ADVOCACY at the Lupus Research Alliance focuses mainly on funding for lupus research that will lead to better treatments and eliminate racial disparities in healthcare.
LRA helps connects lupus research advocates with their representatives in Congress and their staff to describe their personal lupus journey and how the disease has affected their life, and to request specific policies that will move lupus research forward.
Following summarizes our requests and the status of those requests as of July 2024:
Increase Funding for the Lupus Research Program at the U.S. Department of Defense (DOD) to $15 Million
Given the high demand for new research along with the rising numbers of women treated at military health facilities as well as the link between post-traumatic stress disorder (PTSD) and the development of an autoimmune disease, the Lupus Research Alliance requests that Congress increase its investment and provide $15 million for the Lupus Research Program in the Congressionally Directed Medical Research Programs operated under the Defense Health Program in the Defense Appropriations Bill. This additional investment is critical for discoveries that can make a difference in patients’ ability to be the best version of themselves.
The LRA led the push for the creation of the Lupus Research Program which was first funded with $5 million in 2017 and increased to $10 million in 2020. LRA leadership, our advocates, and allied Members of Congress have successfully protected this funding since then, and we continue working to increase funding for promising and innovative research to benefit all people impacted by lupus.
Robust Funding for National Institutes of Health (NIH) Medical Research
Robust support of NIH research promises to save lives and reduce the burden of disease for those affected by lupus and many other diseases, while also having a powerful effect on our economy at the local and national levels. Each year, the Lupus Research Alliance works with allied research and patient advocacy organizations on a coordinated request for a responsible increase in NIH medical research funding to further the nation’s commitment to fighting lupus and other diseases.
Support LRA’s partnership with FDA, the Lupus Accelerating Breakthroughs Consortium (Lupus ABC)
LRA has convinced Congress to express its support for its public-private partnership with FDA – Lupus ABC – intended to accelerate development of lupus therapies. At LRA’s request, the House of Representatives and Senate approved the following provision in their respective Agriculture-FDA Appropriations bills:
The Committee is aware of barriers that have long affected the development of therapeutics for lupus, a disease that primarily targets women. A chronic and complex autoimmune disease, lupus can affect the joints, skin, brain, lungs, kidneys, and blood vessels, causing widespread inflammation and tissue damage in the affected organ. The Committee is pleased that FDA participated in an externally-led patient-focused drug development meeting with the lupus community and identified some of these barriers and that potential treatments are now in clinical trials. The Committee urges FDA to expedite its ongoing work with the lupus community to develop solutions to identified barriers that will accelerate development of new therapies.
