Foundation Representatives Help Launch New $5M Lupus Research Program at Department of Defense
Representatives of the Lupus Foundation of America (Foundation) helped kickoff the new Lupus Research Program at the U.S. Department of Defense (DoD) last week during the program’s first stakeholder and vision setting meeting. The meeting included leaders from lupus organizations and the research and patient communities who provided input to DoD officials on the strategic direction and priorities for this new dedicated funding stream for lupus research, for which Congress allocated $5 million in funding this year.
Sandra C. Raymond, Chief Executive Officer of the Foundation, began the stakeholders’ presentations by providing an overview of the Foundation’s longstanding efforts to establish a lupus-specific program at the DoD, which already has provided nearly $20 million in funding for lupus research.
During the morning session, lupus stakeholders presented their recommendations for the Lupus Research Program’s priorities. The Foundation presented five recommendations including validation of predictive biomarkers, which would help identify people at risk for developing lupus, and studies to better understand the heterogeneity of lupus, which will benefit clinical research studies in lupus.
Funding for lupus research at the DoD has been a priority for the Foundation for more than a decade and the Foundation’s advocacy has helped make the program possible. After launching a campaign to create a lupus program at DoD in the early 2000’s, the Foundation:
testified in support of establishing a program at DoD during key U.S. Senate Committee hearings;
developed a comprehensive evidence-based white paper, Lupus and the Military, which showed the connection between lupus and military service;
convened multiple meetings with DoD officials to help direct funding to lupus research; and led the creation of the Congressional Lupus Caucus, which has helped to champion this program on Capitol Hill.
The Foundation’s advocacy efforts were rewarded when the President formally signed into law the legislation creating the Lupus Research Program earlier this year.
The Lupus Research Program guarantees that DoD funds not only are dedicated to lupus research, but also are prioritized to fund the most important areas of lupus research which can have the most immediate impacts on patient care, and provides direction for how those funds are spent – how the dollars can make the most difference as soon as possible for people living with lupus.
The Congressionally Directed Medical Research Program: Past and Future
Since 2005, at least 20 lupus research studies have been funded through the DoD CDMRP. These studies have contributed toward our understanding of the causes and progression of lupus, including one study that led to the commercialization of the first new confirmatory diagnostic test for lupus.
The Foundation is seeking to double congressional appropriations for the program in the next fiscal years’ budget.
Patient Advocates and Foundation Leaders to Influence the Use of These New Research Funds
Cindy Coney, lupus spokesperson, patient advocate and former chair of the Foundation’s board of directors also serves on the programmatic committee. Cindy presented details about her personal battles with lupus and explained how lupus has impacted not only herself but her spouse and children. Cindy described the desire of all people with lupus to have available therapies that can put lupus into permanent remission and allow them to return to the quality of life they had before developing lupus.
Two of the Foundation’s medical advisors are serving on the programmatic panel, which sets the direction for the programs and helps to make funding decisions. They include Dr. Gary Gilkeson, Professor of Medicine and Associate Dean for Faculty Affairs and Faculty Development at the Medical University of South Carolina. Dr. Gilkeson also chairs the Foundations Medical-Scientific Advisory Council. The panel also includes Dr. Susan Manzi, Chair, Department of Medicine at the Allegheny Health Network in Pittsburgh, who serves as the Foundation’s medical director.
Representatives of the Foundation stressed that the program must focus on research that can make the biggest impact on those living with lupus as soon as possible and that it should not simply mimic programs conducted by the National Institutes of Health (NIH).
The DoD will issue a ‘request for proposals,’ in October. Following a series of peer-reviews of the proposals, the DoD expects to announce the program’s first lupus research grant awards sometime in April of 2018.