On Tuesday, March 19, 2013, at a Congressional briefing at the U.S. Capitol Visitors Center in Washington, D.C., America's leading proponents for lupus research gave briefings to members of the U.S. Senate and House of Representatives on the pressing needs of the 1.5 million Americans living with lupus - the prototypical autoimmune disease.
Adrienne Lynch, a lupus patient from New York, introduced a presentation by Dr. Betty Diamond on "The Effect of Health and Racial Disparities in Lupus." Diagnosed with lupus at a young age, Lynch briefly spoke about how the disease has altered her life physically and personally. She left her job as a producer at a major television network to start her own company so she could better balance her work schedule and her doctor's visits. Lynch encouraged attendees to push for policy changes in lupus research and to not give up.
Dr. Betty Diamond, head of the Center for Autoimmune and Muscloskeletal Diseases, The Fernstein Institute for Medical Research, Albert Einstein College of Medicine in New York, emphasized the importance of having multiple levels of outreach and education in African American and Hispanic communities. As these groups are at a greater risk for lupus, Diamond recommended fostering self-efficacy in patients to get more involved in decision making relating to their outcomes, as well as to encourage more minority engagement in clinical trials.