Dressed in signature purple attire or accessories, more than 350 lupus advocates from around the U.S. came together on Capitol Hill earlier this month to urge Congress to earmark more funds for lupus research and education.
As part of the Lupus Foundation of America’s 2019 National Lupus Advocacy Summit — which aims to improve the lives of those affected by lupus — patients and advocates also sent more than 4,000 emails to 518 legislative offices.
Specifically, members of Congress were asked to support:
- $10 million for the Department of Defense Lupus Research Program
- $8 million for the Centers for Disease Control and Prevention National Lupus Patient Registry
- $2 million for the Office of Minority Health, National Lupus Training, Outreach, and Clinical Trial Education Program
- $41.6 billion for the National Institutes of Health, which would amount to a $2.5 billion increase for the entity that gave $115 million for lupus research last year alone.
Together, the goal of the programs is to enhance understanding of what causes lupus and how it can be treated, produce faster diagnoses, and bolster enrollment in clinical trials.
“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,” Stevan W. Gibson, the foundation’s president and CEO, said in a press release. “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.”
During the two days in Washington, D.C., advocates received extensive training, heard from leading researchers and physicians, and connected with fellow advocates from around the country. The event also honored champions in lupus advocacy who were instrumental in the development of the foundation’s Childhood Lupus Research Program.
Panel discussion topics included “The State of Lupus Research,” “Emerging Treatments,” “The Promise of Mesenchymal Stem Cells,” and “Department of Defense: Lupus Research Program.” The following day, participants met with lawmakers to urge them to support policies that will advance the fight against lupus.
For lupus advocates under 21 and their families, the summit also featured a program called Kids’ Congress, focusing on topics such as childhood lupus, nutrition, and time management. Participants learned how to track symptoms and identify disease triggers. In addition, youth advocates were trained how to effectively tell their story and discuss the impact lupus has on youths.
“Lupus has affected my ability to participate in sports and clubs, spend time with friends, and live the life of a typical college student,” said 18-year-old lupus advocate Lydia Sundberg. “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.”
The summit is the nation’s premier lupus advocacy event. Last year, it helped secure more than $14 million in federal funding for critical lupus and research programs. Since its establishment, it has generated more than $119 million.
Lupus is an inflammatory disease caused when the immune system attacks the body’s own tissues. It mostly strikes women of childbearing age. The Lupus Foundation of America estimates that 1.5 million Americans, and at least 5 million people globally, have a form of lupus.