WASHINGTON, March 5, 2021 /PRNewswire/ -- The Lupus Foundation of America's 2021 Digital Lupus Advocacy Summit brought together thousands of lupus advocates from across the country to participate in educational and networking opportunities, while also advocating for funding of critical lupus programs. The Summit, which took place March 2 – 4, was the largest advocacy gathering of people with lupus ever, and included hundreds of virtual and phone meetings between members of Congress and lupus advocates asking their elected officials to support policies that will improve the quality of life for everyone affected by the disease.
Advocates urged members of Congress to support:
$10.5 million for the National Lupus Registry at the Centers for Disease Control (CDC);
$15 million for the Lupus Research Program at the Department of Defense (DoD);
$2 million for the lupus program at the Office of Minority Health (OMH); and
$46.1 billion for the National Institutes of Health, which provided an estimated $127 million for lupus research last year.
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, including in children and teenagers; 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, particularly among minority communities, which can accelerate the development of new, safe and effective treatments for lupus. In addition to research and program funding, advocates shared with their members of Congress about their experiences during the COVID-19 pandemic to help them understand the needs of the lupus community, including access to care, health equity and social determinants of health.
During the first two days of the event, attendees gathered virtually to participate in panel sessions with lupus experts. Panels focused on the latest in lupus research, highlighting newly approved lupus nephritis therapies and other potential treatments currently in clinical trials. A panel of experts also discussed COVID-19, including the most important issues for people living with lupus, the latest information on vaccines, and specific resources for the lupus community. There were also panels focused on access to care, with a deep dive discussion on insurance coverage, cost and programs to help people with lupus navigate their journey with the disease. In addition, the Summit featured a virtual Youth Congress with specific programming for young people with lupus and their families.
"This is my second year attending the Lupus Foundation of America's Digital Lupus Advocacy Summit. My husband and I had an amazing experience attending panel discussions, connecting with others in the lupus community, and joining virtual meetings with our members of Congress. Also, since the Summit was a digital experience, more of my friends and family were able to participate—making it such a wonderful and memorable experience overall," shared Valori Corral-Nava, Lupus Foundation of America Advocate, Florida. "I know that our advocacy efforts made a lasting impression. Our members of Congress heard our stories and why supporting funding for lupus research and education programs is so critical. It was clear from our conversations that we made an impact!"
"Year after year we see the dedication and passion from thousands of our lupus advocates making their voices heard with our nation's leaders – and this year's Digital Lupus Advocacy Summit was no different," said Stevan W. Gibson, president and CEO, Lupus Foundation of America. "Hosting in a digital format again this year due to the COVID-19 pandemic has brought a silver lining – we've been able to bring together even more lupus advocates with important education panels and our advocates have amplified their voices with their members of Congress. We are encouraged by the response from Congress who listened to the personal stories of our lupus advocates and we look forward to working with them to ensure funding for critical lupus research and education programs as well as access to care."
In addition to the support of our donors and Board members for helping to make the 2021 Digital Lupus Advocacy Summit possible, we greatly appreciate the unrestricted grants from the following organizations: AstraZeneca, Aurinia Pharmaceuticals, Bristol Myers Squibb, Genentech, GlaxoSmithKline, Pfizer, and PhRMA.
About the Lupus Foundation of America The Lupus Foundation of America is the national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org.