2018 National Lupus Advocacy Summit
March 20-21, 2018
The 2018 National Lupus Advocacy Summit brought together thousands of lupus advocates, including many youth advocates, who visited, emailed or called their elected officials to support lupus research funding. Together, they urged members of Congress to:
- Increase funding for the National Lupus Patient Registry at the Centers for Disease Control and Prevention to help identify what causes lupus and how to speed time to diagnosis.
- Double funding for the Lupus Research Program at the Department of Defense, a program dedicated exclusively to advancing lupus research and improving the lives of U.S. servicemen and women, who may be at a higher risk for developing lupus.
- Continue funding for the National Lupus Training, Outreach & Clinical Trial Program at the Office of Minority Health (OMH), which is designed to increase minority participation in clinical trials with a focus on African Americans, Hispanics, Asians and Native Americans – populations that are at greater risk of developing lupus.
- Provide additional funding for the National Institutes of Health, the single largest source of lupus research funding that supports basic, clinical and translational research of the disease across the country.
Advocates also saw the impact of their outreach to their legislators over the past year as President Trump on March 23, 2018 signed into law the fiscal year 2018 Omnibus Appropriations Bill, which included increased funding for critical lupus research and education programs through September 30, 2018.
“Under the leadership of the Congressional Lupus Caucus, members of Congress have long recognized the importance of supporting the lupus community, and have over time stimulated millions of dollars to increase lupus research funding to help improve the lives of all people affected by this cruel disease,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “This year our advocates, including many youth advocates, showed their strength, power and dedication to changing the future by leading the charge to discuss with their elected officials their daily struggles with the disease and show the urgent need to increase funding for research, access to quality and affordable care, and awareness of lupus.”
In addition to advocating on Capitol Hill, the National Lupus Advocacy Summit provided those living with lupus and their families with empowering activities including interactive workshops and educational programming with a special focus on childhood lupus. The Summit’s first panel session discussed the latest news and challenges in childhood lupus research and drug development, and provided hope that there is encouraging work underway and progress being made. For years, the Lupus Foundation of America has made childhood lupus research a priority, funding research and supporting efforts to better understand the disease in children and teens and to help advance the development of new treatments.
Congressional Briefing
To advance awareness of lupus across Congress, the Lupus Foundation of America also hosted an educational Congressional Briefing. Speakers during the briefing included Susan Manzi, M.D., M.P.H., Chair of the Medicine Institute at Allegheny Health Network and Medical Director of the Lupus Foundation of America; Karen Costenbader, M.D., M.P.H., Director of the Lupus Program at Brigham and Women’s Hospital and Professor of Medicine at Harvard Medical School and Chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council; two co-chairs from the Congressional Lupus Caucus, Representative Ileana Ros-Lehtinen (R-FL) and Representative Bill Keating (D-MA); Xcenda’s Jennifer Snow, and lupus advocate Amarissa Mauricio.
“Thanks to our year-round lupus advocates and support from Congress, we have taken several steps forward in the fight against lupus, however more work remains ahead of us,” said Dr. Manzi. “To this day, there has only been one drug developed specifically for lupus and most treatments used for lupus are borrowed from other diseases and can have damaging side effects. It’s inspiring to see so many lupus advocates make their voices heard this week as they met with their representatives, shared their stories and discussed the hope they have for a world free of lupus.”
Lupus Heroes Reception
The Lupus Foundation of America also honored those whose advocacy has made a difference in the fight against lupus at the Lupus Heroes Reception. The honorees included lupus advocates Monique Gore-Massy of Brooklyn, New York and Tiffany Alsbury of Hattiesburg, Mississippi, as well as representatives from the Childhood Arthritis and Rheumatology Research Alliance (CARRA).