Lupus advocates from across the country returned to Capitol Hill for the National Lupus Advocacy Summit, which took place April 23-25. Hundreds of lupus advocates joined as the Lupus Foundation of America (LFA) gathered for the largest lupus advocacy event in the nation to learn from experts in the lupus field about the latest in lupus research, advocacy, and care, and to meet with their members of Congress to urge them to join the fight against lupus. Thousands more joined online to reach out to their members of Congress to support policies critical to the well-being of people with lupus.

Over the course of hundreds of constituent meetings, members of Congress listened as advocates told their stories and urged them to support policies that will improve access to high-quality health care, including:

• The Safe Step Act (S. 652), which would further restrict the use of dangerous step therapy protocols by insurance companies and allow people with lupus timely access to the medications prescribed by their doctor
• The HELP Copays Act (HR 830), legislation to ban so-called “co-pay accumulators” and require that the financial assistance many people rely on to afford their medications counts towards their health plan’s cost-sharing requirements, like their deductible and out-of-pocket maximum
• The BENEFIT Act (S. 526), which would elevate the patient voice in lupus drug development to help ensure that patient experience is considered when the Food and Drug Administration (FDA) reviews new treatments for lupus and other conditions

It’s critical that people with lupus have timely, affordable access to the medications prescribed by their health care teams to manage this debilitating disease. Insurance company tactics like step therapy and co-pay accumulators increase out-of-pocket costs for patients and limit the ability of people with lupus to access the medications they need when they need them. Both the Safe Step Act and the HELP Copays Act would help prohibit these dangerous policies and protect the ability of people with lupus to access the medications their doctors prescribe them.

Additionally, we know that people with lupus need new medications that not only improve outcomes, but also treat the symptoms that matter most to them. Patient experience data can help identify what is most meaningful to a person living with lupus and therefore enable pharmaceutical companies and the FDA to develop and approve treatments that more effectively respond to the needs of people with lupus and improve their quality of life. While the FDA can use this data to inform drug approvals, it is unclear how or whether it is being used. The BENEFIT Act would help change that and send a strong signal that patient experience data will be incorporated into the FDA’s review process, encouraging stakeholders to collect this data and enabling patients to truly inform the drug development process.

It’s critical that people with lupus have timely, affordable access to the medications prescribed by their health care teams to manage this debilitating disease.

Advocates also reminded their members of Congress of the importance of continuing to provide millions in funding for critical lupus-specific research and education programs through the Lupus Research Program at the Department of Defense, the Centers for Disease Control and Prevention National Lupus Patient Registry, the Office of Minority Health, National Lupus Training, Outreach & Clinical Trial Program, as well as billions in funding for the National Institutes of Health, the largest source of lupus funding.

During the Lupus Heroes Reception, lupus advocates were also honored for their commitment and contributions to the fight against lupus. The Barlin Family of the Year award was given to Brian and Abbey Antonsen. Brian has served as a founding member of the LFA’s Pacific Northwest Regional Leadership Council. Together they have worked tirelessly to increase awareness of lupus and have raised hundreds of thousands of dollars through their golf tournament to support the work of the Lupus Foundation of America.

Additionally, Toni Grimes was presented with the Sandra C. Raymond Advocate of the Year award. Grimes has demonstrated an incredible commitment to lupus advocacy, including serving as a Department of Defense consumer reviewer for its Lupus Research Program, a support group facilitator, filling various roles on LFA committees, and leading advocacy efforts each year in Washington at the National Lupus Advocacy Summit and in her home state of Arizona. For Grimes, advocacy is 365 days a year and her efforts continue to show the entire lupus community that each of us can make a difference in the fight against lupus.

Steve Gibson, the late President and CEO of the LFA, was also honored during the Lupus Heroes Reception with a tribute to celebrate his legacy and announce that funds from a Stevan W. Gibson Memorial Fund will support scholarships for the 2024-2026 National Lupus Advocacy Summit. These scholarships will assist lupus advocates with participating in future advocacy events to move the mission forward of improving the lives of those battling lupus.

“We are thrilled that lupus advocates united once again in Washington, DC for the National Lupus Advocacy Summit for a memorable and meaningful experience where they each made a difference in the fight against lupus while also learning about the latest in lupus research and important resources to manage living with lupus,” shared Mary T. Crimmings, Interim CEO, Lupus Foundation of America. “Advocacy is a cornerstone of our mission. The Summit empowers lupus advocates and gives them the opportunity to share with members of Congress the impact of lupus on people’s lives and highlight why congressional support for policies to improve access to care and advance research and education are critically important to everyone whose life has been touched by this disease.”

In addition to the support of our donors and Board members for helping to make the 2023 National Lupus Advocacy Summit possible, we greatly appreciate the unrestricted grants from the following organizations: Amgen, AstraZeneca, Aurinia Pharmaceuticals, Biogen, Cabaletta Bio, and Genentech.