State and Federal Advocacy for the Mitochondrial Disease Community2019-01-04T12:07:26+00:00

Federal and State Advocacy Opportunities

UMDF is committed to empowering our entire community through governmental advocacy.  Our next “Day on the Hill” is schedule for June 27, 2019. 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 as part of the “Roadmap to a Cure”.

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.

Share your voice for our community during “Awareness Week”!

Make sure you visit the UMDF Advocacy Action Center and let your voice be heard on these important issues!

 RARE ACT
This bipartisan legislation was introduced by Congressman. Andre Carson (D-IN) and by Congressman Ryan Costello (R-PA) on Rare Disease Day, February 28, 2018.   As patients and caregivers, we find it incredibly difficult to find a way to get an accurate diagnosis or treatment.  it expired on December 31, 2018.  We will let you know when it is re-introduced and how you can support.

The RARE Act will help our community and 10 million Americans nationwide who are impacted by rare disease.  It will enhance an existing and successful program of the National Institutes of Health (NIH), the Rare Diseases Clinical Research Network. This unique Network is made up of 21 research ‘centers of excellence’ studying rare diseases in an interdisciplinary way, working with patients and others on clinical studies and other research.

HR 5062 – Advancing Access to Precision Medicine Act

Rep. Eric Swalwell (CA-15)  introduced the bipartisan Advancing Access to Precision Medicine Act, to push forward use of genetic and genomic testing to improve and save lives.  The bill’s original cosponsors are Rep. John Shimkus (IL-15), Rep. Scott Peters (CA-52), Rep. Erik Paulsen (MN-03), and Rep. Juan Vargas (CA-51).  This bill expired on December 31, 2018.   Check back and we will let you know if it is to be reintroduced.

Innovation in genomics has presented new opportunities to diagnose and treat genetic disorders most rare diseases, as well as to predict predisposition to a disease. Genetic and genomic tests have the potential to further the emerging 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.

But barriers including the lack of insurance coverage and inability to see relevant health professionals often impede access to genetic and genomic testing. The opportunity for a healthier America will be limited in the future unless patients have affordable access to such testing. With last year’s enactment of the 21st Century Cures Act – which streamlines the Food and Drug Administration’s drug and medical device approval process, and advances the Precision Medicine Initiative and Cancer Moonshot – we must do more to ensure innovative technologies are used effectively.

The Advancing Access to Precision Medicine Act would direct the Department of Health and Human Services to enter into an agreement with the National Academy of Medicine to develop recommendations on how the federal government may reduce barriers to the utilization of genetic and genomic testing.

The bill also would let states to apply for an exception to the federal medical assistance percentage rate (FMAP) to provide whole genome sequencing clinical services for certain children on Medicaid who have an unresolved disease that is suspected to have a genetic cause. The purpose is to study whether such services help settle a child’s diagnostic odyssey, improve clinical outcomes, and ultimately reduce program expenditures.

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– (PDF)
    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– (PDF)
    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– (PDF)
    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 (PDF)
    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– (PDF)
    Information about contacting and communicating with elected officials.
  • Sample Letter to Elected Officials– (Word Document)
    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.