Advocacy Update – December 2023

UMDF Advocacy Update – Dec. 2023

The House is scheduled to be out of session until January, while the Senate is scheduled to remain in session this week to continue to work toward an agreement on funding for Ukraine, Israel, and US border reform, as well as nominations and other non-health-related issues. As Congress heads toward recess for the holiday season, we wanted to reflect on our advocacy work over the past year.

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. Further, UMDF successfully advocated for the inclusion of language in the House and Senate FY 2024 Labor-Health and Human Services (HHS)-Education appropriations report that encourages the National Institutes of Health (NIH) to expand its funding of primary mitochondrial disease research, accelerate its outreach and collaboration with the Food and Drug Administration (FDA) related to research that may lead to future mitochondrial disease-related drug approval, and ensure that the role of mitochondrial impairment is fully explored in the agency’s research portfolio.

Additionally, in September, 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 impact mitochondrial patients and discussed the importance of creating a new pathway for pediatric providers to enroll in multiple state Medicaid programs to improve patient access to specialists.

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). Also due to UMDF member activism, we added co-sponsors to the Medical Nutrition Equity Act (MNEA) and the Accelerating Kids’ Access to Care Act.

Heading into 2024, we will continue to advocate for telehealth as legislation that authorized an extension of many of the telehealth flexibilities that were in place during the COVID-19 public health emergency end on December 31, 2024, without further congressional intervention.  UMDF will also 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 2024. We thank you for taking the time to engage your lawmakers this year. Your advocacy is instrumental in paving the way for advancements in mitochondrial research and ultimately improving the lives of those affected. Thank you for being the voice for those who need it most and championing positive change on Capitol Hill.