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Bridging the Gap in Lupus Care and Clinical Research: A Call to Action for Virginia Rheumatologists
Special Contribution from the National Minority Quality Forum (NMQF)
Christina Edwards, MHA
Director, Clinical Trials
Center for Clinical & Social Research & NMQF
The burden of lupus in the United States continues to expose one of the most persistent inequities in healthcare: who has access to quality care, trusted information, and meaningful opportunities to participate in research. For Black and Hispanic communities in particular, lupus is not only more prevalent, but often more severe, more difficult to diagnose, and associated with worse long-term outcomes. Yet despite carrying a disproportionate burden of disease, these same communities remain significantly underrepresented in clinical trials that shape the future of lupus treatment and care.
The National Minority Quality Forum (NMQF) is a data-driven, mission-focused organization dedicated to advancing health equity at the intersection of policy, advocacy, education, and clinical research. NMQF works to ensure that medically underserved populations are not left behind in research, innovation, or care delivery. In rheumatology, these disparities have become increasingly urgent, as patients from historically underserved communities continue to face barriers to timely diagnosis, specialty care, and participation in clinical research.
Virginia's demographic composition makes this issue particularly pressing. The Commonwealth is home to a substantial and growing Black population, concentrated in urban corridors like Northern Virginia, Richmond, Hampton Roads, and the Roanoke Valley, who face documented disparities in lupus prevalence, diagnostic delay, and access to specialty care. Many of these communities are also geographically removed from academic medical centers where the majority of lupus clinical trials have historically been conducted. For rheumatologists practicing across Virginia, this gap between where disease burden is highest and where research access is greatest is not an abstract policy concern, it is present in your waiting rooms every day.
NMQF's Center for Clinical and Social Research (CCSR) leads the organization's efforts to advance equitable participation in clinical research through the Alliance for Representative Clinical Trials (ARC). ARC is designed to expand access to clinical trials and strengthen research infrastructure in underserved communities, ensuring that clinical research reflects the diversity of the populations most affected by disease. Currently, ARC includes more than 15 research-naïve clinical practices that have been prepared to enter the clinical research ecosystem through a comprehensive capacity-building model.
NMQF is currently focused on reducing disparities in lupus care and clinical trial participation across the District of Columbia, Maryland, and Virginia, making Virginia rheumatology practices not just potential supporters of this work, but natural partners in it.
Black women are diagnosed with lupus at rates two to three times higher than white women, tend to develop the disease earlier, experience more severe organ involvement, and face worse outcomes.¹ Despite this, they remain among the most underrepresented populations in lupus clinical trials. That is not a coincidence. It is the compounded result of systemic barriers: geographic distance from research sites, mistrust of medical institutions, lack of culturally relevant communication, and a pipeline of investigators who rarely look like the patients they are studying. Virginia rheumatologists are uniquely positioned to help dismantle each of these barriers.
NMQF has focused heavily on establishing and strengthening trusted community partnerships to improve lupus awareness and engagement across the DMV region. Churches, barbershops, and salons are active partners in this work, spaces that have long served as trusted centers of information, advocacy, and support within Black communities. By equipping faith leaders and community ambassadors with culturally relevant lupus education materials, we are creating opportunities for conversations that feel accessible, authentic, and actionable.
We have also developed a Lupus Clinical Trial Education Toolkit and digital portal integrated with a live ClinicalTrials.gov database. The goal is straightforward: simplify access to lupus trial information for both patients and providers while ensuring materials are culturally relevant and easy to navigate. Virginia-based rheumatologists can incorporate these tools directly into their patient education workflows at no cost.
Opportunities for VSR Members to Get Involved
We recognize that awareness alone is not enough if patients lack access to clinical research opportunities. Improving lupus outcomes requires more than new therapies, it requires trust, infrastructure, and clinicians equipped to connect patients with research. Too often, low clinical trial participation is attributed to patient hesitancy without addressing the structural barriers that limit access, including a lack of research-ready sites, limited clinician experience in research, and insufficient culturally relevant education. Using the proven ARC model, we address these barriers from both the community and provider perspectives.
NMQF is actively recruiting research-naïve lupus-treating clinicians and practices across Virginia interested in becoming investigators in lupus clinical trials. This is not a commitment reserved for large academic centers. Community-based rheumatology practices, even those that have never participated in research, are exactly the practices we are seeking. Through feasibility assessments, infrastructure development, and mentorship, participating clinics receive guidance on building sustainable research capacity suited to their size and setting.
Already overextended clinicians are not being asked to become research experts overnight. It is about creating practical pathways for interested providers to receive mentorship, operational support, and tools that make participation feasible.
A Call to Action for Rheumatologists Across the Commonwealth
There is a significant opportunity for Virginia rheumatologists to help redefine what equitable lupus care looks like moving forward. Not just by supporting the principle of health equity in research, but by taking concrete steps within your practices and communities. We are inviting VSR members to:
- Discuss clinical trials as a standard part of care conversations rather than a last resort, particularly with patients who carry the highest disease burden.
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Use and share the Lupus Clinical Trial Education Toolkit with patients and staff, recognizing that provider-level awareness is the first step toward patient-level access.
- Identify structural barriers within your own practice that may limit diverse patient participation in research, e.g. geography, language access, appointment availability, or referral patterns.
- Partner with community organizations already doing trusted grassroots engagement in your region, including faith communities and local health advocates.
- Advocate within your professional networks for more lupus trial sites to be located in community-based settings rather than exclusively at academic centers.
- If not interested in conducting clinical trials yourself, refer your patients to locations where studies are available.
Health equity in rheumatology will not be achieved through intention alone. It requires investment, collaboration, and a willingness to rethink traditional models of clinical research engagement. Virginia rheumatologists do not need to wait for a federal mandate or a large grant to begin making a difference, the infrastructure, the tools, and the partnership are available now.
The future of lupus care depends not only on scientific breakthroughs, but on ensuring that the patients most affected by the disease are represented in the research, connected to resources, and supported by systems designed to include them. In Virginia, that work starts with you.
¹ Izmirly PM, Parton H, Wang L, McCune WJ, Lim SS, Drenkard C, Ferucci ED, Dall'Era M, Gordon C, Helmick CG, Somers EC. 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 Jun;73(6):991-996.
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