U.S. House of Representatives Passes Legislation Totaling $27 Million in Funding for Lupus Programs

This afternoon the U.S. House of Representatives voted to increase funding for lupus programs across the federal government, a huge victory for the lupus community and lupus advocates nationwide. Congress provided a total of $27 million – the most in history – for lupus programs in fiscal year 2026 at the Centers for Disease Control and Prevention (CDC), the HHS Office of Minority Health (OMH), and the Department of Defense (DoD).

In 2025, each of these programs were at risk of being cut or eliminated altogether. However, thanks to the year-round advocacy of lupus advocates, including during the Lupus Foundation of America’s National Lupus Advocacy Summit, Congress made lupus a priority! The Lupus Foundation of America led efforts to establish the lupus-specific research program at the Department of Defense in 2017, and we have continued to prioritize securing funding for the program, working with advocates to underscore its importance to Congress.

Congress not only restored funding for the Lupus Research Program at the DoD, but also delivered a 40% funding increase for the lupus program at the CDC and a 33% increase for the lupus program at OMH. Additionally, Congress provided a $415 million funding increase for the National Institutes of Health, the world’s largest source of lupus research funding, which the Administration had proposed to cut by 40% earlier in 2025.  

In addition to the funding increases, Congress extended policies that enable people with lupus to access telehealth services, passed Pharmacy Benefit Manager (PBM) reforms to improve affordability and access to care, and added much needed protections against funding policies designed to reduce the number of grants available from the NIH. 

"The Lupus Foundation of America championed each of these issues, but these victories were only possible through the tireless efforts of people living with lupus who shared their stories with Congress," said Patrick Wildman, Senior Vice President, Advocacy and Government Relations at the LFA. "The lupus community never gave up, despite the heavy burden of living with this complex autoimmune condition and the many challenges to accessing care faced by the community throughout 2025."

The Lupus Foundation of America is grateful for the unwavering dedication of our lupus champions in the House, including the Congressional Lupus Caucus, led by Reps. Andrew Garbarino (R-NY) and Bill Keating (D-MA), as well as Appropriations Committee leaders including Chairman Tom Cole (R-OK), Labor Health and Human Services Chairman Robert Aderholt (R-AL), and Ranking Member Rosa DeLauro (D-CT), and Defense Subcommittee Chairman Ken Calvert (R-CA), and Ranking Member Betty McCollum (D-MN).

Key Lupus Provisions Passed Today by the House of Representatives

• $14 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC) - a $4 million increase over FY 2025. Once enacted into law, total funding for the National Lupus Patient Registry would reach more than $135 million. The program, which the Lupus Foundation of America spent many years advocating for and helped establish in 2003, helps to advance our understanding of who gets lupus and how it affects those living with the disease. The program also helps to raise awareness of lupus among the public and medical community in order to reduce the time it takes to diagnose lupus and it provides important resources and tools, such as the National Resource Center on Lupus, that can improve lupus outcomes and the quality of life of those living with lupus.
• $3 million for the National Lupus Training, Outreach, and Clinical Trial Education Program at the Office of Minority Health (OMH), representing a $1 million increase. This program, which the Lupus Foundation of America worked with Congress to create is designed to help break down the barriers that limit participation in lupus clinical trials and the development of new treatments, ensuring trials are representative of the lupus population.  
• $10 million for the Department of Defense (DoD) Lupus Research Program (LRP),  which Congress eliminated in 2025. This would bring total funding to $75 million since the Lupus Foundation of America helped establish a dedicated program in 2017. The program has been instrumental in advancing innovative, high-impact, patient driven lupus research and fills gaps to support research not funded by the private sector or other government agencies.
• $47.2 billion for the National Institutes of Health (NIH), a $415 million increase for  the largest funder of lupus research.  The legislation also includes key provisions advocated for by the Lupus Foundation of America:
  • Maintains the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the lead NIH institute for lupus research, which the Administration had proposed eliminating as a stand-alone institution.
  • Preserves facilities and administrative (F&A) cost reimbursement to ensure that lupus research institutions have the resources and infrastructure to support and sustain lupus research
  • Establishes guardrails against funding policies that reduce the number of research grants
• Two year extension of telehealth flexibilities. The flexibilities which were set to expire on January 30 are extended until December 31, 2027. These flexibilities enable people with lupus to continue to access telehealth services, an important option for people with lupus living in rural areas or in areas where they may not have access to lupus specialists.
• Pharmacy benefit manager (PBM) reform.  Reforms would improve affordability by establishing flat fees for PBM services and increase transparency of PBM practices that can limit access to care.

Next Steps, 2026 National Advocacy Summit

The U.S. Senate is expected to pass the legislation next week and send it to the President. While this is a significant victory, the debate on funding for FY 2027 already is underway and much more also needs to be done to help ensure people with lupus have access to the care they need. This means that lupus advocacy must continue and be as relentless as ever! 

You can make your voice heard by joining us in Washington, DC in April at the Lupus Foundation of America’s National Lupus Advocacy Summit. See here for registration and more information.