Over the last decade, the Lupus Foundation of America and its network of tens of thousands of advocates and supporters across the country have stimulated millions of dollars in federal and state funds for lupus research and education programs. We must continue to make our voices heard and educate our elected officials about the impact of lupus on individuals and their families and elevate this disease on the nation’s health care agenda.
Due to the LFA's efforts, Congress has appropriated millions of new dollars to support lupus research and education programs.
In 2011, we:
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Secured through Congress an additional $4.4 million in Fiscal Year 2012 for the National Lupus Patient Registry under the direction of the Centers for Disease Control and Prevention (CDC). The study will provide a more accurate estimate of the number of people with lupus in the United States and the burden of disease on individuals and their families. To date, Congressional support for the study is more than $22.9 million.
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Generated more than 2,500 phone calls, e-mails, and visits to Members of Congress through the Lupus Foundation of America's Thirteenth Annual Advocacy Day. Advocates urged support for increased federal funding to bridge the gaps in lupus research, awareness, and education.
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Stimulated $2.4 million for lupus research through the U.S. Department of Defense (DoD) Congressionally Directed Peer Reviewed Medical Research Program (PRMRP). Since 2005, more than $11.9 million has been awarded to support important lupus research studies.
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Expanded LFA’s advocacy efforts by holding advocacy events in 10 states. In addition, LFA chapters stimulated 37 state governments to designate May as Lupus Awareness Month, and five states to introduce legislation to expand lupus education and awareness initiatives.
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Conducted meetings with key officials at the National Institutes of Health (NIH), Centers for Disease and Control and Prevention (CDC), U.S. Food and Drug Administration (FDA), and with Members of Congress to educate policy makers on the needs of people with lupus. The LFA also recruited individuals with lupus and their family members to testify on the critical need for an arsenal of treatments for lupus during an FDA Advisory Committee hearing on a potential new treatment for lupus.
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Continued to provide support for MAPRx, a coalition of more than 45 patient, family, caregiver, and health professional organizations committed to safeguarding the well-being of people with chronic disease and ensuring access to prescription drugs under Medicare Part D and the private insurance sector.
