Systemic lupus erythematosus (SLE) is a chronic condition that can exert significant long-term clinical, economic, and humanistic burden on patients and on the health care system. At the recent ACR Convergence 2024 meeting, the burden of SLE was a major topic of interest and discussion.

Following these presentations, featured expert Anca D. Askanase, MD, MPH, was interviewed by Conference Reporter Associate Editor-in-Chief Christopher Ontiveros, PhD. Dr Askanase’s clinical perspectives on these findings are presented here.

There has been a lot of interest in better understanding the incidence and prevalence of SLE to shed light on the true burden of disease. In particular, an effort from the Centers for Disease Control and Prevention (CDC) was initiated to use patient registries to give us a better estimate of the prevalence of SLE with an appropriate sampling of the various demographic groups that are affected by the disease. Based on those data and on a subsequent meta-analysis that was put together by Peter M. Izmirly, MD, and colleagues from the CDC National Lupus Registries, it has become obvious that the overall prevalence of SLE is 72.8 per 100,000 person-years, with a much lower prevalence in men. For every 1 man who is affected by SLE, 9 women are affected. A much higher prevalence of SLE is also found in black and Hispanic patients. Consistent with these results, an abstract by Omer Pamuk, MD, et al presented at ACR Convergence 2024 was focused on state- and county-level social vulnerability in SLE-related mortality, a composite measure based on socioeconomic status, housing and transportation, minority status, and household composition (abstract 0986). The study emphasized that high social vulnerability is a predictor of mortality in patients with SLE.

Over the years, there has been a significant decrease in mortality among people with lupus. Compared with the 1950s when the mortality rate was approximately 50% at 5 years, the mortality rate is now less than 10% at 10 years, yet women with lupus, particularly younger women, die prematurely. Life expectancy is approximately 15 years shorter for women with lupus across demographic groups as compared with men. It is very clear that disparities in access to health care also have a big impact on mortality in SLE, with differences across racial and ethnic groups.

Meta-analysis data from another abstract presented at this year’s ACR meeting suggested that patients with SLE who are of black and indigenous ethnicities, as well as those from other minoritized communities, have higher mortality rates than patients with SLE who are of white ethnicities (abstract 0645). These findings were supported by a separate study by Danielle Dawson, MPH, et al presented at ACR Convergence 2024 that looked at mortality in people with SLE (abstract 0173). As expected, racial, ethnic, and geographic disparities were found in SLE mortality.

Finally, an abstract by Ann E. Clarke, MD, MSc, FRCPC, and colleagues presented at the meeting evaluated the annual indirect costs of SLE as a chronic condition (abstract 2682). What makes this study noteworthy is that the indirect SLE-related costs to society were divided into the distinct categories of opportunity costs from unpaid labor, opportunity costs from paid labor, presenteeism in unpaid labor, presenteeism in paid labor, and absenteeism. The study found that the largest portion of the indirect costs for women was from opportunity costs from unpaid labor as opposed to men, for whom the biggest piece was from the opportunity costs from paid labor. Thus, economic analyses examining disease burden in SLE should incorporate costs resulting from unpaid labor, which are important as they disproportionately affect women.