We Rally Support to Elevate Lupus Research of the National Healthcare Agenda

The largest sources of lupus research funding are the federal government and the biotechnology and pharmaceutical industries.  With the support of the nation’s largest network of lupus activists, we aggressively work to secure increased investment in research from public and private sources.

Our efforts get results.  Our advocacy efforts have generated an additional $70 million in Congressional appropriations to fund specific lupus research studies. These funds have enabled lupus research studies that otherwise may not have been possible - many of which have the potential to lead to the next important breakthrough.

The Foundation’s ongoing advocacy efforts have results in many successes over the years.  A few highlights include:

National Lupus Patient Registry

In 2003, Congress established the National Lupus Patient Registry, the first comprehensive research study to assess the prevalence and incidence of lupus in the United States. This study, being conducted under the direction of the Centers for Disease Control and Prevention (CDC), includes almost all forms of lupus and all population subgroups at high risk for developing the autoimmune disease.  Lupus is nine times more common in women and two to three times more common among African Americans, Hispanics/Latinos, Asian Americans and Native Americans.

The National Lupus Patient Registry serves as a conduit for the collection of valid and reliable data for epidemiological studies to better understand and measure the burden of illness, the social and economic impact of the disease, and to stimulate additional private investment by industry in the development of new, safe and effective therapies – and eventually a cure – for lupus.

Congressional Lupus Caucus

Working closely with Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA), the Foundation spearheaded efforts to establish the first-ever Congressional Lupus Caucus in the U.S. House of Representatives.  Through our advocacy efforts, the Caucus continues to serve its key role of providing a forum for members of Congress to actively engage in a dialogue about lupus by working to improve the quality of life for people with lupus, supporting lupus research, and increasing awareness of lupus on Capitol Hill and beyond.

Department of Defense

Congressionally Directed Medical Research Program

Funding for lupus research through the Department of Defense (DoD) has been a priority for the Foundation for many years. Beginning in 2003, the Foundation pioneered efforts to create a lupus-specific Congressionally Directed Medical Research Program (CDMRP) through the DoD. 

Through the Foundation’s testimony before a key Senate committee and the development of a comprehensive evidence-based white paper, Lupus and the Military, we demonstrated to Congress that lupus is a disease that is relevant to our warfighters. That is why we have been fighting tirelessly for a lupus-specific program in the DoD. See our timeline documenting critical efforts to secure a dedicated research line for lupus within the CDMRP.

Peer Reviewed Medical Research Program

In addition to our longstanding efforts to secure a specific lupus-focused research program within the Department of Defense, in Fiscal Year 2005, Foundation efforts resulted in lupus being listed as a disease area eligible for research funding through the Peer Reviewed Medical Research Program (PRMRP). Since that time, more than $17.4million dollars have been provided to support important lupus research studies. Given the changing demographics of the military population, there is an ever-increasing prevalence of lupus in military. Recognizing this emerging health issue, the Foundation advocated to include lupus in the PRMRP. These efforts resulted in the opening of an additional source of much-needed funds for lupus research.

The Lupus Initiative

The Lupus Initiative is a national health provider education program on lupus operated jointly by the Department of Health and Human Services Office of Minority Health, Office on Women’s Health, and the U.S. Surgeon General. The education program is focused on educating minority physicians on the symptoms of lupus and better integration of lupus into medical school curriculum with a goal of improving diagnosis of lupus in an at-risk population.