NEW YORK, NY – September 22, 2011 – The S.L.E. Lupus Foundation and Lupus Research Institute (LRI) commend the entire U.S. Senate Appropriations Committee for recognizing the urgent need for greater health education in lupus with the adoption of its fiscal 2012 Labor, Health and Human Services and Education appropriations bill September 21. The Senate legislation allocates $1 million to continue the current federal lupus education initiative, aimed at alleviating racial/health disparities by providing healthcare professionals with state-of-the-art training to recognize, diagnose and treat lupus appropriately.
Members of the Senate and House appropriations committees will negotiate a final conference committee bill later this fall to set the ultimate funding levels for 2012.
The language of the Senate bill confirms the pressing need for improved lupus diagnosis and treatment: “The Committee recommendation includes $1,000,000 to continue the national health education program on lupus for healthcare providers. The Committee notes that this debilitating autoimmune disease is up to three times more common among African Americans, Hispanics and Native Americans and affects over 1.5 million persons, 90 percent of whom are women. The Committee continues to support this important national education effort to engage healthcare providers, educators and schools of health professions in working together to improve lupus diagnosis and treatment through education.”
“As a 40-year advocate for lupus patients, the S.L.E. Lupus Foundation and Lupus Research Institute thank Senator Frank Lautenberg (D-NJ) the lead champion for this effort, as well as Labor-HHS Subcommittee Chairman Tom Harkin (D-IA) and Ranking Member Richard Shelby (R-AL) for effectively impressing upon the Senate Appropriations Committee the urgent need for lupus education,” noted CEO Margaret Dowd. “On behalf of the nation’s lupus community, we are grateful to the Committee for recognizing the severity of the problem and providing the necessary funding to address it. Raising awareness of lupus among the full range of healthcare providers will also help accelerate research into treatment and ultimately the cure.”
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 healthcare professional training and resource development this bill will afford aims to speed up lupus detection to ensure that patients receive proper treatment as early as possible for the best possible outcomes.
The bill also recommends $4.462 million in FY 2012 funding to support the Centers for Disease Control and Prevention National Lupus Patient Registry “to continue and expand the program to address epidemiological gaps among Hispanics/Latinos, Asian Americans and Native Americans. In addition, a cohort of registry patients will be established to further study long-term outcomes, socio-economic burdens and mortality associated with the disease.”