Gaps in lupus research and understanding have profound effect on people living with disease

Mar 9 2010

On March 16, 2010, an anticipated 1,000 advocates will band together for lupus in person and virtually by phone, email, and through social media networks, to share their personal stories with Members of Congress during the Lupus Foundation of America’s, (LFA) Twelfth Annual Advocacy Day.

Advocates’ personal stories will demonstrate how the gaps in lupus research and understanding have a profound effect on the estimated 1.5 million people in the United States who are living with the disease. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) last approved a new drug for lupus. Current treatments have side effects that can be worse than the disease itself. Research has consistently shown that 80 percent of the public knows little or nothing about the disease or its health effects. And surveys of people with lupus show that it takes an average of four years and three different doctor visits before an accurate lupus diagnosis is made.

As part of the day’s events a luncheon will be held to honor Congressmen Tom Rooney (R-FL, 16^th) and James Moran (D-VA, 8^th), where they will be presented with the LFA Distinguished Leadership Award in recognition of their support for people with lupus.

In past years, Congress has responded to advocates’ call for an expanded federal effort to address lupus by: opening new sources of federal agency funding for biomedical research on lupus; providing millions of dollars for the first-ever comprehensive national epidemiological study on lupus; and funding the first-ever national multimedia public service advertising campaign on lupus sponsored by the U.S. Department of Health and Human Services Office on Women’s Health and the Ad Council.

SOURCE Lupus Foundation of America