Championing Patient Power in Lupus
Championing Patient Power in Lupus

January 24, 2024

Dr. Stacie Bell came to LRA’s clinical research affiliate Lupus Therapeutics (LT) one year ago to help fulfill the vision of an entire community united to triumph over a complex and confounding disease.  She joined determined to work with the researchers, clinicians, biopharmaceutical companies, and most importantly the people with lupus and their families to overcome challenges that are still impacting their lives.

The challenge has been clear – more individualized treatment options to meet the varied needs of people with lupus and ultimately, to find a cure. The many obstacles standing in the way have also been clear, including imperfect understanding of what causes lupus, continued need to identify more targets for drug development, and inadequate representation in clinical trials by the people disproportionately affected by the disease.


Video: Hear from Stacie on Her One-Year Anniversary


Accelerating New Drug Development
Under Stacie’s guiding leadership, Lupus Therapeutics is working in concert with the foundational research team at the LRA to address these challenges to improve lupus care.  “In partnership with the entire lupus community, we aim to seamlessly progress the research continuum from foundational research funded by the LRA through clinical research supported by Lupus Therapeutics. In addition to traditional late-stage studies, we are now addressing clinical development programs from the very beginning with early-stage trials too.”

As examples, Stacie points to new collaborations with many companies working on the exploding area of cell therapy treatments – an area pioneered by an LRA grant to Dr. Marko Radic funding the cutting-edge discovery that laid the foundation for current trials looking at CAR-T cell therapy for lupus.

Bringing the Entire Lupus Community Together
As both a leader and a listener, Stacie is particularly focused on helping her team bring the broad lupus community together to ensure the voice of people with the disease is central to clinical research – and advancing projects designed to succeed that also reflect patients’ most pressing unmet needs.

The Lupus Clinical Investigators Network (LuCIN) was formed and is managed by Lupus Therapeutics to connect investigators at top research centers throughout North America to progress clinical trials ahead more rapidly and with high quality. Stacie noted that the network has evolved into a truly interactive engaged community, fully embracing people with lupus and other advocates as partners. In fact, the LuCIN annual meeting was reimagined to add members of the lupus community and representatives of our Patient Advocates for Lupus Studies (PALS) program, along with clinical researchers and the organization’s Executive Leadership Team and Board of Directors.  Among the speakers in the formal program, people with lupus voiced the views of their lived experience on research priorities, clinical trial design, engagement and empowerment.

Facilitating Health Equity and Patient Engagement
“I am also very gratified by how Lupus Therapeutics fosters the emphasis on health equity and patient engagement as a foundation and lens for the entire organization and the way we serve the community.”

For example, Project CHANGE, the community-driven approach to address challenges of Black individuals living with lupus and the underrepresentation in clinical trials, is now underway at three pilot sites. “The plan for the next phase is to expand at more sites around the country and to reach additional underrepresented communities needing similar support to achieve improved access to care and representation in clinical research.”

Other efforts intended to overcome healthcare disparities for people with lupus include a Health Equity Working Group within the LuCIN community to influence how clinical trials and clinical care are carried out. Stacie sees much to look forward to in 2024. Her team recently introduced the first-of-its-kind proprietary Lupus Therapeutics Health Care Provider DirectoryTM to assist finding the right health care team and increase access to clinical trials.  Many other new initiatives in the works aim to further integrate patients and their perspectives into clinical research.

In addition, existing initiatives are expanding to involve more people in the community. New sites are joining LuCIN, increasing the availability of clinical trial opportunities in more geographic areas.  Expanding the PALS program to offer more peer-to-peer education by people with lupus who have been in a clinical trial is increasing the number of people, particularly those of color, who feel comfortable considering a clinical trial. Ultimately this greater participation in clinical trials by people most affected by the disease will result in new treatment options that meet individual patient needs more closely.

Source of Inspiration
Stacie’s can-do, will-do spirit is a powerful motivating force at Lupus Therapeutics and Lupus Research Alliance. But it’s reciprocal. The entire lupus community is what inspires Stacie to work her typical 12-hour days.  “It’s the people I work with – our exceptional LRA team, our LuCIN leadership, and the key lupus thought leaders who remain passionate over decades of researching this disease. Hearing from those most impacted by lupus is especially moving – both people living with lupus and those who care for them. The willingness to come together, to bring the best ideas and the best energy – that’s what LRA fundamentally stands for and I think that’s what inspires not just me, but everyone in the community to keep up the momentum until we literally rid the world of lupus with a cure.”

 

 

 

 

 

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