NEED HELP WITH ADVOCACY IN YOUR STATE?
Visit our State Advocacy Resource Page
– Scroll down and review the UMDF Legislative Tracker to see all state and federal legislation that impacts the Mitochondrial Disease Community.
– Scroll down for the UMDF Advocacy Tool Kit and meeting preparation sheets should you schedule a meeting with elected officials.
– Can’t find what you need? Contact UMDF via email or call 888-317-8633
REMEMBER — We can only help support statewide efforts that you tell UMDF about. Let us know about any pending legislation you secured or bills that need state and community support. With that information, we can help mobilize the entire community in your state through eblasts and other ways to garner support and help you be successful!
UMDF IS WATCHING THE FOLLOWING STATE LEVEL LEGISLATION
Make sure you take action in the UMDF Advocacy Action Center on state issues that apply to you!
Check back for the introduction of new bills for the 2019-20 session.
UMDF LEGISLATION TRACKER
Use this tool to review and research important state and federal legislation for our community.
Current “Asks” for your House and Senate Members
► HR 4144 – Ending the Diagnostic Odyssey Act
Rep. Scott Peters (CA-52) and Rep. John Shimkus (IL-15) 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, incentivizing states to cover the remaining 25 percent. This investment in diagnosing illnesses more directly and quickly will reduce medical costs in the long run. Take action on this issue now.
► HR 2501 – The Medical Nutrition Equity Act of 2019
This measure was introduced by Rep. Jim McGovern (D-MA) and Rep. Brian Fitzpatrick (R-PA) in May of 2019. See the entire bill and members of Congress who have signed on as co-sponsors here.
Why this matters to you and your family.
- While there is no cure for mitochondrial disease, many types of the disease are responsive to specific vitamin and supplement therapies. HR 2501 will cover medically necessary foods and vitamins for patients with mitochondrial disease under federal health programs and private insurance.
- In many cases, out of pocket expenses for families can range from $300 to more than $1,000 per month. Therefore, MNEA would greatly help mitochondrial patients afford their vitamins and supplements used as therapies in the treatment and management of mitochondrial disease and dysfunction.
How you can be involved.
In order for this legislation to move forward in the House, it need co-sponsors. If they are not a co-sponsor, ask your Representative to sign onto HR 2501.
You visit the UMDF Advocacy Action Center now and email a letter, make a phone call, or send a post on social media urging your House Member to co-sponsor this important legislation.
Help needed in the U.S. Senate
Senator Robert Casey (D-PA) has indicated he may be willing to introduce a companion bill in the U.S. Senate. Sen. Casey needs a Republican Senator to introduce the measure with him.
– If you live in a state with a Republican U.S. Senator, ask if he/she will join Senator Casey in introducing a companion bill to HR 2501 in the U.S. Senate.
– Check back often. Once the measure is introduced in the Senate, we will need you to help us build co-sponsors.
► Ask Congress n to join our ‘Dear Colleague’ Letter
Rep. McGovern and Rep. Fitzpatrick, who chair our Congressional Mitochondrial Disease Caucus, have authored a letter to thank the National Institutes of Health (NIH) for their work in mitochondrial medicine and to convene a workshop for our scientific and medical community. A similar letter is being circulated in the Senate by Senator Bob Casey (D-PA) and Senator Bill Cassidy, MD (R-LA). The workshop will be designed to work towards the elimination of barriers towards treatments and cures.
Why this is important.
- The letter asks Dr. Francis Collins at the National Institutes of Health to enable the NIH to take the lead in organizing a follow-up workshop to bring together stakeholders from within the NIH, the extramural research community, Food, and Drug Administration (FDA), the Centers for Disease Control (CDC), patients, families, and industry. The NIH has not convened such a workshop since 2014.
- Such a workshop could identify the progress to date and articulate next steps in areas such as the need for improved diagnostic tools, outcomes measures, data integration, and a deeper understanding of nutritional interventions
►Congressional Mitochondrial Disease Caucus.
If your Congressman/woman is not already a member of the Congressional Mitochondrial Disease Caucus, ask him/her to join.
You can find our most current list of bi-partisan caucus members here. You can download an invitation for your House member here and then print or email the invitation to your Congressman/woman.