PMID: 35849451; PMCID: PMC9205296. https://doi.org/10.1097/AOG.0000000000004821.
  • US Dictionary. “Ladies First: Definition, Meaning, and Origin.” Accessed February 25, 2024. Last Updated on November 4, 2023. https://usdictionary.com/idioms/ladies-first/.
  • Viganò, P., M. Casalechi, and M. M. Dolmans. 2024. “European Union Underinvestment in Endometriosis Research.” Journal of Endometriosis and Uterine Disorders 5:100058. https://doi.org/10.1016/j.jeud.2023.100058.
  • Westergaard, D., P. Moseley, F. K. H. Sørup, P. Baldi, and S. Brunak. 2019. “Population-Wide Analysis of Differences in Disease Progression Patterns in Men and Women.” Nature Communications 10 (1): 666. PMID: 30737381; PMCID: PMC6368599. https://doi.org/10.1038/s41467-019-08475-9.
  • The World Health Organization.2021. “6 Priorities for Women and Health Who.” Accessed February 24, 2024. https://www.int/news-room/spotlight/6-priorities-for-women-and-health/.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.