Lupus Advocates Seek Increased Federal Response to Life-Changing, Life-Threatening Disease Affecting 1.5 Million Americans

Date : 02/29/2008 @ 9:32PM
Source : PR Newswire
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Lupus Advocates Seek Increased Federal Response to Life-Changing, Life-Threatening Disease Affecting 1.5 Million Americans

WASHINGTON, Feb. 29 /PRNewswire-USNewswire/ -- Increased funding for sound biomedical research and education programs is critical to finding the causes of and eventually a cure for lupus and for improving the diagnosis and treatment of the life-diminishing and life-threatening disease. Approximately 300 individuals with lupus, their families, and health professionals from 37 states will deliver this message to 200 Members of the United States Congress on March 11 when the Lupus Foundation of America (LFA) conducts its Tenth Annual Advocacy Day in Washington, DC.

More than 1.5 million Americans have a form of lupus, an unbalanced immune system that can be destructive to any major organ or tissue in the body. Lupus can be very unpredictable and is potentially fatal, yet no satisfactory treatment or cure exists. It has been nearly 50 years since the U.S. Food and Drug Administration approved a new therapy for lupus.

As the foremost national nonprofit voluntary health organization dedicated to lupus, the LFA has for the past decade brought individuals affected by lupus and health professionals to Capitol Hill to advocate for increased government support for lupus research and education programs.

LFA advocates successfully stimulated a number of programs which have greatly expanded federal efforts to address lupus. From a small beginning ten years ago, the LFA nationwide grassroots network has grown substantially to approximately 80,000 lupus advocates, supporters and volunteers from every state in the country. These advocates send letters and email messages, make telephone calls, and visit congressional offices to educate elected officials on the impact of lupus.

LFA advocates have been effective in advancing lupus research and education programs conducted by the federal government, including:

-- 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.

During LFA's 2008 Advocacy Day, advocates will urge lawmakers to support the Lupus Research, Education, Awareness, Communications, and Healthcare (REACH) Amendments Act (H.R. 1192 and S. 1359). The legislation, introduced by Rep. Kendrick Meek (D-FL) and Rep. Ileana Ros-Lehtinen (R-FL) in the House and Senator Patty Murray (D-WA) and Senator Robert Bennett (R-UT) in the Senate, when enacted will further federal efforts to combat lupus, address gaps in research, and heighten awareness of lupus symptoms and health effects among the public and health professionals.

About the Lupus Foundation of America

The LFA is the foremost national nonprofit voluntary health organization dedicated 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 LFA has a nationwide network of nearly 300 chapters and support groups and operates programs of research, education and advocacy. For more information about the lupus and LFA, go online to http://www.lupus.org/ or call toll-free 1-888-38-LUPUS to request a free brochure.

DATASOURCE: Lupus Foundation of America

CONTACT: Duane Peters of Lupus Foundation of America,

+1-202-349-1145,

Web site: http://www.lupus.org/

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