Advocacy Update – December 2022: Mito Research Funding Looks Headed for Renewal in Newly Unveiled Funding Bill

On Tuesday, December 20, 2022, lawmakers unveiled their long-awaited $1.7 trillion government funding package. The package includes 12 appropriations bills, including the Defense Appropriations bill. Thanks to our advocacy efforts, mitochondrial disease continues to be included in the Defense Appropriations bill as one of the areas of medical research eligible for the Peer-Reviewed Medical Research Program. Our continued inclusion in the program has provided millions of dollars in funding for valuable research in understanding the genetic determinants of mitochondrial disease, its effects on respiration and brain function, and new targeted therapies to treat mitochondrial disease.

Additionally, on November 15 and 16th, the UMDF held a virtual Capitol Hill Day with over 50 congressional offices. UMDF members shared their stories and expressed how Congress’s decisions around medically necessary food and telehealth impact mitochondrial patients.

As a result of our efforts, additional members have signed up to join the Congressional Mitochondrial Disease Caucus, led by Congressmen Jim McGovern (D-VA) and Brian Fitzpatrick (R-PA). Because of UMDF member activism, we also added additional co-sponsors to the Medical Nutrition Equity Act (MNEA) of 2021 (S. 2013/H.R. 3783), bringing the new total to 105 cosponsors in the House and 24 in the Senate. A two-year extension of telehealth flexibilities was also included in the year-end omnibus package – providing mitochondrial patients the ability to receive care in their homes and access specialists regardless of where they live.

Heading into the new Congress in 2023, UMDF will continue advocating for programs, funding, and legislation that promote research and education to diagnose, treat, and cure mitochondrial disorders. We will update UMDF members on opportunities to engage their congressional delegation via action alerts and future virtual fly-ins in 2023. We hope you join us and share your stories, as doing so clearly effectuates positive change, as evidenced by our most recent Capitol Hill Days.

REMINDER! If you missed being a part of 2022 visits, it’s not too late to help. You can: