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Addressing Barriers in Research and Health Care for Women Living with Lupus

June 1, 2022 @ 10:00 am - 5:00 pm EDT

Lupus is a chronic autoimmune disease where the body attacks its own tissues, creating widespread inflammation and symptoms throughout the body, often resulting in organ tissue damage – most commonly in the joints, skin, brain, lungs, kidneys and blood vessels. Systemic lupus erythematosus (SLE) is the most common type of lupus, affecting multiple parts of the body, whereas cutaneous lupus erythematosus (CLE) primarily affects the skin. Sometimes individuals can develop a temporary druginduced lupus due to reactions from certain medications, and infants can acquire autoantibodies from a mother with SLE that can result in a rare form of neonatal lupus. An estimated 1.5 million Americans have some form of lupus, and 90% are women between the ages of 15 and 44. Lupus puts women at a greater risk for other chronic conditions, such as heart disease and osteoporosis, and lupus nephritis is a frequent complication resulting from kidney inflammation and damage in patients with SLE. Although women with lupus can safely become pregnant, 20% of pregnant women with lupus develop preeclampsia, and the risk for additional complications increases in women with a history of kidney disease, high blood pressure, and diabetes.

Because the symptoms of lupus mimic other diseases, a majority of patients are initially misdiagnosed, and it can take up to 6 years and seeing 4 or 5 different health care specialists before receiving an accurate diagnosis. Lupus is also more prevalent among women of color – Black women are three times more likely to develop the disease than white women, and Black and Latina women are reported to develop symptoms at younger ages and have more severe symptoms and complications from lupus. There is also no cure for lupus and the limited treatments available are focused on reducing symptom flares, resulting in a significant impact on quality of life.

Furthermore, the economic burden of lupus is far-reaching – with high health care costs, significant out-of-pocket expenses for patients, and loss of productivity in the workplace. Policy solutions are needed to prioritize research investments for the study and treatment of lupus in women, access to quality care and therapeutics, and affordability and coverage with a health equity lens. Addressing gaps in research, clinical, and health care policy, as well as disparities in diagnosis and treatment, would significantly improve the burden on women living with lupus.

The Society for Women’s Health Research (SWHR) convened an interdisciplinary Lupus Working Group of health care providers, researchers, patients and patient advocates, and health care policy leaders for a closed, roundtable meeting in June 2022. During the roundtable, the Working Group discussed scientific and policy issues related to the impact of lupus on women’s health across the lifespan.


June 1, 2022
10:00 am - 5:00 pm EDT
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The objectives of the roundtable are to:

  • Review the state of science and develop strategies to address knowledge gaps and unmet needs related to lupus research, health care, and comorbid conditions in women;
  • Promote science-based health care policies that advocate for comprehensive access and coverage to diagnostics, health care, and clinical trials for women living with lupus;
  • Identify opportunities to reduce disparities and improve access to care and patient outcomes, particularly for high-risk and vulnerable subpopulations of women; and
  • Develop materials to expand education and raise awareness about lupus for women, health care providers, and policy stakeholders.

Roundtable Participants

Anca Askanase, MD, MPH, Professor of Medicine, Columbia University

Isabelle Ayoub, MD, FASN, Assistant Professor of Medicine, The Ohio State University Wexner Medical Center

Irene Blanco, MD, MS, Professor, Department of Medicine, Albert Einstein College of Medicine

Betty Diamond, MD, Director, Institute of Molecular Medicine, The Feinstein Institute for Medical Research

Ayanna C. Dookie, Stand-Up Comedian, Writer, Host of HydroxychloroQUEENZ, a Podcast on Living with Lupus

Carol Greco, PhD, Associate Professor, University of Pittsburgh School of Medicine

Pamela Greenberg, MPP, President and CEO, Association for Behavioral Health and Wellness

Amanda Grimm Wiegrefe, MScHSRA, Director of Regulatory Affairs, American College of Rheumatology

Matt Harman, PharmD, MPH, Vice President, Clincal Solutions, Employers Health Coalition

Beth Laws, MBA, Director, Advocacy and Policy Operations, American Academy of Dermatology Association

Juana Mata, Lupus Patient, Healthcare Advocate, Looms for Lupus

Maria Estela Mata-Carcamo, President, Looms for Lupus

Rosalind Ramsey-Goldman, MD, DrPH, Professor of Medicine, Northwestern University Feinberg School of Medicine

Monica Richey, BSN, MSN, ANP-BC, GNP, Nurse Practitioner, Division of Rheumatology, Northwell Health

Elizabeth Ruth, MPP, Director of Policy, National Association of Chronic Disease Directors

Emily Somers, PhD, ScM, Associate Professor, University of Michigan

Teodora Staeva, PhD, Chief Scientific Officer, Lupus Research Alliance


SWHR’s Lupus Program is supported by educational sponsorships from by Eli Lilly & Company and Aurinia. SWHR maintains editorial control and independence over educational content.