NEW YORK, NY – February 16, 2012. The Lupus Research Institute (LRI) and its National Coalition of lupus patient advocacy organizations congratulate U.S. Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) on co-chairing a new Congressional Lupus Caucus to apprise Members of Congress of the critical issues impacting lupus sufferers.
“These Members of Congress are to be applauded for coming together on a bipartisan basis to raise awareness of the tremendous needs in lupus, said Margaret Dowd, LRI President and CEO. “The LRI is particularly appreciative, having worked long and hard with Congress to highlight the need for greater understanding of the complexities of the disease. As the key stakeholder uniquely funding the innovative novel research driving new treatments and a cure, we welcome the opportunity to join this national effort on behalf of lupus patients throughout the country.”
Currently there are few therapeutic options for this often misdiagnosed and unpredictable autoimmune disease. Lupus affects 1.5 million Americans, 90 percent of whom are women, primarily in their childbearing years. Women of color are at greatest risk but older women, men and children can also be affected.
Fighting Racial Disparities in Lupus
Building on a 15-year history of leadership in fighting racial disparities in lupus, the LRI Coalition network representing patient voices of America’s major urban centers, remains committed to meeting the needs of underserved and vulnerable lupus populations for improved awareness, diagnosis, treatment and care.
In 2008, the LRI launched an innovative lupus advocacy program championing professional education to ensure providers on the front lines can diagnose and treat this devastating disease, particularly among minorities where it hits hardest. LRI convinced Congress to initiate a nationwide education program led by the Federal Offices of Minority Health, Woman’s Health and the Surgeon General. To date the LRI Coalition has successfully advocated for $4.6 million in federal funding to advance this effort, work that became the national Lupus Initiative. Its objective is to permanently improve diagnosis and treatment, and to alleviate disparities in healthcare affecting lupus patients.
“As the signature advocacy program of the LRI Coalition, the Lupus Initiative is a model of successful collaboration between the lupus community, offices of the Federal government and the U.S. Congress,” said Dowd. “Collaboration at all levels of the lupus community can make the Congressional Caucus equally effective in ensuring that the long-overlooked disease of lupus becomes an increasingly important national health priority.”
Read more about the Caucus:
LRI: Leading Science and Service in Lupus
The Lupus Research Institute (LRI), the world’s leading private supporter of innovative research in lupus, pioneers discovery and champions the scientific creativity that is bringing new solutions to this complex and dangerous autoimmune disease. The LRI Coalition of patient advocacy organizations leads nationwide outreach, service and support to alleviate patient suffering while advancing the cure.