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 meetings, emails and phone calls, we submitted the following Congressional Asks for Fiscal Year (FY) 2023. Congress enacted funding bills for Fiscal Year 2023 that reflected our requests. Your voices were heard and action was taken!
As our Fiscal Year 2024 requests move through Congress, we will post updates here. Meanwhile, below details the final results from Fiscal Year 2023.
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.
Final Status – Success on December 29, 2022 – President Biden signed the Omnibus spending package which includes $10 million for the Lupus Research Program within the Department of Defense.
We are grateful that legislators protected existing funding for this program as some others were reduced or eliminated. Going forward, however, LRA and our allies and advocates will continue making the case that increasing research funding is merited and would be hugely impactful for lupus patients and families.
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 $49 billion to NIH in FY 2023 to continue the effort to offset years of declining funding at the agency.
Final Status – December 29, 2022 – President Biden signed the Omnibus spending package after Congress passed the appropriations bills for Fiscal Year 2023. The NIH has been allocated $47.5 billion, an increase of $2.5 billion above the FY 2022 enacted level.
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.
Link to Senate cosponsors of the DIVERSE Trials Act (S.2706)
Link to House cosponsors of the DIVERSE Trials Act (H.R. 5030)
Update as of December 23, 2022 – The bills were introduced in the respective chambers of Congress and had bipartisan support but were never brought to a vote. The year-end spending bill did include other beneficial items that will help increase diversity of clinical trials, but the DIVERSE Trials Act will need to be reintroduced in the next session of Congress that begins in January 2023.