Jul. 18, 2017

2017 National Policy Summit Highlights

Last month, Lupus Foundation of America advocates from across the country converged on Capitol Hill to bring the voice of people with lupus to the doorsteps of our elected representatives.  The 2017 National Policy Summit was a two-day affair consisting of speaker panels, discussions, and a Hill Day in which activists physically visited 200 Congressional offices and our virtual efforts resulted in over 5,500 emails reaching nearly 100 U.S. Senators and nearly 400 U.S. Representatives in a single day. People with lupus were on the front lines sharing their stories with Members of Congress in an effort to reveal the true nature of the disease and urge their elected officials to increase funding for lupus research and ensure access to quality healthcare.

The Pacific Northwest was well represented by both staff and committed volunteer advocates who made the cross-country journey to visit four House of Representatives’ offices and meet with both Senator Murray and Senator Cantwell.  One activist from the Pacific Northwest, Cayla Ravancho, raved about her recent experience saying, “connecting coast to coast with other people who have lupus, meeting hundreds of dedicated and motivated people all sharing the same vision, and being inspired by other advocates’ stories and experiences” was the most memorable part of the trip.

The Lupus Foundation of America has led the effort to establish a lupus-specific research program at the Department of Defense (DoD) and, just two days after advocates stormed the halls of Capitol Hill, we got word that the U.S. House of Representatives Appropriations Committee is set to dedicate another $5 million this year to the DoD Lupus Research Program. In addition to legislative victories, this year’s Summit also brought to light what the Foundation is doing to amplify the voice of the lupus community with a new patient-focused drug development survey in which experiences about symptoms and treatment results are compiled and shared with key decision makers like the Food and Drug Administration.  We encourage everyone to participate in this study by August 1, 2017 to let them know what matters most to you when it comes to lupus drugs.