Every year, UMDF, with help from the Congressional Mitochondrial Disease Caucus (co-chaired by Reps. Fitzpatrick (R-PA) and McGovern (D-MA) work to educate Congress on federal funding priorities for mitochondrial disease. Specifically, we advocate for including mitochondrial disease as an area of medical research eligible for the Department of Defense (DoD) Peer-Reviewed Medical Research Program. Due to this inclusion, there has been at least $60 million in funding for mitochondrial disease through the DOD’s Peer-Reviewed Medical Research Program since 2015. We also advocate for the National Institutes of Health (NIH) to prioritize mitochondrial disease research. These efforts have advanced NIH workshops and prioritized NIH research over the years.
Every year, Congress passes appropriations bills to fund the government. The budgeting process is supposed to start the first Monday in February; however, often, the budget submission is delayed. This year, on March 9, 2023, President Biden published his FY 2024 budget. The president’s FY 2024 budget request is the first step in the federal budget process. While the president’s budget request is a non-binding document, it tells Congress the President’s recommendation for overall federal fiscal policy and policy priorities for the upcoming year. Congress is supposed to pass the budget resolution by April 15, but it often takes longer. From there, the Appropriations Committee solicits funding requests from members of Congress.
This is where UMDF comes in as members of Congress rely on stakeholders they represent to tell them which federal funding efforts to prioritize, which is why UMDFs engagement on DoD and NIH issues has been critical year after year. Next, the House Appropriations subcommittees begin hearings, release their spending bills publically, and amend them. The Senate also considers its appropriations bills. Over the summer, the Appropriations Committees finalize each of the 12 appropriations bills to send to the chamber floor for a vote. In the fall, a conference committee negotiates compromises for any appropriations bills that still need to pass both chambers. If all 12 appropriations bills have yet to pass Congress before October 1, Congress may pass a continuing resolution (CR) to fund the government at the previous fiscal year’s spending levels. Often, Congress will pass a CR to buy more time to negotiate full-year appropriations bills.
While the process is complex, it has yielded great success in funding and prioritized research for mitochondrial disease. This appropriations cycle, UMDF continues to advocate for the inclusion of mitochondrial disease in the DoD Peer-Reviewed Medical Research Program (an exercise we have to do annually to be retained in the program). We are also focusing our appropriations efforts on language that directs the National Institutes of Health (NIH) to expand funding of primary mitochondrial disease research, ensure that the role of mitochondrial impairment is fully explored in the Institute’s Long COVID research portfolio, and competitively fund at least one mitochondrial disease center of excellence to centralize a critical mass of research, clinical care, and provider education.
UMDF members interested in being part of this effort are encouraged to contact their congressional offices and ask that they prioritize these requests. The UMDF and Holland & Knight team stand ready to help you with this effort.