Lupus Advocates Seek Increased Federal Response to Life-Changing, Life-Threatening Disease Affecting 1.5 Million Americans
More than 1.5 million Americans have a form of lupus, an unbalanced immunesystem that can be destructive to any major organ or tissue in the body.Lupus can be very unpredictable and is potentially fatal, yet no satisfactorytreatment or cure exists. It has been nearly 50 years since the U.S. Food andDrug Administration approved a new therapy for lupus.
As the foremost national nonprofit voluntary health organization dedicatedto lupus, the LFA has for the past decade brought individuals affected bylupus and health professionals to Capitol Hill to advocate for increasedgovernment support for lupus research and education programs.
LFA advocates successfully stimulated a number of programs which havegreatly expanded federal efforts to address lupus. From a small beginning tenyears ago, the LFA nationwide grassroots network has grown substantially toapproximately 80,000 lupus advocates, supporters and volunteers from everystate in the country. These advocates send letters and email messages, maketelephone calls, and visit congressional offices to educate elected officialson the impact of lupus.
LFA advocates have been effective in advancing lupus research andeducation programs conducted by the federal government, including:
During LFA's 2008 Advocacy Day, advocates will urge lawmakers to supportthe Lupus Research, Education, Awareness, Communications, and Healthcare(REACH) Amendments Act (H.R. 1192 and S. 1359). The legislation, introducedby Rep. Kendrick Meek (D-FL) and Rep. Ileana Ros-Lehtinen (R-FL) in the Houseand Senator Patty Murray (D-WA) and Senator Robert Bennett (R-UT) in theSenate, when enacted will further federal efforts to combat lupus, addressgaps in research, and heighten awareness of lupus symptoms and health effectsamong the public and health professionals.
About the Lupus Foundation of America
The LFA is the foremost national nonprofit voluntary health organizationdedicated to finding the causes of and cure for lupus, and providing support,services and hope to all people affected by lupus. Founded in 1977, the LFAhas a nationwide network of nearly 300 chapters and support groups andoperates programs of research, education and advocacy. For more informationabout the lupus and LFA, go online to www.lupus.org or call toll-free1-888-38-LUPUS to request a free brochure.-- coordinating efforts among the various federal agencies with an interest in lupus; -- securing millions of dollars for the first-ever comprehensive national epidemiological study on lupus; -- opening new sources of federal funding for biomedical research on lupus; -- obtaining changes in draft Social Security Disability regulations which will enable more people disabled by lupus to receive benefits; -- securing changes to regulations governing the Medicare Part D Prescription Drug Benefit to pay for prescription drugs required to treat lupus; -- partnering with various agencies of the U.S. Department of Health and Human Services to increase public recognition of the serious consequences of lupus.
SOURCE Lupus Foundation of America
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