Lupus Foundation Of America Advocates Say 50 Years Without A New Treatment Is Too Long To Wait

March 2, 2009 at 2:00 pm Leave a comment

November 20, 2008, marked 50 years since the U.S. Food and Drug Administration approved a new therapy for lupus. This sad anniversary has motivated approximately 300 individuals with lupus, their families, and health professionals from across the country to serve as the voices of the estimated 1.5 million people with lupus before Members of the United States Congress on March 3rd when the Lupus Foundation of America (LFA) conducts its Eleventh Annual Advocacy Day in Washington, D.C.

Advocates will share their personal stories and tell Congress why there is a critical need for increased funding for sound biomedical research and education programs.

Their message is more important than ever before. Medications currently prescribed for lupus have unacceptable side effects that are life-diminishing and may actually cause other health problems worse than lupus itself. Side effects of these medications include bone loss and osteoporosis, infertility, infections, joint replacements, cancer, and more.

The medical research effort on lupus has also not kept pace with efforts for other similar chronic, life-threatening diseases. The FDA has not approved a drug for lupus in 50 years, in part, because there has been a lack of robust investment by the federal government. Pharmaceutical and biotechnology companies depend upon the scientific base of knowledge developed by the federal medical research enterprise. In the past the lack of investment by the federal government on lupus has deterred industry from investing in the discovery of new, safer, more tolerable, and effective treatments for individuals with lupus.

Senator Barbara Mikulski (D-MD) will be presented with the Distinguished Leadership Award at the Advocacy Day luncheon on March 3, 2009 at 12:30 p.m. in the Dirksen Senate Building, Room G-50. As a healthcare champion and patient advocate, she is being recognized for her leadership on the Lifespan Respite Care Act, and past support of the Lupus REACH Amendments.

Lupus is an acute and chronic (lifelong) autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually any organ in the body. Its health effects include heart attacks, strokes, seizures, miscarriages, and organ failure. Ninety percent of the people with lupus are women, and it is two to three times more common among African Americans, Hispanics/Latinos, Native Americans, and Asians.

From a small beginning ten years ago with a handful of individuals affected by lupus, the LFA nationwide grassroots network has grown substantially to include tens of thousands of 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 agency 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 the U.S. Department of Health and Human Services Office on Women’s Health for the first-ever national public awareness campaign on lupus produced by the Ad Council.

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 or call toll-free 1-888-38-LUPUS to request a free brochure.

Lupus Foundation of America



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