Lupus Advocates Unite on Capitol Hill to Protect Access to Care and Research Funding During Lupus Awareness Month

WASHINGTON, May 7, 2025 /PRNewswire/ -- Lupus advocates from across the country gathered in Washington, DC for the National Lupus Advocacy Summit, held May 4-6. Hosted by the Lupus Foundation of America (LFA), the Summit is the largest lupus advocacy event in the nation, bringing together hundreds of lupus warriors to meet with their members of Congress to urge them to protect access to care and invest in lupus research. Thousands more joined the Summit online, amplifying the call for Congress to support the lupus community.

Throughout the Summit, advocates engaged with lupus experts, connected with peers, and gained valuable insights into the latest advances in lupus research, policy and care. During meetings with Congress, LFA advocates shared their personal lupus journeys and called for action on key priorities, including:

• Protecting access to Medicaid, a vital lifeline for health care for 20-25% of Americans with lupus.
• Sustaining and increasing funding for critical lupus-specific research, awareness and education programs, including:
  ○ $15 million for the Lupus Research Program at the Department of Defense (DoD)
  ○ $20 million for the Centers for Disease Control and Prevention (CDC) National Lupus Patient Registry
  ○ $3 million for the National Lupus Training, Outreach & Clinical Trial Program at the Office of Minority Health (OMH)
  ○ $51.3 billion for the National Institutes of Health, which is the single largest source of lupus research funding

Medicaid plays a critical role in providing access to specialists, medications, and life-saving treatments for people living with lupus. Continued investment in federal lupus research, awareness, and education programs is essential to driving scientific discoveries and bringing us closer to better treatments and, ultimately, a cure.

"This year's Summit comes at a pivotal moment for the lupus community," said Louise Vetter, President & CEO of the Lupus Foundation of America. "Protecting access to Medicaid and strengthening federal funding for lupus research programs is critical to improving the lives of the estimated 1.5 million Americans living with lupus. Without continued investment, we risk losing momentum in the fight against this devastating disease. The Summit is the perfect platform for lupus advocates to use their powerful voices to speak with their members of Congress about why lupus must remain a national priority so that people with lupus are never left behind."

The National Lupus Advocacy Summit also celebrated outstanding leaders in the lupus community. During the Lupus Heroes Reception, two exceptional advocates were recognized for their contributions:

• The 2025 Barlin Family of the Year Award was presented to Jill Nelson and her father, Andrew Logie, whose steadfast commitment to the lupus community has made a lasting impact. Jill began her involvement through the LFA's Virtual 6 Challenge campaign and the Hartford Walk to End Lupus Now®, and now serves as an LFA Ambassador and advocate. Together, Jill and Andrew have been generous champions of lupus research – most notably supporting groundbreaking studies in mesenchymal stromal cell (MSC) therapy. Their support has helped shape the direction of the LFA's national research efforts, including the MiSLE study, which recently completed enrollment.
• The 2025 Sandra C. Raymond Advocate of the Year Award was awarded to Sanjay Mishra and his daughter Arya, who have been dedicated lupus advocates since Arya's diagnosis at age 9. As Advocacy Co-Chair for the Pacific Northwest, Sanjay has worked closely with the LFA and helped build a strong relationship with his elected officials through consistent outreach and community engagement. Arya continues to inspire others with her advocacy, and together they've led impactful efforts like their recent Bollywood Bounty fundraiser, which brought local leaders and supporters together to raise awareness for lupus.

The Lupus Foundation of America extends its deepest gratitude to its Board of Directors, donors, and the following organizations whose support helped make the 2025 National Lupus Advocacy Summit possible: AstraZeneca, Biogen, Bristol Myers Squibb, Genentech, GSK, and PhRMA.

About the Lupus Foundation of America:
The Lupus Foundation of America is the only 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.

About Lupus:
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, hits out of nowhere, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive, and can be fatal, yet research on lupus remains underfunded relative to its scope and devastation.

MEDIA CONTACT

Mike Donnelly
World Lupus Federation
[email protected]

SOURCE Lupus Foundation of America, Inc.