Lupus Advocates Gather in Washington to Demand Better Care and Research Funding
Lupus Advocates Gather in Washington to Demand Better Care and Research Funding
In a show of solidarity and determination, lupus advocates from all over the United States convened in Washington, DC, from May 4 to May 6 for the National Lupus Advocacy Summit, an event orchestrated by the Lupus Foundation of America (LFA). As the largest lupus advocacy gathering in the nation, this significant summit brought together hundreds of individuals with lupus, friends, families, and healthcare providers to engage in discussions and meetings with their representatives in Congress about pressing issues facing the lupus community.
The summit not only aimed to fortify advocacy efforts but also served as a platform for participants to share their personal experiences with lupus and highlight the urgent need for continued support in the realm of healthcare access and research funding. Thousands of additional advocates joined the summit online, amplifying their voices in a collective call to action directed at Congress to prioritize the needs of the lupus community.
Among the crucial topics discussed during the summit were the accessibility of Medicaid and the importance of sustained funding for lupus-specific research initiatives. Advocates articulated the critical role that Medicaid plays as a lifeline for health care access for approximately 20-25% of Americans living with lupus. This program ensures that those affected have the ability to seek specialists, obtain necessary medications, and access vital treatments that can significantly enhance their quality of life.
Additionally, the summit spotlighted the need for increased financial backing for a series of essential lupus research, awareness, and education programs. Advocates called for:
- - $15 million for the Lupus Research Program at the Department of Defense (DoD)
- - $20 million for the CDC's National Lupus Patient Registry
- - $3 million for the National Lupus Training and Outreach Clinical Trial Program at the Office of Minority Health (OMH)
- - $51.3 billion for the National Institutes of Health, which represents the largest funding source for lupus research
“It’s a crucial time for the lupus community,” stated Louise Vetter, President and CEO of the Lupus Foundation of America. She emphasized that without continued investment, the momentum gained in the ongoing fight against this chronic and debilitating condition could be jeopardized. The summit thus became an essential venue for lupus advocates to engage directly with their congressional representatives, ensuring that the realities of living with lupus are not overlooked in national policy discussions.
The summit also included the Lupus Heroes Reception, celebrating remarkable contributions from advocates within the community. Two individuals were recognized for their committed efforts in supporting lupus initiatives:
- - Jill Nelson and Andrew Logie received the 2025 Barlin Family of the Year Award for their unwavering dedication. Jill's journey began with grassroots initiatives like the LFA's Virtual 6 Challenge and the Hartford Walk to End Lupus Now®. Their involvement has significantly endorsed vital studies, particularly in the area of mesenchymal stromal cell therapy.
- - Sanjay Mishra and his daughter Arya were presented with the 2025 Sandra C. Raymond Advocate of the Year Award for their advocacy work since Arya's lupus diagnosis at the age of nine. Sanjay has worked relentlessly to build a strong relationship with elected officials, promoting awareness and funding through initiatives like the Bollywood Bounty fundraiser.
The Lupus Foundation of America extended heartfelt thanks to its Board of Directors, donors, and partners, including AstraZeneca, Biogen, Bristol Myers Squibb, Genentech, GSK, and PhRMA, for their generous support in making the 2025 National Lupus Advocacy Summit a success.
As the summit concluded, advocates left with renewed energy and commitment to continue their fight for recognition, funding, and improved healthcare access for all individuals afflicted with lupus, a condition that remains largely misunderstood and underfunded despite its extensive impact on health and quality of life. The path forward involves relentless advocacy and raising awareness that lupus must remain a national priority, propelling efforts for a brighter future for those affected by this complex illness.
About the Lupus Foundation of America
The Lupus Foundation of America stands as the only national organization fully dedicated to unraveling the enigma of lupus, a condition characterized by its unpredictability and harsh impact on those who suffer from it. Through comprehensive research, education, and advocacy programs, they lead efforts to improve the lives of everyone impacted by lupus.
Understanding Lupus
Lupus is an autoimmune disease that can severely affect various parts of the body, making it notoriously challenging to diagnose and manage. It can manifest through diverse symptoms, from skin rashes to more serious ailments like heart attacks. The hidden nature of lupus means it often escapes public awareness, contributing to the lack of adequate research support necessary to combat its dire consequences effectively.
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