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MG Patient Advocacy

 

Making Our Combined Voices Heard

The MG Community faces challenges that impact how we live our lives with myasthenia. In order to overcome those challenges, we must come together and make sure our voices are heard clearly at all levels of government, across the medical and insurance communities, and around the world.

 

Our MG Voice is the MGFA’s ongoing MG patient advocacy program that puts the future of our community in your hands. The call to action? We ask you to step up and engage in activity that could make a huge difference in people’s lives.


We do so much to help drive action and results that can help our community:

  • Write to Congress to ensure rights for rare disease patients.
  • Work to submit and obtain a government proclamation recognizing MG.
  • Drive important alerts across the community and build awareness.
  • Join efforts to influence insurance carriers to appropriately cover MG patients.
  • Pitch journalists to drive awareness in the media.
  • Meet with political figures to communicate the needs of those with MG.

To learn more and become part of this national advocacy team, please reach out to Genna Mvalo at the MGFA – gmvalo@myasthenia.org.

 

Latest Advocacy Alerts and Actions

 

Take New Survey about Financial Impact of Living with MG

We want to hear from the MG community about the financial impact of living with the diagnosis.

We are looking for Myasthenia Gravis (MG) patients, caregivers, and families to provide information which will inform policy makers, healthcare decision makers, and the public about the long-term financial impact of living with MG on individuals and families. Our goal is to hear from as many individuals in the MG community as possible.

Take this NEW SURVEY before December 5, 2021 to provide your valuable information. It should take approximately 20 minutes to complete and your responses are confidential.

Take the Survey

 

This survey is being conducted with support from argenx. Read the attached MDA survey flyer.

View the Flyer

 

ACTION ALERT - Push for Faster Medical Progress

Avoid Continuing Resolutions: Push Congress to Fight for Faster Medical and Health Progress

On September 30, Congress passed (and the President signed into law) a "Continuing Resolution" (CR) averting a government shutdown by flat-funding federal agencies through December 3. That date should not be interpreted as a reason to wait on completing the FY22 appropriations process, which would mean waiting to apply more resources to the fight against deadly and debilitating health threats. MGFA joined a sign-on letter to congressional leaders asking them not to wait until December, but to assign urgent priority to setting funding levels for FY22, making the case that CRs stymie desperately-needed faster medical, health, and scientific progress. 88% of Americans believe it is important for the President and Congress to assign a high priority to ensuring faster medical progress. The dangerous impact of CRs is clear: in the science & technology realm, CRs stall progress. Call your members of Congress to make sure FY22 appropriations are finalized soon so we can avoid future CRs. VIEW THE OFFICIAL LETTER and contact your members of Congress TODAY.

 

ACTION ALERT - Participate in NORD Action Alert to Eliminate Proposed Build Back Better Act Changes

Tell Congress to Protect the Orphan Drug Tax Credit!

Congress is considering passing a portion of the Build Back Better Act, which included language to amend the Orphan Drug Tax Credit (ODTC) in ways that would severely undermine efforts to ensure more patients have access to a safe and effective drug for their rare condition. Please reach out to your legislators and ask them to leave the proposed changes to the Orphan Drug Tax Credit out of the final version of the Build Back Better Act. Eighty-seven organizations representing individuals living with rare diseases in the U.S. signed a letter to ask Congress to remove the provisions related to the Orphan Drug Tax Credit. This new provision would undermine the Orphan Drug Act (ODA) by limiting the availability of the Orphan Drug Tax Credit (ODTC) to only the first approved orphan use of a drug. Given that more than 90% of rare diseases lack an FDA-approved drug, this proposal would have a devastating impact on orphan drug development in the U.S. and the millions of rare disease patients our organizations represent who continue to hope for a therapeutic option that treats their condition. Call your members of Congress today.

Take UP THIS ACTION ALERT TODAY that was prepared by NORD.

READ HOUSE OF REPRESENTATIVES LETTER.

READ SENATE LETTER.

 

ACTION ALERT – Improve Seniors’ Access to Care:

Improve Senior’s Timely Access to Care Act

Please join with the American Academy of Neurology to: Take action now to TELL YOUR members of Congress to #FixPriorAuth by cosponsoring the Improving Seniors’ Timely Access to Care Act.

 

The legislation would streamline the prior authorization (PA) process in Medicare Advantage (MA) and increase transparency by: 

  • Establishing an electronic prior authorization (ePA) program and require MA plans to adopt ePA capabilities.
  • Requiring the secretary of Health and Human Services to establish a list of items and services eligible for real-time decisions under an MA ePA program.
  • Standardizing and streamlining the PA process for routinely approved items and services.
  • Ensuring PA requests are reviewed by qualified medical personnel.
  • Increasing transparency around MA PA requirements and their use.
  • Protecting beneficiaries from any disruptions in care due to PA requirements as they transition between MA plans.

The bill comes with the strong endorsement from the Regulatory Relief Coalition, of which the AAN is a member.

 

ACTION ALERT - Please Take Action:

Ask your Senators to support NIH funding today!

Right now, Members of Congress are working on funding for federal agencies, including those most important to rare disease patients. Research done by the National Institutes of Health (NIH) has led to some of the most exciting scientific discoveries of all time. Many treatments for rare diseases have been developed from the work done by NIH, and it is critically important to ensure that the NIH is well funded in order to drive innovation for current and future generations.

Senators Bob Casey (D-PA) and Richard Burr (R-NC) are circulating a "Dear Colleague" letter asking their fellow Senators to sign onto a letter supporting robust funding for the NIH. Join NORD and contact your Senator NOW and ask them to join the fight for strong NIH funding.

Take Action! You can use this handy NORD Take Action Link to write to your senator today.

 

Archived Action Alerts - No Longer Active

NORD – Do You Need Health Insurance?

If you do not currently have health insurance coverage, the federal government has opened a SPECIAL ENROLLMENT PERIOD from now until August 15th for plans on the Affordable Care Act marketplace. Enroll in or change plans with more savings due to the COVID-19 emergency through August 15, or anytime if you have certain life changes or qualify for Medicaid or CHIP. Enroll Today at this link. https://www.healthcare.gov/

Additionally, the American Rescue Plan signed into law in March by President Biden has made increased subsidies available to help make quality health insurance more affordable. Check out your options on healthcare.gov by August 15th and spread the word on social media with this toolkit.

 

EveryLife Foundation Hosting Virtual Rare Disease Week

Looking for MG Community members to join

The EveryLife Foundation will be hosting virtual Rare Disease Week from July 14-22. It would be great to get MG participants from across the U.S. to participate. There is some pre-event training to take place starting on June 22, and we would love to see our community participate.

 

The following link will take you to the REGISTRATION PAGE: https://everylifefoundation.org/rare-advocates/rare-disease-week/

Note that the deadline is June 18, so move quickly to be part of this amazing opportunity to represent the MG Community in the Capitol.  

 

 

MGFA Advocates for the STAT Act: Volunteers Should Contact Members of Congress

The United States House of Representatives and Senate have introduced the Speeding Therapy Access Today (STAT) Act of 2021 (Bill H.R. 1730/S,760). This is exciting because MGFA advocated for the need of the STAT Act during the March 2021 Rare Across America advocacy meetings with political leaders.

 

The STAT Act is a bipartisan bill aimed at improving the development and access to therapies for rare disease patients like those with myasthenia. The MG Community would greatly benefit if this becomes a law.

 

The Every Life Foundation has a great article on it here: Congress Introduces the Speeding Therapy Access Today Act | EveryLife Foundation for Rare Diseases

 

As part of our MGFA Our MG Voice action alert, we ask that you contact your regional members of Congress in the House and the Senate and ask them to read and pass the STAT Act as soon as possible. Since this is a bipartisan effort, we hope our efforts can help move this to pass.

 

The Every Life foundation has a clickable link to help you take action and contact your political leaders: Take Action | EveryLife Foundation for Rare Diseases

 

MGFA Signs Letter to President Biden in Support of the RISE Act for Increased Research Investment.

Through Research!America , MGFA has signed a letter to President Joseph Biden in support of the RISE Act also known as the Research Investment to Spark the Economy Act ( Bill H.R. 869/ S. 289) asking the United States to invest in scientific research as part of the next spending vehicle he advances as part of his agenda. The full letter can be found here: https://www.researchamerica.org/sites/default/files/Sign%20on%20letter%20to%20Biden%20%28RISE%20Act%29.pdf

 

MGFA Partners with Rare Across America for Rare Disease Day and Political Leader Discussion

The week of March 1, 2021, 10 MG advocates volunteered their time to participate in RARE Across America hosted by the EveryLife Foundation for Rare Diseases. The volunteers had meetings with Senators and Representatives to discuss key advocacy issues. Meetings were held virtually, and advocates were paired with other advocates from their state or local district.

Check out what our volunteers said about their experience!

 

MGFA Supports Dr. Janet Woodcock as the Acting Commissioner of the FDA.

MGFA submitted a letter, lending support to Dr. Janet Woodcock as acting FDA commissioner. She had been the FDA’s head of Drug Evaluation and Review. Good luck and congratulations Dr. Woodcock.

READ THE LETTER

A World Without MG