The Foundation’s ongoing advocacy efforts have results in many successes over the years. A few highlights include:
In 2003, Congress established the National Lupus Patient Registry, the first comprehensive research study to assess the prevalence and incidence of lupus in the United States. This study, being conducted under the direction of the Centers for Disease Control and Prevention (CDC), includes almost all forms of lupus and all population subgroups at high risk for developing the autoimmune disease. Lupus is nine times more common in women and two to three times more common among African Americans, Hispanics/Latinos, Asian Americans and Native Americans.
The National Lupus Patient Registry serves as a conduit for the collection of valid and reliable data for epidemiological studies to better understand and measure the burden of illness, the social and economic impact of the disease, and to stimulate additional private investment by industry in the development of new, safe and effective therapies – and eventually a cure – for lupus.
The current Congressional Lupus Caucus co-chairs, Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Eddie Berniece Johnson (D-TX), work closely with the Foundation to support the first-ever Congressional Lupus Caucus in the U.S. House of Representatives. Through our advocacy efforts, the Caucus continues to serve its key role of providing a forum for members of Congress to actively engage in a dialogue about lupus by working to improve the quality of life for people with lupus, supporting lupus research, and increasing awareness of lupus on Capitol Hill and beyond.
Congressionally Directed Medical Research Program
Funding for lupus research through the Department of Defense (DoD) has been a priority for the Foundation for many years. Beginning in 2003, the Foundation pioneered efforts to create a lupus-specific Congressionally Directed Medical Research Program (CDMRP) through the DoD. Through the Foundation’s testimony before a key Senate committee and the development of a comprehensive evidence-based white paper, Lupus and the Military, we demonstrated to Congress that lupus is a disease that is relevant to our warfighters. That is why we have been fighting tirelessly for a lupus-specific program in the DoD. See our timeline documenting critical efforts to secure a dedicated research line for lupus within the CDMRP.
Peer Reviewed Medical Research Program
In addition to our longstanding efforts to secure a specific lupus-focused research program within the Department of Defense, in Fiscal Year 2005, Foundation efforts resulted in lupus being listed as a disease area eligible for research funding through the Peer Reviewed Medical Research Program (PRMRP). Since that time, more than $17.4 million dollars have been provided to support important lupus research studies.
The Lupus Initiative is a national health provider education program on lupus operated jointly by the Department of Health and Human Services Office of Minority Health, Office on Women’s Health, and the U.S. Surgeon General. The education program is focused on educating minority physicians on the symptoms of lupus and better integration of lupus into medical school curriculum with a goal of improving diagnosis of lupus in an at-risk population.
The Medicare Modernization Act established the Medicare Prescription Drug Program or Part D in 2005. The Lupus Foundation of America is the founder and leads the Medicare Access for Patients Rx or MAPRx Coalition. MAPRx is a coalition of more than 45 national patient advocacy, family, caregiver and health professional organizations working together to ensure people with chronic diseases and disabilities have access to affordable medications under Medicare Part D. MAPRx is the largest national group of chronic disease organizations dedicated to protecting the benefits of Part D and working to guarantee that individuals receive timely and accurate information about the Medicare Part D benefit and accessibility to affordable prescription drugs.
The Affordable Care Act was legislation that was signed into law in March 2010. The legislation was drafted to extend health insurance coverage to many Americans who do not have health insurance and provide protections for people living with lupus and other chronic conditions. A few of the provisions include: coverage for people with pre-existing conditions, no life-time or annual spending caps, children can remain on their parents’ insurance until they are 26, and plans are required to provide certain preventative services free of charge. You can learn more about the protections provided under the Affordable Care Act or you can read the entire legislation here.