Advocacy Update – May 2024: FAA Reauthorization, Telehealth, Accelerating Kids’ Access to Care Act, and more

Nearly a decade ago, thanks to UMDF advocates, mitochondrial disease became an eligible topic in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). The program has since provided more than $70 million in federal funds for mitochondrial disease research.

At this year’s Mitochondrial Medicine Conference in Cleveland, you’ll get the chance to see some of those funds in use first-hand.

In 2022, Children’s Hospital of Philadelphia (CHOP) was awarded PRMRP funds to develop and validate minimally invasive or noninvasive diagnostic techniques to quantify mitochondrial function in living people. As part of that award, this year’s MitoMed attendees can participate in CHOP studies in the Clinical Research Pavilion focused on breath testing and pupillometry to measure mitochondrial function.

Studies like this are already having a real-world impact in the medical community and may hold the key to unlocking future clinical trial success. You can see the results of last year’s Clinical Research Pavilion using the video links below.

Keep emailing. Keep calling. Keep visiting. Your voice makes a difference.

 March Ask The Mito Doc – Clinical Research Pavilion Update: 2023 Results & What to Anticipate for 2024

 April Bench-to-Bedside – Clinical Trial Readiness: Recapping 2023 Clinical Research Pavilion Results & Previewing 2024

House Energy & Commerce Health Subcommittee Advances Telehealth and the Accelerating Kids’ Access to Care Act

The House Energy and Commerce Subcommittee on Health marked up a slate of healthcare proposals last week, including legislation to extend Medicare patient access to pandemic-era telehealth flexibilities for two years, which is set to expire in December. The Telehealth Modernization Act of 2024 (H.R. 7623) was unanimously advanced to the full committee for consideration. While similar to the telehealth extension bill advanced by the House Ways and Means Committee last week, the bills are not identical, necessitating further work before a telehealth extension bill will reach the House floor for a vote. Expansion of telehealth flexibilities continues to be a top congressional priority for UMDF, as many mitochondrial patients have to travel significant distances to see specialists in the field. The burden of travel, in some instances, has been remedied by the telehealth flexibilities temporarily advanced as a result of the COVID-19 Public Health Emergency.  Accordingly, UMDF will continue to push for congressional support to extend these critical flexibilities.

Additionally, at the Energy and Commerce markup, the Accelerating Kids Access to Care Act (H.R. 4758) was advanced. The bill would be of great benefit to children on Medicaid with rare and medically complex conditions like mitochondrial disease who often must travel to different states to receive care from medical specialists not available in their home state.  The bill creates a new pathway for pediatric providers to enroll in multiple state Medicaid programs if specific requirements are met.  UMDF continues to advocate for the passage of this vital bill.

From streamlining Medicaid processes to ensure children get the necessary out-of-state care they need to extending critical telehealth access, these bills (if enacted into law) will contribute to significant improvements in access to care for mitochondrial patients.

FAA Reauthorization Includes Protections for Passengers with Disabilities 

President Joe Biden signed a five-year reauthorization of the Federal Aviation Administration (FAA) following House passage of the FAA legislation last week. Crucial provisions of the legislation include mandates for:

  • Comprehensive aircraft personnel training in proper handling of motor wheelchairs during boarding and deplaning
  • Ensuring improved seating arrangements for passengers with disabilities
  • Reserving onboard wheelchairs to facilitate mobility

Additionally, the law enhances aircraft evacuation procedures, prioritizing the safety of passengers with disabilities. The Act also requires the FAA to promulgate a rulemaking related to aircraft first aid and emergency medical kit equipment and training to consider whether the current requirements for minimum contents of emergency medical kits include appropriate medications to address certain emergency medical needs such as anaphylaxis.