Lupus Advocates Rally on Capitol Hill to Champion Lupus Care Access During Lupus Awareness Month

Lupus advocates from across the nation converged on Capitol Hill for the National Lupus Advocacy Summit May 19-21. Hosted by the Lupus Foundation of America (LFA), this event is the largest lupus advocacy gathering in the country, drawing hundreds of lupus advocates to meet with their members of Congress on Capitol Hill to urge them to increase funding for lupus research and education programs and ensure people with lupus have access to quality, affordable care. Thousands more joined the cause online, reinforcing the urgent need for Congress to act now in support of the lupus community nationwide. Attendees also were able to learn from experts about the latest advancements in lupus research, advocacy, and care.

During their Congressional meetings, advocates shared their personal stories living with lupus in addition to advocating for key legislative priorities, which included:

●    The Safe Step Act (S. 652): The legislation limits the use of step therapy or “fail first'' policies that can prevent people with lupus from accessing the medications they need and which have been prescribed by their doctors.
●    The HELP Copays Act (HR 830): This legislation helps increase the affordability of care and would eliminate "co-pay accumulators" to ensure that financial assistance for medications counts towards patients' deductibles and out-of-pocket maximums.

Timely and affordable access to medications is vital for lupus patients. Utilization management policies like step therapy and co-pay accumulators increase costs and limit access to necessary treatments. The Safe Step Act and HELP Copays Act would help eliminate these barriers, safeguarding lupus patients' access to prescribed medications.

Advocates also highlighted the importance of continued funding for essential lupus-specific research and education programs, including:

●    $15 million for the Lupus Research Program at the Department of Defense (DOD)
●    $12 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 (NIH), which is the single largest source of lupus research funding.

“We are incredibly honored to host hundreds of lupus advocates from across the nation on Capitol Hill for the National Lupus Advocacy Summit,” said Mary T. Crimmings, Interim CEO and Senior Vice President of Marketing and Communications, Lupus Foundation of America. “The Summit is a vital platform for people affected by lupus to share their unique experiences and connect with others battling this disease. The experiences shared by advocates underscores the urgent need for our nation’s leaders to increase funding for lupus research, improve access to care and treatments, and implement policies that enhance the lives of all people with lupus. During the Summit,  advocates were empowered with invaluable insights from leading lupus experts, engaged with members of Congress, and actively worked to drive meaningful change. Their passion and dedication are instrumental in shaping a future where everyone with lupus can live a better, healthier life.”

During the LFA’s Lupus Heroes Reception, lupus advocates were honored for their commitment and contributions to the fight against lupus. The 2024 Barlin Family of the Year award was given to the Festa Family. They first became involved in their local community, actively participating in local Walk to End Lupus Now events in Richmond and Washington, DC. In addition to community event engagement and sharing their commitment to the cause and how lupus has impacted their family, the Festa Family, through the Festa Family Foundation, has been supporting breakthrough scientific studies on behalf of the lupus community, including studies to determine if novel stem cell therapy is effective in treating active lupus and research focusing on making pregnancy safer for people with lupus.

The 2024 Sandra C. Raymond Advocate of the Year Award was presented to Olga Lucia Torres for her decade-long service to the lupus community. Olga has served as the Northeast regional Advocacy Chair, working to connect advocates in New York, New Jersey, and New England with advocacy initiatives like the National Lupus Advocacy Summit and advocating with their members of Congress throughout the year to advance policy priorities that make a difference in the lives of people with lupus. Olga also serves as one of the founding members of the Lupus Research Action Network, a peer-to-peer clinical trial education program that seeks to increase participation in lupus research, particularly among minority populations. As part of her lupus advocacy, Olga applied and was accepted as a member of the U.S Food and Drug Administration's Patient Engagement Collaborative (PEC), a joint project of the FDA and Clinical Trials Transformation Initiative (CTTI)  in which PEC members engage with FDA and CTTI to discuss many topics for improving communication, education, and patient engagement related to clinical trials. The Lupus Foundation of America strongly recommended Ogla for this critical role which will continue to elevate the lupus patient voice in clinical trials and drug development.

We thank our donors and Board members for their support in making the 2024 National Lupus Advocacy Summit possible. We also appreciate the support from the following organizations: AstraZeneca, Aurinia Pharmaceuticals, Biogen, Bristol Myers Squibb, Cabaletta Bio, Genentech, and PhRMA.