Federal and State Advocacy Opportunities

UMDF is committed to empowering our entire community through governmental advocacy.  We will work with you on the federal and state level to help educate and impact decisions that address the needs of the entire mitochondrial disease patient community.

NEED HELP WITH ADVOCACY IN YOUR STATE?
Visit our State Advocacy Resource Page


ADDITIONAL SUPPORT:

– 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

►HR4393 – Advancing Access to Precision Medicine Act of 2019

Introduced by Rep. Eric Swalwell (D-CA), this legislation 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 outcomes, and ultimately reduce program expenditures.  It also would direct the Department of Health and Human Services to work with the National Academy of Medicine to study, utilizing the information gained from the Medicaid pilot-testing, how genetic and genomic testing may improve health outcomes and how the federal government may reduce barriers to use of genetic and genomic testing.  Often times, mitochondrial disease patients begin a long journey towards diagnosis.  Patient families face many barriers that impede them from access to genetic and genomic testing including the lack of insurance coverage and the inability to see relevant health professionals.  H.R. 4393 has the potential to further the field of precision medicine —the customization of healthcare, with medical decisions, treatments, practices or products tailored to the individual patient—and to cut health care costs by allowing better diagnoses and consideration of preventive measures.  Take action on this issue now.

► 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.

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.

What can you do now?

  • Don’t know who your Congressman is?  Not a problem, just click here and provide your address and learn who represents you in Washington, D.C.

  • Is your Congressman is a member of the UMDF’s Congressional Mitochondrial Disease Caucus? If not, ask him/her to join!  Click here to see the complete list.

  • Start a grass roots campaign in your state on a number of issues — find out how to begin here.

  • Vists the Action Center link below and start making your voice heard today!

VISIT THE UMDF ADVOCACY ACTION CENTER

Want to learn more about how to advocate?

Advocacy Help
To assist you in your advocacy, we are pleased to present a toolkit which provides guidelines for working with elected officials and for engaging the media.  Included are fact sheets, talking points, sample letters and sample media materials to give you everything you need to begin your advocacy campaign.

You are our best advocate.  It is critical that we tell the UMDF story and your individual stories to a much broader audience.  Our messages must be consistent and clear in order to make mitochondrial disease more readily recognizable and to create a sense of urgency among policy makers and the medical community.

Materials have been developed for you to download and to help you convey important, easy to understand information about the disease and the need for additional research.

Thank you for your support!

Advocacy Toolkit

WANT TO LEARN MORE ABOUT HOW TO ADVOCATE? To assist you in your advocacy, we are pleased to present a toolkit which provides guidelines for working with elected officials and for engaging the media. Included are fact sheets, talking points, sample letters and sample media materials to give you everything you need to begin your advocacy campaign. These materials have been developed for you to download and to help you convey important, easy to understand information about the disease and the need for additional research.

Thank you for your support!

  • Advocacy Toolkit (PDF)
    This booklet contains all of the documents below.
  • About UMDF
    This document describes the UMDF mission and goals and can be downloaded for elected officials and media who need more information about the national organization.
  • Links to other diseases
    Defects in mitochondrial function are at the core of many common diseases and conditions.  This document provides the links these diseases.  This is a document that can be sent to or left with elected officials, or given to the media.
  • Frequently Asked Questions
    This document provides the answers to many of the questions asked about mitochondrial disease.  This is a document that can be sent to or left with elected officials, or given to the media.
  • Talking Points
    This document provides the message that we all must use when speaking to elected officials and to the media.  Core messages are bolded.  Below each core message are additional points that you may add.
  • Working with Elected Officials
    Information about contacting and communicating with elected officials.
  • Sample Letter to Elected Officials
    You can view a sample letter to an elected official, or download the information into a Word Document, so that you may copy and paste to create and personalize your own letter.  Please include personal stories.
  • Working with the Media– (PDF)
    Information on how to contact the media to promote stories and information happening in your state or community.
  • Writing a Letter to the Editor– (PDF)
    Sample Letter to the Editor– (Word Document)
    Tips on writing a letter to the editor of your local paper.  You can also copy and paste a sample letter.  Make the letter personalized with your information as well.
  • Writing an Op/Ed Piece – (PDF)
    Sample Op/Ed Piece– (Word Document)
    Tools to detail the creation of an Op/Ed piece for your local newspaper.  You can also copy a sample op/ed piece to use after you’ve added your personalized information as well.
  • Sample Media Advisory– (PDF)
    A sample of a media advisory to help you create media awareness is available.  ALL RELEASES AND ADVISORIES MUST BE SUBMITTED TO THE UMDF NATIONAL COMMUNICATIONS OFFICE BEFORE THEY ARE SENT TO THE MEDIA.
  • Sample Press Release– (PDF)
    For your use in structuring a media release.  ALL RELEASES AND ADVISORIES MUST BE SUBMITTED TO THE UMDF NATIONAL COMMUNICATIONS OFFICE BEFORE THEY ARE SENT TO THE MEDIA.
  • Additional Resources– (PDF)
    Links to other web sites that may be helpful.