UMDF Legislation Tracker
Follow legislation impacting the mitochondrial disease community of a federal and state level.
PROTECT MITO RESEARCH UNDER THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP)
Visit the UMDF Advocacy in Action Center now and urge tour Congressman and Senators to sign onto “Dear Colleague” Letters
CDMRP’s highly innovative research portfolio drives scientific discovery in high-impact research areas not sponsored by the National Institutes of Health (NIH) and other federal agencies. Among those peer-reviewed research programs is mitochondrial dysfunction. Research clearly shows that illnesses such as Gulf War Syndrome and traumatic brain injuries are implicated by dysfunctioning mitochondria.
CMDRP has provided more than $11 million to researchers to not only impact treatments cures for these conditions, but could develop potential treatments and cures for the 1 in 4000 people who are born with a mitochondrial disease in the United States.
The “Dear Colleague Letter” is being circulated by our Congressional Mitochondrial Disease Caucus Co-Chair, Rep. Ryan Costello and by Rep. Peter King, Rep. Dave Loebsack, and Rep. Sanford Bishop. It requests that any final National Defense Authorization Act (NDAA) Conference Report legislation excludes four provisions in the Senate-passed FY2018 NDAA (Sections 733, 891, 892, and 893), which would bring the CDMRP to a halt – jeopardizing healthcare for warfighters, veterans, and their families both now and in the future.
Urge your Congressman to join with dozens of his/her colleagues in the House and add his/her name and support to a ‘Dear Colleague letter to the Chairmen and Ranking Members of the House and Senate Armed Services Committees. This letter expresses strong support for the Congressionally-Directed Medical Research Program (CDMRP) at the U.S. Department of Defense (DoD).
There is also a companion letter that is being circulated by Senators Durbin and Blunt — Please send that to your Senator Today!
IMPORTANT — Support Legislation to cover Medical Foods and Supplements
There are two pieces of legislation in both the house and senate that need the attention of those in the mitochondrial disease community.
In the house, H.R. 2587, if enacted, would provide for the coverage of medically necessary food and vitamins for digestive and inherited metabolic disorders under Federal health programs and private health insurance, and for other purposes. This measure carries 9 co-sponsors. We urge you to call or send a letter in the action center to your House member asking him or her to co-sponsor HR 2587, or help in any way to get this measure through. You may also want to discuss in financial terms your monthly ‘out of pocket’ costs.
In the Senate, a similar bill, S.1194, was introduced by Senator Robert Casey (D-PA) and Senator Chuck Grassley (R-IA). Senator Sherrod Brown (D-OH) has agreed to co-sponsor. We need you to call your Senators or send a letter asking them to support and/or co-sponsor the ‘‘Medical Nutrition Equity Act of 2017’’.
You may also click here to enter the UMDF Advocacy in Action Center and send a letter to your Congressman and Senators.
The letter can be edited so that you can add personal ‘out of pocket’ details.
New Congressional Caucus Co-Chair
UMDF thanks The Honorable Brian K. Fitzpatrick (R-PA-08) for enthusiastically agreeing to serve as co-chair for the Congressional Mitochondrial Disease Caucus. Rep. Fitzpatrick will join with The Honorable Jim P. McGovern (D-MA-02) to provide leadership for this bi-partisan caucus!