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 2021, when our lupus advocates virtually visited Congress with your emails and phone calls, we submitted the following Lupus Research Alliance formal Congressional Asks for Fiscal Year (FY) 2022. On March 15, 2022, the President signed into law an omnibus bill that will fund federal government agencies for the remainder of Fiscal Year 2022. Update below.
The final status of our asks is provided below. We are now working on asking for support for lupus research in the FY 2023 budget. Check back the week of March 28 when you can use the Legislative Action Center to reach your legislators.
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 alongside the rising numbers of women treated at military health facilities and 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 2022 Defense Appropriations Bill. The additional investment is critical for discoveries that can make a difference in patients’ lives.
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.
Update as of March 15, 2022 – The Defense Appropriations Bill for Fiscal Year 2022, includes $10 million for the Lupus Research Program. We are thankful that Congress maintained the funding for this program, and we remain committed to advocating for steady and robust investment for this critical research.
Include Report Language in the Agriculture Funding Bill Urging the U.S. Food and Drug Administration (FDA) to Take Steps to Expedite Lupus Drug Development
There are only two drugs approved by the U.S. Food and Drug Administration (FDA) that were specifically developed for lupus. Lupus presents unique issues for drug development due to inadequate ethnic, racial and gender diversity among clinical trial participants. It is essential that treatments for lupus are studied in the populations who will be receiving them.
Proposed report language for the FY 2022 Agriculture Funding Bill as follows:
“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. 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.”
Update as of March 15, 2022 – The report that accompanies bill that funds the U.S. Food and Drug Administration includes the language requested.
Provide the National Institutes of Health (NIH) With At Least $46 Billion
Vigorous support of National Institutes of Health (NIH) research promises to save lives and reduce the burden of disease in lupus and many other diseases while also having a powerful effect on our economy on the local and national levels. To further our national commitment to research and to fighting lupus and other diseases, the Lupus Research Alliance asks that Congress provide at least $46 billion to NIH in FY 2022 to continue the effort to offset years of declining funding at the agency.
Update as of March 15, 2022 – The omnibus bill signed into law by President Biden today includes $45 billion for NIH, a $2.5 billion increase for the NIH. Estimated lupus research funding for FY 2022 is $139 million.