Advocate 2017-12-08T09:44:21+00:00

Advocate

The United Mitochondrial Disease Foundation is committed to increasing funding for mitochondrial disease research now – to alleviate the suffering of thousands who have this debilitating and often fatal disease and to develop better understanding of and treatments for the many common illnesses and chronic conditions associated with it.

To expedite this action and ensure Congress, the medical community and the general public understand the importance of mitochondrial disease research, we must call on our the affected community, their friends and families, to advocate for all.

UMDF Legislation Tracker

Follow legislation impacting the mitochondrial disease community of a federal and state level.

YOUR ADVOCACY WORKS!
Because of your calls and letters to Congress, mitochondrial disease has been added to the Congressionally Directed Medical Research Program (CDMRP) for another year.   More than 300 patients, families and friends visited the UMDF Action Center and let the House and Senate know how important this measure is for our community.   There were calls for CDMRP to be terminated.
Why is this important to patients and families?  The CDMRP, which is included in the Defense Department Authorization Bill, provides $300,000,000 for medical research into numerous diseases and conditions, including mitochondrial disease.   Over the past several years, $18 million has been allocated to mitochondrial disease.   The Department of Defense recognizes that research into mitochondrial dysfunction may help our veterans who battle Gulf War Syndrome and Traumatic Brain Injury.  Research into these issues could provide potential treatments and cures for those who battle mitochondrial disease.

UMDF IS WATCHING THESE ITEMS THAT IMPACT PATIENTS AND FAMILIES


IMPORTANT FOR CALIFORNIA RESIDENTS

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!

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.

Proposed Repeal of the Medical Expense Deduction in the House

The bill in the U.S. Senate does not touch this important deduction for our patient community.   In the House, the bill is vastly different.  Some members in the House are seeking to remove the deduction.  We are watching this and will let you know if your voice is needed on this important issue.

ORPHAN DRUG TAX CREDIT IN DANGER

When the Senate passed its version of the Tax Cuts and Jobs Act, the Orphan Drug Tax Creidt was left at 27.5%.  The House can now decide to keep the Senate’s rate, repeal the tax entirely, or settle on something in between.  Check back in the UMDF Action Center for ways that you can let your House Member know that we would like that credit to stay at 27.5%.

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?

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.
  • Mitochondrial Disease Fact Sheet– (PDF)
    This document describes mitochondrial disease, incidents and prevalence and links to other diseases.  This is a document that can be sent to or left with elected officials, or given to the media.
  • 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.