Dr. Jessica Williams, MD, MPH, Assistant Professor of Medicine Division of Rheumatology, Washington University School of Medicine and Medical Advisor for Lupus Therapeutics (the research arm for the Lupus Research Alliance) has been deeply engaged in advancing lupus research, especially focusing on overcoming racial disparities in clinical trials. With lupus affecting primarily women and disproportionately impacting racial and ethnic minority groups, Dr. Williams’ work is crucial to developing a more inclusive, representative, and effective healthcare response to this chronic illness.
BlackDoctor.org spoke with Dr. Williams to learn more about her work, the challenges of improving clinical trial diversity, and the importance of initiatives like the PALS (Patient Advocates for Lupus Studies) program in bridging the gap in representation for people of color in lupus research.
Barriers to Diagnosis
Lupus can affect multiple parts of the body, leading to a broad spectrum of symptoms.
“Lupus is a chronic condition, manageable but without a cure, so it often requires ongoing care and multiple medications. Patients may need to see several specialists—rheumatologists, nephrologists, dermatologists, and sometimes cardiologists—depending on how lupus affects their body, which can be challenging to coordinate,” Dr. Williams notes.
Additionally, the condition can also vary greatly, with periods of remission and flare-ups, which adds to the difficulty in diagnosis.
“It may take years for some patients to be accurately diagnosed due to this pattern, and during flares, the condition can be incredibly debilitating.”
Many lupus patients also struggle with multiple types of pain, including inflammatory pain directly caused by the autoimmune condition, and non-inflammatory pain, which is often more challenging to treat.
“It can be difficult for patients and even healthcare teams to distinguish between the two types of pain and ensure that both are properly addressed,” Dr. Williams shares. “Pain is a significant issue for lupus patients since the disease can impact joints, muscles, and internal organs, all of which can cause pain. Additionally, patients frequently mention the fatigue associated with lupus, which can be extremely debilitating. Another common issue is brain fog, where patients feel mentally cloudy or confused, which can be very frustrating and affect daily functioning.”
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A Lack of Representation in Clinical Trials
“Lupus is an autoimmune condition that predominantly affects women of childbearing age, and we see it having a greater impact on African American, Hispanic, Asian, and Native American patients. Lupus not only poses severe health risks, like kidney disease, which may lead to kidney transplants, but it also carries higher mortality rates among minority patients. Despite this disproportionate impact, clinical trial participation is alarmingly low for these groups, which restricts the effectiveness of treatments for diverse populations,” Dr. Williams adds.
Key Challenges
- Underrepresentation in Trials: Although Black Americans comprise nearly half of lupus patients in the U.S., they represent only about 14 percent of clinical trial participants.
- Mistrust and Lack of Awareness: Historical injustices, such as the Tuskegee Syphilis Study, continue to foster mistrust in medical research. Many patients fear the potential consequences of participating in trials, are uncertain of their rights and are unaware that they can withdraw at any time.
- Practical Barriers: Clinical trials often require regular visits and time commitments that are challenging for many patients, particularly those with limited access to transportation, time, or resources.
“I believe there are a few key barriers here. First, a general lack of awareness and education about clinical trials within these communities. We did a study with about 700 predominantly African American patients in the Southeastern U.S. and found that many didn’t fully understand what a clinical trial entails,” Dr. Williams notes.
Another issue is that minority patients may not be invited to participate in trials as frequently as others. “This falls on the medical community to make sure all eligible patients are informed and encouraged to consider participation,” Dr. Williams adds.
Building Awareness and Trust
The PALS program, a flagship initiative of Lupus Therapeutics, is specifically designed to address the underrepresentation of minority patients in clinical trials. It trains individuals who have lupus and have previously participated in clinical research to act as peer mentors for those considering trial participation.
“Initially piloted at five lupus clinical trial sites across the U.S., PALS has already shown promise in increasing awareness and willingness to participate in trials, so the program is now expanding to other sites nationwide,” Dr. Williams says.
The Importance of Diversity in Research and Rheumatology
Given the low number of rheumatologists from minority backgrounds, the Lupus Research Alliance has also introduced the Diversity in Lupus Research Award.
This grant provides up to $600,000 in funding to support minority researchers in rheumatology, fostering a more inclusive approach to lupus research and treatment development. As a recent recipient, this award has supported Dr. Williams in her own research.
“That’s a major issue. Across rheumatology, only a tiny fraction—less than one percent—of practitioners are African American, and an even smaller percentage are involved in research. This lack of representation matters because studies have shown that trust levels are higher when patients share a similar background with their doctors. Researchers from diverse backgrounds are also more likely to work in underserved areas, addressing disparities head-on,” Dr. Williams adds. “I was honored to receive one of these awards in 2023, and it has provided crucial resources and protected time to focus on my research. It’s a step in the right direction to build a pipeline of diverse rheumatology researchers.”
Recently, Dr. Williams joined the Division of Rheumatology at Washington University in Missouri, where she is continuing the work she was previously doing at Emory University. In Missouri, about one-third of the population live in rural areas that are often medically underserved with limited access to rheumatologists or research sites.
“My goal is to examine how lupus impacts patients in these regions—specifically, their health outcomes, their perceptions of research, and any barriers they face in participating in studies. I’m also interested in exploring if unique social and environmental factors in rural areas might influence lupus development and progression, such as end-stage kidney disease or hospitalizations. I’m excited to continue my work in health equity research with this new focus in St. Louis,” she says.
In collaboration with Lupus Therapeutics, Dr. Williams is also involved in Project CHANGE, an outreach initiative aimed at promoting clinical trial awareness in communities with low participation rates, including cities like Atlanta and Philadelphia. Project CHANGE partners with community leaders to create educational platforms, making clinical trials more accessible and less intimidating to patients of color.
Dr. Williams’ Final Advice
1. Track Your Symptoms Regularly
“I encourage any patient who has symptoms or a lupus diagnosis to keep track of when they’re feeling unwell. Taking notes and photos of any visible symptoms, like rashes or swollen joints, can be extremely helpful when sharing information with your doctor. I’ve even been able to diagnose lupus based on photos of symptoms taken by patients, which may not have been present during a visit,” Dr. Williams advises.
2. Consider Participating in Clinical Trials
“It’s crucial for African Americans and other underrepresented minorities to participate. Clinical trials are essential for advancing treatment and ultimately finding a cure, so broad participation is vital. This ensures that new treatments are effective across all populations and that study participants represent the broader community of lupus patients. Increasing diversity in trials is something many in the field are committed to addressing,” Dr. Williams concludes.
