Launching into the Future and Building Upon the Past: The Intersection of Autoimmune Disease Awareness and Women’s History Months

By Dr. Janine A. Clayton

Dr. Clayton headshot

Autoimmune Disease Awareness Month

March marks Autoimmune Disease Awareness Month, shedding light on the significant impact of these conditions, particularly on women’s health. Autoimmune diseases disproportionately affect the health of women. While approximately 8% of the U.S. population lives with an autoimmune disease, nearly 80% of those affected are women. 

To comprehensively address autoimmune disease research, the Office of Autoimmune Disease Research (OADR-ORWH) was established in the Office of Research on Women’s Health in 2023. I encourage everyone to visit the webpage for more information, resources, and funding opportunities, and to read the June 2023 Director’s Message for an introduction to OADR-ORWH. In addition, the theme and feature story of the ORWH quarterly publication Women’s Health in Focus at NIH Volume 6, Issue 4 is “NIH Supports Research on Autoimmune Diseases in Women.” I invite you to read this issue to learn more about how autoimmune diseases affect women. 

OADR-ORWH hosted roundtable sessions on February 2, Session 1: Community Roundtable, and February 23, Session 2: Academic Roundtable, to engage with the autoimmune disease community. A third session will occur on May 3, and more details will be available soon. Finally, Victoria Shanmugam, MBBS, MRCP, FACR, CCD (OADR-ORWH Director) and I co-authored a paper Introducing the Office of Autoimmune Disease Research to provide a deeper understanding of the mission and priorities of OADR-ORWH.

Autoimmune Disease Research in the News

In a blog post, NIH Director Monica M. Bertagnolli, M.D., highlighted an article that provides insight into women’s increased susceptibility to autoimmune diseases. The study, partially funded by NIH, uncovers the role of Xist molecules (pronounced “exist”) that are encoded on the X chromosome and transcribed into long-non-coding RNA (lncRNA), as important drivers of sex-biased autoimmunity. Xist lncRNA is expressed only in females to randomly inactivate one of the two X chromosomes to achieve gene dosage compensation. Although many questions remain, understanding the role that Xist molecules play in autoimmune diseases offers new insights for autoimmune disease research. Please register for the upcoming session where experts in the field will discuss and identify opportunities to advance Xist research.

Recently, a team led by scientists from the National Center for Advancing Translational Sciences published research that could open avenues to new therapies for autoimmune diseases in the paper Methotrexate-based PROTACs as DHFR-Specific Chemical Probes. Methotrexate is a common drug to treat rheumatoid arthritis, but the drug can produce harsh side effects. The scientists developed an innovative approach to deliver a less toxic version of the drug to treat more autoimmune diseases. Such creative approaches to reshaping existing drug therapies offer new pathways to treat autoimmune diseases more effectively. For additional autoimmune disease resources and research, please visit the National Institute of Arthritis and Musculoskeletal and Skin Diseases Autoimmune Diseases webpage.

Sex Differences in the Epidemiology of Autoimmune Diseases

The prevalence of many autoimmune diseases in females is well known, and although recent studies suggest that Xist may play a role in sex differences in autoimmune diseases, the complexity underlying sex-biased autoimmunity is not well understood. Understanding sex differences in biologic systems, particularly in health and disease, is a major focus of work supported by ORWH. 

In autoimmune diseases, changes in disease activity across an individual’s lifespan are well documented and have historically been attributed to hormonal changes. However, it is increasingly recognized that immune responses differ in females and males at a cellular level, independent of hormonal changes, and the mechanistic underpinnings of those differences will be crucial to further understanding why autoimmune diseases disproportionately affect females.

8th Annual Vivian W. Pinn Symposium

On May 15, ORWH will host the 8th Annual Vivian W. Pinn Symposium, an event I look forward to each year. The symposium honors the first full-time director of ORWH, Vivian W. Pinn, M.D. The title of this year’s symposium is “Synergy in Science: Innovations in Autoimmune Disease Research and Care,” and the keynote speaker is Jane Buckner, M.D., President and Member, Benaroya Research Institute, and one of the six recently announced EXposome in Autoimmune Disease Collaborating Teams PLANning (EXACT-PLAN) award recipients.

Women’s History Month: Women Who Advocate for Equity, Diversity, and Inclusion

In November 2023, President Joe Biden announced the White House Initiative on Women’s Health Research, which emphasizes women’s health research across government agencies and recognizes the importance of prioritizing women’s health research at the presidential level. To continue the Initiative efforts, First Lady Jill Biden spoke at Morehouse School of Medicine’s 2024 Women’s Heart Healthy Luncheon in Atlanta, and visited Cambridge, Mass., to announce that the Advanced Research Projects Agency for Health (ARPA-H) will provide $100 million in federal funding for research and development into the health of women. 

While the importance of these efforts extends throughout the year, a particularly valuable resource during Women’s History Month is the Pearls of Wisdom online series. Produced and funded by ORWH, these short videos aim to inspire, motivate, and inform women in the beginning or middle stages of their biomedical careers. The series shares the stories of women scientists at NIH and beyond who have overcome barriers and challenges, offering valuable lessons from their journeys.

March 10 was National Women and Girls HIV/AIDS Awareness Day, and on March 21-22 the Office of AIDS Research (OAR) and ORWH hosted the HIV & Women Scientific Workshop. This scientific workshop facilitated interdisciplinary, intersectional, community-centered knowledge exchange on topics pertinent to HIV and womenincluding cisgender, transgender, and gender diverse women and individuals assigned female at birthacross the life course. To access the NIH VideoCast links and learn more about this event, please visit the OAR website.

I am pleased to share the recent publication in The Lancet HIV, Centring the Health of Women Across the HIV Research Continuum. This significant contribution was led by Elizabeth Barr, Ph.D., social and behavioral scientist administrator at ORWH, and co-authored by ORWH and OAR colleagues. We look forward to sharing more insights emerging from the HIV & Women Scientific Workshop this month.

The March 2024 session of Diverse Voices: Intersectionality and the Health of Women is titled “Endometriosis,” which is timely because March is also National Endometriosis Awareness Month. The session features presentations by Drs. Bruce J. Nicholson and Jessica Opoku-Anane. Dr. Nicholson will present a talk titled “Cell Mechanisms of Endometriosis Lesion Formation Provide Clues to a Non-Surgical Diagnostic.” Dr. Opoku-Anane is a co-investigator on a fiscal year 2023 Understudied, Underrepresented, and Underreported (U3) project titled “Leveraging Electronic Medical Records and Machine Learning Approaches to Study Endometriosis in Diverse Populations. Her presentation will highlight her work as part of that effort and her work founding University of California, San Francisco’s Endometriosis Center for Discovery, Innovation, Training and Community Engagement (ENACT). 


At the beginning of March, ORWH released Volume 7, Issue 1 of Women’s Health in Focus at NIH, featuring a captivating exploration of “Global Women’s Health.” I want to highlight the Scientist Spotlight section that showcases an interview with Dr. Bertagnolli. In this engaging discussion, Dr. Bertagnolli shares the challenges she faced as a physician-scientist and leader, articulates strategies to support women in biomedical careers, and imparts valuable advice to early-stage researchers. 

Women’s History Month is a wonderful opportunity to reflect on the accomplishments and advancements in the health of women. Regarding autoimmune disease research, it is important to recognize the intricate connection between women’s health and autoimmune conditions. New discoveries, such as the Xist molecule, present exciting developments in our understanding of autoimmune diseases. However, many questions remain regarding sex differences and autoimmune diseases.

Exciting new developments have occurred since the White House Initiative on Women’s Health Research announcement in November 2023. On March 18, President Biden issued an Executive Order on Advancing Women’s Health Research and Innovation to announce new actions to improve women’s health research by prioritizing investments in such research, integrating women’s health across the federal research portfolio, galvanizing new research on women’s midlife health, and assessing the unmet needs to support women’s health research. President Biden’s historic Executive Order will ensure that women’s health is prioritized at the federal level, and I look forward to sharing more updates in the weeks to come.