You Spoke and Congress Acted
You Spoke and Congress Acted

March 15, 2022

Each year, Congress must allocate funds for the following year’s budget, and every year, we lead the advocacy effort for the additional funding needed for lupus research to produce better treatments and eliminate racial disparities in healthcare. Last March lupus advocates joined the LRA to submit formal Congressional Asks for Fiscal Year (FY) 2022. After 12 months of emails and phone calls from lupus advocates and others, Congress acted and today President Biden signed into law the omnibus bill that will fund federal government agencies for the remainder of Fiscal Year 2022.

The key achievements for lupus research included in the omnibus bill are:

Maintained budget allocation of $10 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 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.

Report Accompanying Agriculture Funding Bill included following LRA-Supported Language Urging the FDA to Expedite Lupus Drug Development

Only two drugs approved by the U.S. Food and Drug Administration (FDA) were specifically developed for lupus. That’s partly because 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.

Requests by LRA advocates and others succeeded in getting the following language included in the report to the FDA that accompanied the Agriculture Funding Bill.

“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.” 

Increased Budget for the National Institutes of Health (NIH) Allocates $45 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. Congress increased the budget by $1.5 billion to continue the effort to offset years of declining funding at the agency. Estimated lupus research funding for FY 2022 is $139 million.

Lupus research did well in the 2022 U.S. budget, and we are aiming to do even better for 2023.  Click here to get involved and stay informed on our progress.

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