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Congress Reaffirms Support and Continues Funding For Lupus Research, Education and Patient Registry

Posted Oct 24 2008 5:46am
Congress has again provided funding for critically important lupus research and education programs advocated by the Lupus Foundation of America. President Bush recently signed the Consolidated Security, Disaster Assistance, and Continuing Appropriations Act of 2009 (H.R. 2638). This legislation continues funding for important lupus programs, including basic, clinical and epidemiological research, and public education and awareness initiatives.

These programs include:

Centers for Disease Control and Prevention (CDC)

In 2003, the LFA successfully advocated to have Congress provide funding for the CDC to expand the National Lupus Patient Registry (NLPR). LFA efforts have led Congress to triple funding of the NLPR since its inception. The NLPR will be funded at their current level of $3.122 million through March 6, 2008.

The NLPR is integral to completing the first national epidemiological study to determine the true national incidence and prevalence of lupus among all populations, and for determining the burden of the disease on individuals, families and society. This information also is important to LFAs efforts to stimulate additional investment by pharmaceutical and biotechnology companies to develop safe and effective therapies for lupus. It has been nearly 50 years since a new drug has been approved specifically for lupus and the LFA is supporting several initiatives to address this serious problem.

Department of Health and Human Services Department Office on Women’s Health

The appropriations legislation also continues funding for the Office of Women’s Health for initiatives to improve public awareness of lupus and conduct education projects on lupus. These efforts help to improve the early diagnosis and treatment of lupus, one of the LFA’s highest priorities.

In 2007 the LFA collaborated with the U.S. Department of Health and Human Services Office on Women’s Health and The Advertising Council to develop the first ever national public advertising campaign on lupus. The campaign is a three-year, $2.3 million effort to increase public awareness and understanding of lupus with an emphasis on populations most at risk for developing the disease.

The U.S. Department of Defense Peer Reviewed Medical Research Program (PRMRP).

The recently enacted legislation provides continued funding for the PRMRP through the end of the 2009 fiscal year. Lupus again is one of the diseases eligible to receive this research funding. To date, $5.8 million has been awarded for lupus research, including three studies on lupus biomarkers totaling $3.1 million.

The LFA first proposed a PRMRP research program on lupus biomarkers to members of the House Appropriations Committee in 2004. Validated biomarkers for lupus are necessary to develop screening tools to detect undiagnosed cases of lupus and improve monitoring of response to treatment. Recognizing the relevance of lupus to thousands of military personnel and their dependents, Congress responded by authorizing PRMRP funding for lupus studies starting in Fiscal Year 2005. The LFA has continued to advocate for the program each year through its public policy initiatives.

LFA Advocacy Efforts Improve Quality of Life for People affected by Lupus

Funding for lupus research and education programs supported through federal agencies has been a long-recognized priority for LFA advocacy efforts. “Each year, LFA brings more than 350 lupus advocates to Washington, including people with lupus, their families, physicians, and lupus researchers, to advocate for more funding for lupus research and education programs,” said Sandra Raymond, LFA President and CEO.

“LFA-led advocacy initiatives have opened new sources of much-needed funds to support research on lupus, provide for improved government services for those living with lupus, and increase public awareness to improve early diagnosis and treatment of lupus. The LFA will continue to work with congressional and administrative leaders to further expand federal support for lupus initiatives so people with lupus can have hope that more effective treatments and, ultimately, a cure can be found.”
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