State and Federal Advocacy for the Mitochondrial Disease Community 2018-05-25T12:59:55+00:00

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 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!

CALIFORNIA RESIDENTS — MITO COCKTAIL PETITION
Sign this petition asking the State of California to require health insurance companies to cover the cost of the Mito Cocktail. Click here to sign the petition!

MASSACHUSETTS RESIDENTS —MITO COCKTAIL COVERAGE REQUEST
H571 is proposed legislation to provide residents, their spouse or dependants insured under the group insurance commission, to have the mito cocktail covered.
Click here to take action!

NEW YORK STATE RESIDENTS — MITO COCKTAIL COVERAGE IMPACT
S7826 is an ACT to amend the insurance law, in relation to directing the New York state health care quality and cost containment commission to study and report upon the impact of requiring that certain health insurance plans provide coverage for treatment of mitochondrial disease.
A2850 is the companion bill the the State Assembly.  Click here to take action on both!

WEST VIRGINIA RESIDENTS —MITO COCKTAIL COVERAGE REQUEST
SB478  is proposed legislation to provide residents insured under the group insurance mito cocktail coverage.
Click here to take action!


UMDF LEGISLATION TRACKER

Use this tool to review and research important state and federal legislation for our community.

FEDERAL LEGISLATION NEEDING YOUR ATTENTION!

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

HR 1515 – 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.     Mitochondrial Disease affects me and my family.   As patients and caregivers, we find it incredibly difficult to find a way to get an accurate diagnosis or treatment.   There are no cures for mitochondrial disease and it impacts both children and adults.

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).

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.   Click here to advocate for HR 5062


Open Act

Despite advances made by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no FDA-approved treatment. Biopharmaceutical companies seldom consider repurposing already approved therapies to treat rare diseases because there is little incentive for them to do so. The OPEN ACT establishes an exclusivity extension, which would provide an additional six months of market exclusivity for the drug being repurposed for rare disease treatment. The sponsor company must demonstrate that the repurposed therapy is designated to treat a rare disease and obtains an approved rare disease indication from the FDA on the drug label.  Repurposing drugs is faster, cheaper, and presents fewer risks than traditional drug development.
Visit the Action Center Now to ask your Senator and House Member to co-sponsor this important Legislation!


The National Biomedical Research Act of 2017

Senator Elizabeth Warren (D-MA) introduced this legislation on December 7, 2017. The National Biomedical Research Act would create a new funding stream, the Biomedical Innovation Fund, which would provide $5 billion per year in new funding for select initiatives at our nation’s top research institutions, NIH, and FDA.   Currently, several senators have agreed to co-sponsor this legislation and several patient advocacy organization, including the UMDF, have let the Senator know that we will support her legislation because of the proposed increase at the NIH and FDA and because it would provide research funding for scientists who work in lesser known fields like mitochondrial medicine.  Show you support now by visiting the Action Center.  You can write, call, or use social media to ask your Senator to co-sponsor if he or she hasn’t.

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.

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.