As a researcher who has dedicated my career to studying lupus, I cannot overstate the critical importance of clinical trials. Lupus is a complex, multifaceted autoimmune disease that affects different patients in very different ways. By its nature, these qualities make developing effective treatments an immense challenge. Clinical trials provide the only pathway to rigorously test new therapeutic approaches across the diverse lupus population.
Why clinical trials for lupus are key
One key reason clinical trials are so vital for lupus is the lack of approved treatment options currently available. At present, there are only three FDA-approved drugs specifically indicated for lupus—a startlingly low number given how prevalent and devastating this disease can be. The medical field’s limited arsenal leaves many lupus patients struggling with inadequate disease management. The development pipeline for new lupus drugs has also been frustratingly slow. Clearly, more research is desperately needed.
Clinical trials represent the best hope for expediting scientific breakthroughs that could transform lupus care. Through carefully designed studies with representative patient populations, researchers can generate high-quality evidence to demonstrate whether an experimental therapy is safe and effective. Clinical trial data is the key that allows promising new treatments to cross the finish line and earn FDA approval for wider clinical use.
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Beyond simply testing individual drugs, clinical trials also provide an invaluable opportunity to learn more about lupus itself. By looking at real-world patient data, trials can uncover insights into disease mechanisms, genetic factors, environmental influences, and other dynamics underpinning this condition. An enhanced fundamental understanding of lupus biology will be crucial for developing smarter, more targeted treatments down the line.
Black lupus patients need clinical trials
From my perspective, one of the most pressing reasons we need robust lupus clinical trials is the disproportionate impact this disease has on communities of color, especially Black Americans. Statistics show that while Black Americans comprise only around 14 percent of lupus clinical trial participants, we account for an estimated 30 to 43 percent of all lupus cases nationwide. This glaring underrepresentation likely means that current treatments have not been optimized for the specific disease manifestations and genetic profiles associated with lupus in Black American patients.
Until we achieve better inclusion of Black participants that matches the population burden, it will be an uphill battle to develop tailored therapies to address poorer lupus outcomes often seen in this demographic group, such as higher rates of life-threatening complications like kidney disease and cardiovascular issues.
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Achieving racial and ethnic parity in clinical trials is, therefore, a moral and scientific need.
How to join a lupus clinical trial
As a Black woman who has seen firsthand how insidious lupus can be through personal connections, I am deeply committed to increasing minority participation in clinical research. That’s why much of my work with the Lupus Foundation of America’s IMPACT+ program, funded by the Office of Minority Health, is focused on addressing the multifaceted barriers that often deter Black patients from enrolling in trials.
By raising awareness, building community trust, improving accessibility, and empowering patients with education, we can help dismantle obstacles and create a more inclusive research environment. Creative approaches like our Lupus Research Action Network, which trains patients as “popular opinion leaders” who can spark productive dialogues about trials among their peers, are a step in the right direction.
Looking ahead, I firmly believe that reinvigorating the lupus clinical trials pipeline with a renewed commitment to diversity is one of our best chances at finally developing a broader arsenal of safe, effective treatments for all patients. The path will not be easy—it will require sustainable funding, innovative community engagement strategies, and long-term perseverance. But the payoff of accelerating long-awaited solutions that could improve and save countless lives makes it all worthwhile. For lupus patients everywhere, robust clinical trials represent hope for a brighter future.
For more on clinical trials for Black Americans, visit our Clinical Trials Resource Center.
Dr. Joy Buie is a seasoned professional with a rich background in academic research and a passionate commitment to
advancing lupus research in the non-profit sector. She joined the Lupus Foundation of America, a leading volunteer health organization, where she initially served as the Associate Director of Research. Through her dedication and expertise, Joy steadily rose through the ranks and eventually assumed the role of Vice President of Research. In this capacity, she oversees the implementation of large-scale access to care, drug development, clinical trials, and clinical care-focused research programs.
