Written by Dr. Grace Wright, MD, PhD, FACR, Consultant Rheumatologist & President of the Association of Women in Rheumatology
Featuring Dr. Joy Buie, PhD, MSCR & VP of Research at the Lupus Foundation of American (LFA)
Featuring Sheraya, Advocate living with Lupus
The Equity Imperative in Lupus Care
For people living with lupus, this chronic autoimmune disease is more than a diagnosis. While the clinical impact of lupus throughout the body can take its toll, the disruptions to daily life, relationships, and long-term health can be just as devastating.1 This is especially true for women of color—in the United States, lupus disproportionately affects Black, Hispanic, Asian, and Native American women, often presenting earlier and more severely in these populations.2-4
Systemic lupus erythematosus (SLE) is among the top 10 causes of death in young women of color aged 15 to 34. This is only further worsened by systemic health disparities.5,6 On average, it takes nearly six years for a person with lupus to receive a correct diagnosis, and during this time, they may suffer irreversible organ damage, particularly to the kidneys, heart and central nervous system.7-9 Not only do they experience the physical manifestations of the disease, but also the mental and financial burden from the exhausting process of getting to diagnosis.10,11 Due to these deep gaps in diagnosis, care and outcomes, it’s more important than ever to recognize and advocate for those bearing the disproportionate burden of this disease.5
“When I went to my new rheumatologist, he said to me, ‘We’re going to look at you like a blank slate. Just tell me your experience.’ We sat at the doctor's office for almost two hours, and I broke down my entire experience to him. He listens to me, not just to listen, but to understand.” – Sheraya, Advocate living with Lupus
Understanding the Gaps
The barriers to equitable lupus care are complex. Socioeconomic and environmental factors can directly shape how lupus impacts people’s lives and further create gaps for patient communities.5 Gaps made wider by environmental factors, such as lack of access to healthy foods, supportive social networks and adequate and culturally competent healthcare, are key factors that can affect lupus outcomes.5,8,9,12 Negative patient-provider interactions and implicit bias in healthcare systems have also created barriers of distrust between patients of color and their healthcare teams.5 Too often patients are accidentally misdiagnosed or their symptoms are dismissed leaving people living with lupus to feel unsafe and anxious.13
Another critical disparity lies in treatment access. Studies show that Black lupus patients are over five times more likely to be treated with chronic corticosteroids, rather than steroid-sparing, evidence-based biologics, due to larger disparities in health insurance coverage and other barriers to access.14 Long-term corticosteroid use has been linked to increased healthcare resource use and increased risk of adverse outcomes, indicating that Black patients with lupus may face increased morbidity and mortality even with current treatments.14 Dr. Joy Buie of the Lupus Foundation of America notes, “It’s not your genetic code per se, that dictates health outcomes, it’s often your zip code. When looking at what is impacting health outcomes, we must first look at the underlying factors that drive disease and provide access to care that works.”
Working to Deliver Equitable Lupus Care
Leading voices in the lupus community are working to close this equity gap. Rheumatologists like me and experts like Dr. Buie are seeking to raise awareness and take action to address the root causes—social, structural, and systemic—that fuel disparities in lupus.
The work Dr. Buie leads through LFA’s Lupus AIM (Addressing health Inequities in Minorities) program outlines the multiple social determinants of health impacting lupus patients and their underlying causes that lead to racial and ethnic disparities in outcomes. Dr. Buie’s hope is that through the research the AIM program has uncovered, solutions can be identified and put into place to support patients on their lupus journey.
Inclusive clinical trials are also essential. Increasing diverse representation ensures that data collection includes populations who are most affected by lupus and that treatments are tested in—and effective for—these high-risk patients. In order to achieve diverse clinical trials, we must work with researchers, community leaders and advocacy organizations to improve clinical trial design so that patients are included throughout the process and have equal access to participate.
Dr. Buie and I also acknowledge the need for culturally competent care. We need more space for doctors and nurses to empathize with patients and see them for who they are. Dr. Buie puts it best, “We need more visionaries within academic medicine who can truly see the person they’re treating before they make a treatment decision.”
A Shared Responsibility to Move Forward
Equitable lupus care is a responsibility that must be driven forward throughout the healthcare system. Clinicians can and should screen more proactively in high-risk populations through biomarker and environmental testing, but they can also listen more intently to their patients’ lived experiences. Broader healthcare teams, including doctors, nurses and community health workers, can increase their clinical and cultural education of lupus and the populations it affects most acutely. Policymakers should not only implement solutions to promote equitable lupus care, but actively address systemic healthcare issues that impact the most vulnerable and at-risk communities. Payers must work with stakeholders to ensure adequate access to innovative treatments and the latest standard of care for lupus. Advocacy organizations and industry partners can collaborate to amplify awareness, fund research and implement real-world solutions. Efforts such as the World Lupus Federation’s Charter to Improve Care for Lupus showcase how collaborative action from healthcare stakeholders can contribute to meaningful improvements in lupus care that address the unmet needs for all patients.15
While we can advocate for these changes, what’s most important is ensuring patients are self-empowered to take control of their patient journey. Dr. Buie notes that, “It is imperative that people have the resources to be able to play an active role in their own care. We need to have the tools in place to empower patients to get the care they need and deserve.”
“I think that people need to be more mindful about the lupus patient experience. Some days I’m going to be slow and some days everything’s going to get done and go smoothly, not every day is going to be the same for me. You shouldn’t have to bring in doctors notes and documentation to get people to listen, understand and work with you.” – Sheraya, Advocate living with Lupus
Despite the challenges we’ve mentioned, there is hope. Shared values like compassion, access and dignity unite us in advocating for better treatment and better outcomes for all lupus patients. Physicians, advocates and patients are working together to change the story—by promoting awareness, culturally competent care and equity-focused solutions. Closing the equity gap in lupus care is not optional. It’s overdue. Earlier intervention, better treatment access, and improved patient support shaped by patients, physicians and advocates can help make equitable lupus care possible.
Dr Wright is a consultant rheumatologist in New York City. She earned her medical and doctorate degrees at the NYU School of Medicine, completed her internship, residency and chief residency in internal medicine and a fellowship in rheumatology at the NYU Medical Center and served as Clinical Associate Professor of Medicine.
In 2014, Dr. Wright founded the Association of Women in Rheumatology (AWIR), which has since grown to over 50 local chapters throughout the United States, as well as a growing number of international members in more than 120 countries. She currently serves as the co-chair of the OMERACT EQUITY Group.
Dr Wright has been recognized as a Woman in Motion by the Arthritis Foundation and as a “Rheumatology Hero” by the American College of Rheumatology. In 2022, she received the American College of Physicians Recognition of “Women in Medicine” award and was also recognized by the Global Healthy Living Foundation as a “Beacon for Better Health”.
Dr. Wright has designed and participated in clinical trials, has been published in multiple peer-reviewed journals, and lectures extensively at national and international conferences on rheumatic diseases, with a special focus on Rheumatology, Immunology, Signaling pathways, and the impact of Equity on Rheumatology healthcare providers and patients.
Joy Buie, PhD, MSCR, RN, is the Vice President of Research at the Lupus Foundation of America. Dr. Buie has dedicated the past four years of her career to serving the lupus community as an agent for change in the non-profit health sector, where she collaborates with academic, industry, and community partners, amplifying patient voices to create actionable research solutions. She leads strategic initiatives to advance patient-focused drug development and expand the Research Accelerated by You, a patient registry, to ensure it is representative of the population living with lupus. With a doctoral degree in Immunology and expertise in vascular disease, Dr. Buie brings a unique blend of clinical insight and scientific rigor to her work. She began her career addressing vascular disparities in lupus, sepsis and stroke through funding from the NIH and the American Heart Association. Today, she co-leads programs like Improving Minority Participation and Awareness in Clinical Trials funded by the Office of Minority Health and Lupus Addressing health Inequities in Minorities (Lupus AIM) to ensure representative lupus trial participation and equal opportunities to achieve optimal health. A champion for ensuring all people living with lupus have improved quality of life.
References
1. Lupus Foundation of America. Impact on Daily Life. Last Accessed May 16, 2025. https://www.lupus.org/understanding-lupus/impact-on-daily-life
2. Centers for Disease Control and Prevention. People with Lupus. Last Accessed May 16, 2025. https://www.cdc.gov/lupus/data-research/index.html
3. Izmirly PM, Parton H, Wang L, et al. Prevalence of Systemic Lupus Erythematosus in the United States: Estimates From a Meta-Analysis of the Centers for Disease Control and Prevention National Lupus Registries. Arthritis Rheumatol. 2021;73(6):991-996.
4. Lupus Foundation of America. Lupus health disparities in the United States: A framework of barriers and facilitators for reducing disease burden in racial and ethnic minorities [executive summary]. https://www.lupus.org/sites/default/files/media/documents/Health-Disparities-Executive-Summary-D3.pdf
5. American College of Rheumatology. Health Disparities in SLE in the United States. https://thelupusinitiative.org/slides/pdf/Health_Disparities_in_SLE_2021_1205.pdf
6. Yen EY, Singh RR. Brief Report: Lupus-An Unrecognized Leading Cause of Death in Young Females: A Population-Based Study Using Nationwide Death Certificates, 2000-2015. Arthritis Rheumatol. 2018;70(8):1251-1255.
7. Lupus Foundation of America. Lupus facts and statistics. Last Accessed May 16, 2025. https://www.lupus.org/resources/lupus-facts-and-statistics
8. Arnaud L, Tektonidou MG. Long-term outcomes in systemic lupus erythematosus: trends over time and major contributors. Rheumatology (Oxford). 2020;59(Suppl5):v29-v38.
9. Lewis MJ, Jawad AS. The effect of ethnicity and genetic ancestry on the epidemiology, clinical features and outcome of systemic lupus erythematosus. Rheumatology (Oxford). 2017;56(suppl_1):i67-i77.
10. Olesińska M, Saletra A. Quality of life in systemic lupus erythematosus and its measurement. Reumatologia. 2018;56(1):45-54. doi:10.5114/reum.2018.74750.
11. Murimi-Worstell IB, Lin DH, Kan H, et al. Healthcare utilization and costs of systemic lupus erythematosus by disease severity in the United States. J Rheumatol. 2021;48(3):385-393. doi:10.3899/jrheum.191187.
12. Feldman CH, Hicks LS, Norton TL, Freeman E, Solomon DH. Assessing the need for improved access to rheumatology care: a survey of Massachusetts community health center medical directors. J Clin Rheumatol. 2013;19(7):361-366.
13. Sloan M, Naughton F, Harwood R, et al. Is it me? The impact of patient-physician interactions on lupus patients' psychological well-being, cognition and health-care-seeking behaviour. Rheumatol Adv Pract. 2020;4(2):rkaa037. doi:10.1093/rap/rkaa037.
14. Sullivan JK, Littlejohn EA. Utilization of glucocorticoids among White and Black patients with systemic lupus erythematosus: Observations from the enrollment visit of a prospective registry. Lupus. 2021;30(14):2298-2303.
15. Mosca M, Andersen J, Wildman P, et al. A charter to improve care for systemic lupus erythematosus. Clin Exp Rheumatol. 2025;43(3):517-525.
