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 2022, when lupus advocates virtually visited Congress with emails and phone calls, we submitted the following Lupus Research Alliance formal Congressional Asks for Fiscal Year (FY) 2023. Congress is currently working on appropriations bills.
Updates of our requests are provided below.
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 2023 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. You can take action the week of November 14 when the House of Representatives is in session for the last time this year.
Update as of November 9, 2022 – The House of Representatives will be back in session starting Monday, November 14 and will be deliberating spending bills for Fiscal Year 2023. This is the time for us to voice the need for an increase to the allocation for the Lupus Research Program! We ask you to call your Representative in Congress and urge them to support $15 million for lupus research in this spending bill. Click here for a script to guide your phone call and press this link for the information to contact your Representative.
Update as of September 30, 2022 – Congress did not pass a budget for fiscal year 2023 which begins on October 1 and instead passed a continuing resolution (CR) keeping federal research programs funded through December 16 at the current fiscal year 2022 levels. After the midterm elections in November, Congress will reconvene and negotiate a longer-term funding agreement. With your help, we are aiming to secure a funding increase for the Lupus Research Program from $10 million to $15 million in 2023. In November, when detailed negotiations for a long-term funding package begin, we will ask for the lupus community to reach out to their members of Congress to demonstrate how important lupus research is to you and your family.
Update as of July 25, 2022 – The House of Representatives Defense Appropriations Bill for Fiscal Year 2023, 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.
Provide the National Institutes of Health (NIH) With At Least $49 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 2023 to continue the effort to offset years of declining funding at the agency.
Update as of September 30, 2022 – Congress did not pass a budget for fiscal year 2023 which begins on October 1 and instead passed a continuing resolution (CR) keeping federal research programs funded through December 16 at the current fiscal year 2022 levels.
Update as of July 25, 2022 – The House of Representatives Labor, Health and Human Services, Education, and Related Agencies bill provides a total of $47.5 billion for NIH, an increase of $2.5 billion above the FY 2022 enacted level. Estimated lupus research funding for FY 2022 is $139 million.
Co-sponsor The DIVERSE Trials Act (H.R. 5030/S. 2706)
Clinical trials are key to development and approval of new therapies for lupus and other diseases. Unfortunately, certain racial and ethnic groups disproportionately affected by lupus are routinely underrepresented in clinical trials. The DIVERSE Trials Act (H.R. 5030/S. 2706) would increase diversity in clinical trials and make it easier for underrepresented groups to participate in clinical trials by reducing barriers to enrollment. You can see if you Members of Congress are listed as a cosponsor of the DIVERSE Trials Act.