#United States #Washington, D.C. #Lupus Foundation #Lupus Research #Lupus Advocacy

Amplifying the Voices of Lupus Advocates in Washington, D.C.

From April 19-21 in Washington, D.C., the National Lupus Advocacy Summit brought together hundreds of advocates from 42 states to call for increased funding and better care for those living with lupus. This summit stands out as the largest event of its kind in the nation, providing a platform for lupus warriors to connect with their congressional representatives and share their personal stories of battling this complex disease.

During the summit, participants had the chance to engage directly with lawmakers, stressing the vital need for federal investment in lupus programs and research that could significantly enhance the quality of life for lupus patients. With thousands joining virtually, the event's influence was amplified nationwide, demonstrating the profound commitment of the lupus community.

Key advocacy points were at the forefront of discussions during the summit, with advocates lobbying for more finances dedicated to lupus research and patient care. Some of their prioritized requests included:

• - $15 million for the Lupus Research Program at the Department of Defense.
• - $20 million for the Centers for Disease Control and Prevention’s National Lupus Patient Registry Program.
• - $4 million for the National Lupus Training, Outreach & Clinical Trial Program.
• - $51.3 billion for the National Institutes of Health to remain a powerhouse of lupus research funding.

Beyond funding discussions, participants also aimed to ensure timely access to healthcare for lupus patients. Advocates emphasized the necessity of limiting prior authorizations and step therapy requirements that often hinder immediate treatment access. Moreover, they argued for financial assistance programs to count towards out-of-pocket costs for insurance, alleviating some financial burdens for patients.

Louise Vetter, President and CEO of the Lupus Foundation of America, emphasized the power of unity within the lupus advocacy community. She stated, "The National Lupus Advocacy Summit serves as a powerful demonstration that we are united and passionate in our pursuit for better treatments and care. Each testimony shared reinforces the urgency for Congress to act." Her reflections resonate strongly with the notion that continuous support is essential for progress against this often-overlooked disease.

A highlight of the summit was the Lupus Heroes Celebration, recognizing individuals who have made significant contributions to the lupus community. Three awards were presented, celebrating those who have shown exceptional dedication and advocacy:
1. Lupus Research Hero Award: Dr. Lindsey A. Criswell received this honor in recognition of her substantial contributions to lupus research as the Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
2. Barlin Family of the Year Award: The Cancio-Bello Family was lauded for their philanthropic efforts in support of Team Bethany at the Walk to End Lupus Now®, demonstrating profound commitment to both the local and broader lupus community.
3. Sandra C. Raymond Advocate of the Year Award: Lynnai Jay, a passionate advocate and mentor, was acknowledged for her tireless work in empowering other lupus warriors through education and community engagement.

The summit showcased the ongoing efforts of the Lupus Foundation of America and its partners, such as AstraZeneca, Biogen, and others, who continue to support lupus advocacy, research, and education. With lupus still poorly understood and underfunded relative to its scope, the foundation remains steadfast in its mission to solve the mystery of this devastating autoimmune disease.

In conclusion, the 2026 National Lupus Advocacy Summit reaffirmed the importance of advocacy in driving legislative change for better care and funding in lupus research. As advocates return to their communities, they carry with them not just stories of struggle, but also hope and determination to ensure lupus remains a priority on the national agenda.