Your voice is critical when it comes to educating Members of Congress about the needs of the patient community. Please check back periodically for updated UMDF 'Legislative Action Items that require your attention. Remember, voices in number get things done -- so after you participate, please share with friends and family and ask them lend their voices, too!
Current Action Items
HR 2501 - Medical Nutrition Equity Act of 2019
Introduced by Rep. Jim McGovern (D-MA) and Jaime Herrera Beutler (R-WA),
H.R. 2501 would ensure that medically necessary foods are covered under
Medicaid, the Childrens Health Insurance Program (CHIP),
Federal Employees Health Benefits (FEHB), and private insurance so
that patients who need them can get them without a tremendous financial
HR 4414 - Ending the Diagnostic Odyssey Act
Rep. Scott Peters (D-CA) and Rep. John Shimkus (R-IL) introduced
the bipartisan “Ending the Diagnostic Odyssey Act” to provide federal
support for the use of whole genome sequencing to diagnose children
who are ill. The bill would create a pilot program to cover 75 percent
of the costs of a child’s whole genome sequencing through
Medicaid for the first three years.
'Dear Colleague Letter' Sign On In The House
Rep. Jim McGovern (D-MA) and Rep. Brian Fitzpatrick (R-PA) are circulating a
‘Dear Colleague Letter’ for House Members. The letter is requesting that NIH
convene a follow-up workshop on mitochondrial disease and dysfunction to
review the significant progress that has been made and identify next steps.
The last NIH workshop for mitochondrial disease and dysfunction was in
2012. The letter aks for signatures on a letter requesting NIH Director Francis
Collins convene a follow up workshop.
Ask Your Congressman/woman To Join The Caucus The Congressional Mitochondrial Disease Caucus launched in June of 2012.
Currently, Rep. Jim McGovern is our democratic caucus co-chair. Our republican
caucus co-chair is Rep. Brian Fitzpatrick (R-PA). The Caucus serves as a forum
for members of Congress and their staffs to learn about mitochondrial disease
and related illnesses. To date, several very important briefings that have detailed
mitochondrial disease and its impact on children and adults.