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 and are updating this page to keep you posted on the progress through the legislative process:
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 July 12, 2021 – the House Appropriations Committee released the fiscal year 2022 Defense Appropriations Bill with $10 million for the Lupus Research Program (LRP) in the Congressionally Directed Medical Research Programs operated under the Defense Health Program.
Update as of July 14, 2021 – Yesterday, the House Appropriations Committee passed the Defense Appropriations Bill for Fiscal Year 2022, and it 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 is included below.
Update as of June 29, 2021 – The House Appropriations Committee released the bill that funds the U.S. Food and Drug Administration (FDA) and on June 30 the Committee passed the bill. The bill’s accompanying report, which expresses Congressional intent for the use of the funding, includes language regarding lupus drug development, which the Lupus Research Alliance advocated for strongly. We will be sure to keep you informed as this bill continues through the legislative process and identify opportunities when you can make your voice heard. Meanwhile, congratulations on a job well done!
Update as of July 29, 2021 – Today, the House Appropriations Committee passed a 7-bill minibus that includes the Agriculture bill. The language the LRA and our advocates requested are in the bill.*
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 July 12 – Today the Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Subcommittee approved the fiscal year 2022 bill that funds the National Institutes of Health (NIH). The bill funds NIH at $49 billion which includes an increase of $3.5 billion for existing NIH Institutes and Centers which is what the Lupus Research Alliance and advocates across the country asked for to continue the progress being made in biomedical research. It also includes $3 billion to establish a new agency, the Advanced Research Projects Agency for Health (ARPA-H), to accelerate the pace of scientific breakthroughs.
Update as of July 15 – Today the House Appropriations Committee passed the Labor, Health and Human Services, Education, and Related Agencies (LHHS) FY 2022 spending bill with $49 billion for the National Institutes of Health (NIH) includes an increase of $3.5 billion for existing NIH Institutes and Centers which is exactly what the Lupus Research Alliance and advocates across the country asked for! While the bill does not specify an amount for lupus, it is anticipated that NIH funding for lupus research will be about $139 million.
Update as of July 29, 2021 –Today, the House Appropriations Committee passed a 7-bill minibus that includes the LHHS bill which includes the $3.5 billion increase for NIH Institutes and Centers as described above.*
Join the Congressional Lupus Caucus and Sign the Letter to Appropriators on Lupus Funding Priorities (House)
The members of the Congressional Lupus Caucus have been leaders in advocating for Congress to invest robustly in research priorities that are critical to the Lupus Research Alliance and all people impacted by lupus. Members of Congress should join the Congressional Lupus Caucus so they can be counted as allies in our fight for a world free of lupus.
The Congressional Lupus Caucus sent a letter to bipartisan leadership of the House Appropriations Committee, asking for robust funding for the DOD Lupus Research Program, and other priorities in the Centers for Disease Control and Prevention (CDC) and Department of Health and Human Services (HHS) that are important to people with lupus.
Congress Considering Lupus Advocacy Requests
*Before the bills become law, the Senate must release its appropriations bills and then the two chambers will meet to create one bill to send to the President for signature.
Thank you for your help in emphasizing to members of Congress why lupus research is so critically important for better lupus treatments and a cure. We will keep you posted on the progress. Continue to check here for updates and any actions we may suggest.