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.
Each spring, lupus research advocates meet with Members of 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:
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 are working to advance research priorities like this that are critical to the Lupus Research Alliance and all people impacted by lupus.
Status– The Defense Appropriations bill passed by the House of Representatives includes $10 million for the Lupus Research Program.
We are grateful that legislators protected existing funding for this program as others were cut due to difficult budgetary decisions, however LRA and our allies and advocates will continue making the case that increasing research funding is merited and would be hugely impactful for people with lupus.
Provide the National Institutes of Health (NIH) With At Least $51 Billion
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. The Lupus Research Alliance asks that Congress provide at least $51 billion to NIH in to further the nation’s commitment to fighting lupus and other diseases.
Status– The House Labor, HHS, Education Appropriations bill, which sets the funding amount for the NIH, includes $48 billion for NIH. It would also consolidate and restructure existing institutes and centers, including the National Institute for Allergy and Infectious Diseases (NIAID) and the National Institute for Arthritis and Musculoskeletal and Skin Diseases (NIAMS), which could have unforeseen negative consequences on funding streams important to lupus research. The Senate has not yet advanced its own LHHS Appropriations bill.
Support LRA’s partnership with FDA, the Lupus Accelerating Breakthroughs Consortium (Lupus ABC)
The Lupus Research Alliance has worked to include language that accompanies the Agriculture, Rural Development, Food and Drug Administration (FDA) bill to support accelerating lupus therapies. Both the House and Senate Appropriations Committees have included important language relevant to lupus similar to what LRA requested. The following language was included in the Senate report:
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.
