Advocates Seek Increased Federal Funding to Bridge the Gaps in Lupus Research, Awareness, and EducationMarch 8, 2010
(March 8, 2010 - Washington, DC) – 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.
LFA Board Chair Karen B. Evans (left) and LFA, Greater Washington Chapter CEO Penny Fletcher (right) present Senator Barbara Mikulski with the 2009 Distinguished Leadership Award at LFA's 2009 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, 16th) and James Moran (D-VA, 8th), 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.
From a small beginning 10 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. Advocates who cannot join the lupus advocates on Capitol Hill can still make their voices heard. To learn more about the LFA’s Twelfth Annual Advocacy Day, or how to get involved, visit www.lupus.org/advocacyday.