Update as of May 1, 2025
Challenges facing biomedical research — and lupus research specifically — have never been greater. In March 2025, Congress enacted a full-year federal funding bill that cut the Congressionally Directed Medical Research Programs by $850 million, or 57%. Congress did not specifically require $10 million be allocated to the Lupus Research Program, as the House of Representatives had required in its funding bill last year. These reductions and future measures under consideration may impact the progress of lupus research and impede advancement of much-needed new treatment and diagnostics for individuals living with lupus.
As the largest private funder of lupus research worldwide, the Lupus Research Alliance (LRA) is monitoring the current landscape closely and remains steadfast in its mission. That is why we are taking steps to ensure Congress and the Administration understand the importance of research for people living with lupus now and in the future. Our recent actions include the following:
- LRA organized a letter-writing campaign for lupus research advocates to contact their members of Congress directly to express their support for lupus research and to urge Congress to provide more — not less — research funding. Advocates from New York, Texas, Georgia, North Carolina, New Jersey, Colorado, Alabama, Virginia, and many other states have taken action to make their voices heard.
- LRA is working directly with the Co-Chairs of the Congressional Lupus Caucus, Reps. Andrew Garbarino (R-NY) and Bill Keating (D-MA), who are leading a letter to the House Appropriations Committee requesting an increase in lupus research funding, which will be co-signed by dozens of other members of Congress.
- LRA leadership is engaging directly with House of Representatives leadership to make clear the importance of restoring and increasing lupus research funding.
- When the Senate Appropriations Committee held an April 30th hearing “Biomedical Research: Keeping America’s Edge in Innovation,” LRA wrote and submitted an official statement for the record describing lupus, the benefits of federal and private lupus research, and urging Congress to maintain robust investments in the Department of Defense Lupus Research Program and National Institutes of Health (NIH) grants focused on lupus, and to continue supporting our partnership with the FDA, the Lupus Accelerating Breakthroughs Consortium (Lupus ABC)
- When reports emerged that the Administration will request massive funding cuts to the NIH and a consolidation of NIH institutes that award lupus grants, LRA joined 534 other organizations in signing a letter opposing these proposals that was organized by the Coalition for Health Funding.
- The two premier federal institutes within the NIH awarding grants for lupus research are the National Institute of Allergy and Infectious Disease (NIAID) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). LRA signed letters urging robust funding increases for these institutes and for NIH overall that were organized by the Friends of NIAID and the NIAMS Coalition.
- In May, LRA, sponsored a policy briefing in coordination with the Congressional Lupus Caucus at the U.S. Capitol. The briefing, featuring lupus patients, physicians, and researchers, educated legislative policymakers and their staff about lupus, advances in therapies that have resulted from robust research enterprise, and the negative effects that will result from cutting research funding and personnel. Caucus co-chair Representative Bill Keating was among the speakers.
- LRA continues to work with the U.S. Food and Drug Administration (FDA) on our unique public-private-partnership in lupus, the Lupus ABC, which is coordinating government, industry, and academia in surmounting barriers facing improved care for lupus patients.
Despite the challenges facing lupus research, the future is bright because of advocates like you. The LRA will continue to amplify the community’s voices to ensure the federal government does its part to help improve the lives of people living with lupus.
