Legislative Priorities
Bolster National Institutes of Health Lupus Research Efforts
Federal spending on lupus research has not kept pace with similar diseases. LFA respectfully requests that Congress provide urgently needed new funding to the National Institutes of Health (NIH) in FY2010 to help reduce and prevent the suffering caused by lupus. Specifically, LFA urges Congress to direct NIH to support and bolster lupus research across all relevant Institutes, centers and offices:
- Arthritis and Musculoskeletal and Skin Diseases: Lupus affects the skin, bones, joints, and connective tissue.
- Heart, Lung, and Blood: Lupus attacks the heart, lungs, blood, and blood vessels.
- Allergy and Infectious Diseases: Lupus is a dysfunction of the immune system.
- Diabetes and Digestive and Kidney Diseases: Lupus damages the kidneys, stomach, and intestinal tract.
- Environmental Health Sciences: Lupus disease activity can be triggered by certain environmental factors.
- Neurological Disorders and Stroke: Lupus attacks the blood vessels in the brain, causing seizures, psychosis, and stroke.
- Minority Health and Health Disparities: Nine of ten victims of lupus are women; lupus is more common among women of color, especially among African Americans.
With additional resources -- coupled with an enhanced focus on lupus research -- the NIH and its Institutes, centers and offices will help our nation to make much-needed gains in understanding the causes of lupus and, ultimately, discover a cure for the disease.
National Lupus Patient Registry and Lupus Epidemiological Studies
Lupus Foundation of America (LFA) respectfully requests that Congress provide $5 million in FY2010 for the National Lupus Patient Registry (NLPR) and lupus epidemiological studies funded through the Centers for Disease Control and Prevention (CDC) to sustain current epidemiological efforts and ensure the inclusion of all forms of lupus and all affected populations, particularly Hispanics/Latinos, African Americans, Native Americans, and Asian Americans who are disproportionately at-risk for lupus.
The purpose of the registry is to collect data and conduct lupus epidemiological studies to better understand and measure the burden of the illness, the social and economic impact of the disease, and stimulate additional private investment by industry in the development of new, safe and effective therapies for lupus. Existing epidemiological data on lupus is decades old and no longer reliable. Population-based epidemiological studies of lupus must be conducted at strategically-located sites throughout the nation that will provide accurate data on all forms of lupus (i.e. systemic lupus, primary discoid lupus, drug-induced lupus, neonatal lupus, antiphospholipid antibodies) and the disparity among the various racial and ethnic populations.
OMH/OWH
We also are seeking, $1 million to continue the national lupus education campaign in conjunction with the Office of Minority Health, Office of Women’s Health, and the Surgeon General, directed toward the general public and health professionals who diagnose and treat people with lupus.
DOD, PRMRP
We urge Congress to keep lupus as one of the diseases listed under the Peer Reviewed Medical Research Program (PRMRP) within the Congressionally Directed Medical Research Program in the Fiscal Year 2010 Senate Defense Appropriations bill. As an organization whose constituency was represented in the FY 2009 PRMRP, we very much value this biomedical research program which has led to breakthroughs with great potential to improve the health of our soldiers, sailors, airmen, and Marines. Keeping lupus research funding in FY 2010 will enable this important work to continue.
Surgeon General’s Report
LFA respectfully requests that Congress direct the Secretary of Health and Human Services to issue a Surgeon General’s Report on Lupus.
The Surgeon General's Report on Lupus would be a comprehensive public health study and final document focusing on the gaps in lupus research and education. The Report would identify these gaps and make recommendations related to: (1) federal funding for research on lupus; (2) professional and public lupus awareness and educational programs; (3) approaches to improve the quality of life for individuals with lupus; and, (4) access to quality health care for individuals with lupus. The Report will focus on a wide variety of stakeholders, including policymakers; national, state, and local public health officials; health system leaders; health care professionals; community advocates; and individuals.
Fluorescent Light Bulbs and People with Lupus
Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.