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

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.