Advocacy in Action

Welcome to the UMDF'S Advocacy Action Center

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 4393 - Advancing Access to Precision Medicine Act of 2019

     Introduced by Rep. Eric Swalwell (D-CA) this bill would pilot-test whether
     Medicaid coverage of a variety of types of genetic and genomic sequencing
     for children can help settle their diagnostic challenges, improve
     clinical outco
mes, and ultimately reduce program expenditures.   


                   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.



           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.


                      MASSACHUSETTS RESIDENTS - S603


    Massachusetts Senate Bill 603, if approved, will require health insurance     
    companies operating in the commonwealth to provide coverage for the
    treatment of mitochondrial disease, including, but not limited to, the use of
    vitamins and nutritional supplements, such as,
 CoEnzyme Q10, Vitamin E,
    Vitamin C, Vitamin B1, Vitamin 14B2, Vitamin K1 and L-Carnitine