Advocates From Across the Country Urge Congress to Support Lupus Research Funding
This week over 350 lupus advocates took to Capitol Hill as part of the largest National Lupus Advocacy Summit, urging Congress to increase critical lupus research funding and support of education programs. In addition, virtual advocates sharing their lupus story sent over 4,000 emails to members of Congress. In total, advocates reached out to 518 Congressional offices. Combined, they delivered a powerful message – support more funding for lupus research and programs that can improve the lives of those impacted by the disease.
Advocates urged members of Congress to support:
- $10 million for the Lupus Research Program at the Department of Defense
- $8 million for the Centers for Disease Control and Prevention (CDC) National Lupus Patient Registry
- $2 million for the Office of Minority Health, National Lupus Training, Outreach & Clinical Trial Program
- $41.6 billion for the National Institutes of Health, an increase of $2.5 billion for the largest source of lupus finding which provided $115 million for lupus research last year alone
These programs are critical to advancing lupus research. They are designed to increase the understanding of lupus, its causes and how it can be treated; speed time to diagnosis and ensure people with lupus are receiving the care they need as soon as possible; and increase enrollment in clinical trials, which can accelerate the development of new treatments.
The two-day annual event in Washington, D.C. also provided attendees with empowering programs and activities, including panel discussions on lupus research and drug development as well as training to help advocates tell their story while meeting with representatives throughout the year.
The Summit also featured a parallel ‘Kids’ Congress’ focused on childhood lupus and included programming for young advocates and their families. More than 30 teenagers and young adults living with lupus attended the Kids’ Congress and participated in educational activities such as how to track symptoms, identify disease triggers and other topics designed to help children better cope with the disease. Importantly, the Kids’ Congress provided tailored advocacy training that helps youth advocates tell their lupus story and the unique impact that the disease has on kids.
“This is my second year attending the Lupus Foundation of America’s Advocacy Summit – sharing my lupus story with my representatives and advocating for more research funding and policies that ensure we have access to the care we need,” shared Lydia Sundberg, age 18, lupus advocate. “Lupus has affected my ability to participate in sports and clubs, spend time with friends, and live the life of a typical college student. By attending the Summit, I know that I’m not alone as a young adult with lupus and that we have a voice – a voice that can make a difference in the fight against this disease and that can urge members of Congress to join our fight.”
“The voices of people impacted by lupus are extremely powerful and a critical component of how we empower them to be part of the fight to end the disease,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America. “Seeing more than 350 lupus advocates, from across the country meet with our nation’s leaders about the urgent need for more research and better treatments was so impactful. We are encouraged by the members of Congress who listened to their stories, and who understand why we must continue to increase lupus research funding and access to quality, affordable care.”
The event also honored champions in lupus advocacy. This year, Judy Barlin, who serves on the Foundation’s Board of Directors and Chairs the Board’s Advocacy and Government Relations Committee received the first-ever Sandra C. Raymond Advocate of the Year award. Judy’s son Michael lost his life to lupus at the age of 24. She, along with her husband Wayne, have dedicated countless hours advocating for families impacted by lupus and ensuring that the needs of children with lupus are recognized in research. Judy’s vision led the Foundation to launch a childhood lupus research program – funding research and supporting advocacy focused on childhood lupus. Last year, we saw these efforts result in Congress directing the CDC to fund nearly $1 million in childhood lupus research this year. She and her husband have also supported and stimulated millions of dollars to help advance lupus research and established the Michael Jon Barlin Pediatric Lupus Research Program in their son Michael’s memory.
In addition to the support of our donors and Board members for helping to make the 2019 National Lupus Advocacy Summit possible, we greatly appreciate the unrestricted grants from the following organizations: Amgen, Aurinia Pharmaceuticals, Boehringer-Ingelheim, Celgene, Eli Lilly, Genentech, GlaxoSmithKline, Mallinckrodt, Pfizer and PhRMA.