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.
In March 2023, when lupus advocates virtually visited Congress with meetings, emails and phone calls, we submitted the following Congressional Asks for Fiscal Year (FY) 2024. As our Fiscal Year 2024 requests move through Congress, we will post updates on this page.
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 FY 2024 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 fiscal year 2017 and increased to $10 million in fiscal year 2020. LRA leadership and members of the Congressional Lupus Caucus have encouraged Congress to invest in research priorities like this that are critical to the Lupus Research Alliance and all people impacted by lupus.
Status as of February 1, 2024 – The Department of Defense funding bill for Fiscal Year 2024 includes $10 million for the Lupus Research Program within the Department of Defense. Congress has repeatedly failed to meet deadlines to enact this legislation. The House and Senate are currently reconciling their versions of the bill, and the current deadline for enactment is March 8th.
We are grateful that legislators protected existing funding for this program, 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.
Status as of June 23, 2023 – The Appropriations Committee in the U.S. House of Representatives Department of Defense funding bill for Fiscal Year 2024 includes $10 million for the Lupus Research Program within the Department of Defense. The bill now moves to the full House of Representatives for a vote. The Senate must release and consider a bill as well, and the two will be reconciled.
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 FY 2024 to further the nation’s commitment to fighting lupus and other diseases, as well as to continue the effort to offset years of declining funding at the agency.
Status as of February 1, 2024 – The House of Representatives and the Senate are currently reconciling versions of their Fiscal Year 2024 Labor, Health and Human Services, and Education bills, which set the funding amount for the NIH. While the House bill would cut $2.8 billion from NIH’s 2023 funding level, the Senate bill would increase NIH funding by 2% to $47.8 billion. It is important for advocates to continue to make the case to increase funding for NIH and not decrease it.
Status as of July 19, 2023 – The Fiscal Year 2024 Labor, Health and Human Services, and Education bill which sets the funding amount for the NIH was released with proposed funding of $44.6 billion, a cut of $2.8 billion below the enacted level and well below our request.
Support the DIVERSE Trials Act When it is Re-Introduced
Clinical trials are key to development and approval of new therapies for lupus and other diseases. Unfortunately, many racial and ethnic groups disproportionately affected by lupus are routinely underrepresented in clinical trials. The DIVERSE Trials Act, previously introduced by Representatives Ruiz and Bucshon and Senators Menendez and Tim Scott, aims to make it easier for underrepresented groups to participate in clinical trials by reducing barriers to enrollment. The Lupus Research Alliance requests Members of Congress support the DIVERSE Trials Act when this important legislation is re-introduced.
Status as of June 23, 2023 – The bills are expected to be introduced before Congress breaks for summer recess.
Include Language in the Agriculture, Rural Development, Food and Drug Administration bill to support advancement of lupus therapies
In addition to the above requests advocates made to their members of Congress, the Lupus Research Alliance has worked to include report 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 this important language relevant to lupus. Below, is what is include in the House report, language in the Senate report is similar.
Lupus.—The Committee is aware of barriers that have long affected the development of therapeutics for Lupus, a disease that primarily targets women and disproportionately impacts African Americans, Latinas, Native Americans, and Asian Americans. The Committee is pleased that potential Lupus treatments to address these barriers 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.