NEW YORK, Dec. 23, 2011 0 A top legislative priority of the Lupus Research Institute (LRI) — funding for a nationwide lupus education effort for healthcare providers — is included in the Fiscal 2012 omnibus appropriations bill (HR 2055) signed into law today by President Obama after passing in the House of Representatives and the Senate.
Nearly $1 million is allocated to advancing the current federal lupus education initiative begun in 2010, to provide healthcare professionals with comprehensive training to be able to diagnose lupus promptly and treat appropriately. The education program is led by the Office of Minority Health in the federal Department of Health and Human Services in partnership with the U.S. Surgeon General and the Office of Women's Health.
The Lupus Research Institute, with our National Coalition of advocates from the state and local lupus organizations, identified the need for medical education on lupus and led the national effort on Capitol Hill. As a result of the LRI's aggressive advocacy efforts, a major report from the Secretary of Health and Human Services to the U.S. Congress documented the need for a comprehensive national provider health education program to help eliminate the barriers of racial disparities in the early medical diagnosis and treatment of lupus.
"On behalf of the 1.5 million people suffering with lupus in America, we are deeply grateful for the continued support of Congress for providing healthcare professionals with the necessary tools to be able to recognize, diagnose and treat the disease promptly and effectively," said LRI President and CEO Margaret Dowd. "The passage of this Bill signifies that we have succeeded in raising the plight of people suffering with lupus to a national priority. The significant appropriations granted to lupus despite funding cuts in other areas will improve both initial and continuing medical education in this nation in an effort to reduce racial and health disparities in lupus diagnosis and treatment."
Affecting more than 1.5 million Americans, lupus is a chronic, complex and prevalent autoimmune disease, in which the body's immune system creates antibodies that can attack any organ or tissue -- the kidneys, brain, heart, lungs, blood, skin, and joints. Nine out of ten lupus sufferers are women, mostly young women between the ages of 15 to 44, and women of color are especially at risk. There is no one test to diagnose lupus, and because its symptoms can be mistaken for other diseases or conditions, it can take months or years to identify and treat.
The appropriations bill contains additional funding targeted to lupus. The Centers for Disease Control and Prevention is allocated more than $4.4 million to continue the Lupus Patient Registry, a registry study assessing the prevalence and incidence in the United States of lupus among high-risk populations in selected states.
The Defense appropriations section of the bill includes lupus along with 21 other disease conditions in the $50 million Peer Reviewed Medical Research Program, a competitive application research activity run by the Army Medical Research and Materiel Command in Ft. Detrick, MD.
The Lupus Research Institute, Leader in Research Funding
The Lupus Research Institute (LRI), the world's leading private supporter of innovative research in lupus, pioneers discovery and champions scientific creativity in the hunt for solutions to this complex and dangerous autoimmune disease. Founded by families and shaped by leading scientists, the LRI mandates sound science and rigorous peer review to uncover and support only the highest ranked novel research to prevent, treat and cure lupus.
The LRI is dedicated to finding new and safer options for treating the disease by improving the design of clinical studies and promoting broad participation in clinical trials. Visit www.lupusresearchinstitute.org for more information about the Lupus Research Institute.
LRI National Coalition's Commitment to Communities in Need
The LRI's advocacy arm is its National Coalition, a powerful network of state and local lupus organizations united to prevent, treat and cure lupus by advocating for lupus on Capitol Hill. The Coalition unites lupus groups from both coasts and the nation's major urban centers — New York, Chicago, Los Angeles, San Francisco, and Washington, D.C.
Member groups of the LRI National Coalition began their outreach to address racial disparities in lupus by facilitating diagnosis and assisting in patient care in underserved communities over 11 years ago, with the creation of the first neighborhood "Lupus Cooperative" in East Harlem (founded by S.L.E. Lupus Foundation of New York in 1999). Lupus Cooperatives have since been opened in the Bedford Stuyvesant neighborhood of Brooklyn and the South Bronx, both areas with large African-American and Hispanic populations. Recently this successful program was expanded to Los Angeles County.
Over the years, the LRI National Coalition also has created visibility for the needs of underserved populations through awareness building, advocacy, and education programs on the national, state, and local levels. It was behind the first lupus advocacy day of 2010, blanketing Capitol Hill in person and through social networking nationwide with the message to support federal programs for eliminating racial disparities in access to good care and treatment as well as to increase government research funding of lupus.