Washington, DC, September 23, 2005 – Members of the U.S. House of Representatives and Congressional staff were updated about the magnitude and impact of lupus, a chronic autoimmune disease estimated to affect 1.5 million Americans, at a congressional briefing held here today. Hosted by Congressman Sherwood Boehlert (R-NY) and presented by the Lupus Research Institute (LRI) National Coalition, the briefing uncovered some of the dismal facts: lupus has no known cause or cure; no new treatments have been approved for lupus in 40 years; and existing treatments are often as toxic and dangerous as the disease itself.
Congressman Boehlert, as Chairman of the House Science Committee, spoke on the direction of biomedical research, the support of Congress for lupus research initiatives, and the need for improved public awareness about the disease.
Outlining the extent of the problem among women, Stuart Kassan, MD, clinical professor of medicine at the University of Colorado Health Sciences Center and Lupus Research Institute board member, pointed out that "Ninety percent of lupus victims are women, and the onset of the disease usually occurs during the prime of life, between the ages of 15 and 44. African American women are three times more likely to get lupus than Caucasian women, and it is also more common among Hispanic/Latina, Asian and American Indian women."
Heterogeneity of Lupus
Dr. Kassan also explained that lupus is the most fundamental example of the immune system gone awry, creating auto-antibodies that attack the body's own normal tissues and vital organs including the kidneys, heart, brain, lungs, blood, skin and joints. "The systemic, multifaceted nature of the disease is the core problem in lupus," Dr. Kassan said. "These multiple manifestations may delay diagnoses, confound clinical studies and alter scientific progress."
Recognizing heterogeneity as the core problem in lupus, last year the Lupus Research Institute National Coalition proposed an initiative to develop a five-year research plan on lupus across multiple institutes of the National Institutes of Health. Language included in the Fiscal Year 2005 Report of the House Appropriations Subcommittee on Labor, Health and Human Services, Education & Related Agencies directed the National Institutes of Health to develop a coordinated trans-institute multidisciplinary research approach for the disease.
Updating attendees on current and future research at the NIH at the congressional briefing were Josiah Wedgwood, MD, PhD of the National Institute of Allergy and Infectious Diseases (NIAID) and Elizabeth Gretz, PhD of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
"Working together, public and private entities must continue to move forward aggressively to increase allocations across all applicable NIH Institutes in order to carry out this essential research necessary to advance our understanding of lupus and develop safe and effective treatments for the disease," said Margaret G. Dowd, president of the Lupus Research Institute.
Other speakers at the congressional briefing were:
Patient Advocate, President/CEO, Lupus Foundation of Mid and Northern New York
President, Alliance for Lupus Research
Joel Schiffenbauer, MD
Director, Food and Drug Administration, Division of Anesthetics,
Analgesics and Rheumatology Products
Frances Ashe-Goins, RN, MPH,
Deputy Director and Director, Division of Policy and Program Development, DHHS Office on Women's Health
The Briefing was supported by unrestricted educational grants from Aspreva Phamaceuticals, Human Genome Sciences and LaJolla Pharmaceutical Company.
About the Lupus Research Institute
Pioneering Discovery to prevent, treat and cure lupus. The Lupus Research Institute (LRI), the country’s only nonprofit organization singularly devoted to novel research in lupus, champions innovation, encourages scientific creativity and risks exploring uncharted territory to bring new scientific solutions to the complex and dangerous autoimmune disease of lupus. Founded by families and shaped by scientists, the Institute mandates sound science and rigorous peer review to uncover and support only the highest ranked novel research. Its bold and proven research strategy places the LRI at the forefront of lupus science as the Institute consistently achieves the breakthrough discoveries, novel insights and solid results that are changing the course of lupus research and bringing new hope to people with lupus nationwide.
The LRI's National Coalition, consisting of state and local lupus organizations from major urban centers (New York, Chicago, Los Angeles) as well as regional and statewide lupus organizations from such diverse parts of the country as California, Colorado, Delaware, Illinois, Indiana, Maine, Maryland, Massachusetts, Michigan, New Hampshire, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and West Virginia, collaborates on lupus awareness and advocacy initiatives.