Making Our Combined Voices Heard
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 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.
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 the MGFA – firstname.lastname@example.org.
Latest Advocacy Alerts and Actions
ACTION ALERT: Make Treatments More Affordable
Write to the U.S. Congress about Medicare Insurance – Make Treatments Affordable
Over the next few weeks, Congress is considering legislation to make medications affordable for millions of people. Congress is considering passing four key provisions that would make prescriptions and vaccines more affordable through the Inflation Reduction Act.
If passed, the provisions would offer huge financial relief to millions of Medicare beneficiaries who currently have no annual limit on what they pay for prescription medications.
MGFA patient partner The PAN Foundation has been advocating for passing these reforms, and we are asking you to advocate with us.
Contact your members of Congress using this link below.
Tell your representatives to act now.
Provision #1: an annual limit, or cap, on prescription costs
For people living with serious illnesses, out-of-pocket costs for prescription medications can be very high—for many, it can be thousands or even tens of thousands of dollars each year. And for those on Medicare, there is no limit on how much they will spend out of pocket for treatment. This can lead to older adults draining retirement funds, taking out a second mortgage, or taking on credit card debt, and that’s just not acceptable.
The proposed change: If passed, people with Medicare Part D will spend no more than $2,000 per year out of- pocket for their prescription medications. This “cap” will take effect in 2025.
Provision #2: monthly payments that can “smooth” yearly costs
People on Medicare often face very high out-of-pocket costs for prescription medications at the beginning of the year when their deductibles reset. With no limits in the current system, people with Medicare face the challenge of trying to budget for unlimited medication costs.
The proposed change: If passed, Medicare Part D plans would offer enrollees the opportunity to pay out-of-pocket costs for prescription medications in monthly installments, including a monthly limit. This would help “smooth out” costs throughout the year, making them more manageable and affordable. This would take effect in 2025.
NORD Applauds House Passage of HR 7667, the Food and Drug Amendments of 2022
The US House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (HR 7667), legislation with significant implications for millions of Americans living with rare diseases. The bipartisan bill is an important step forward in reauthorizing the FDA’s medical product user fee programs, helps strengthen the accelerated approval pathway, and protects the intent of the Orphan Drug Act.
"On behalf of millions of Americans living with rare diseases, we commend House lawmakers for working in a bipartisan way to pass the critically important Food and Drug Amendments of 2022," said Heidi Ross, Vice President, Policy & Regulatory Affairs, NORD. "It is clear from this vote that our elected officials have heard our community’s calls for action, and they recognize the importance of these user fee acts in helping to address the urgent needs of their constituents who are affected by rare diseases."
READ THE FULL PRESS RELEASE ONLINE
Colorado Becomes 24th State to Establish a Rare Disease Advisory Council (RDAC)
Governor Jared Polis of Colorado, signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council, making Colorado the 10th state to establish an RDAC since the start of 2021.
"Thank you to the bill sponsors, stakeholders, and everyone in the rare disease community for helping to establish a Rare Disease Advisory Council here in Colorado. This RDAC will have a positive impact in making meaningful improvements to the everyday lives of families like mine. I’m excited about the future and optimistic we can fight rare disease together with this council," said Nick Kirchhof, NORD Colorado Rare Action Network Volunteer State Ambassador.
READ THE NEWS ABOUT THIS NEW RARE DISEASE ADVISORY COUNCIL
ACTION ALERT - For Arkansas Residents
Submit Public Comments to Blue Cross/Blue Shield for argenx Vyvgart Policy
Open to MG Patients who live in Arkansas
The MG community has an opportunity to submit public comments to two Blue Cross/Blue Shield affiliate, Arkansas, to voice opinions and support of insurance coverage policy for the new treatment Vyvgart. The voice of the MG patient community in Arkansas is best positioned to share the need for more treatment options, and many patients encounter difficult hurdles that may prevent them from advocating for themselves.
We are making you aware of this opportunity to submit comments on insurer policies in Arkansas. Recent innovations have made more targeted treatments available, and it is important to give patients access to these therapies. Add your own statement regarding the burden of an MG diagnosis to you and your family and also include your personal thoughts on the importance of being able to access newer targeted treatments that may reduce your ability to accomplish daily activities, work, etc.
VIEW THE POLICY Documents below and you can submit your comments to the following links or medical professionals depending on where you live.
FOR ARKANSAS RESIDENTS
Add in the Subject Line: Arkansas BCBS Vyvgart Policy
VIEW ARKANSAS POLICY 1
VIEW ARKANSAS POLICY 2
Send emails directly to Blue Cross/Blue Shield Medical Professionals
Brooklyn Pruett, Pharm D.
The CMO of Arkansas Blue Cross is:
Dr. Mark Jansen
501-378-2324 – P
501-378-2855 – F
Corporate Medical Director Internal Affairs:
Dr. Bert Price, III
Corporate Medical Director External Affairs:
Dr. Vic Snyder
The draft Vyvgart Policy is not in line with the approved FDA label for initiating treatment, requiring a minimum MG ADL of 5 and also requires a specific MG ADL improvement for re-dosing. This requirement does not account for the unique experience of each MG Patient and the speed at which they may have worsening of their symptoms
The draft Vyvgart policy also requires a one year of treatment with 2 or more immunosuppressants with an inadequate response. This is also a burden that may take away patients ability to perform daily activities, care for families or work. These treatments have serious side effects and can often times be contraindicated in patients.
Arkansas requires 12 months of IVIG or PLEX with an inadequate response which burdens patients with additional side effects and potential for adverse events.
Tennessee : policy is OR “inadequate response to IVIG or PLEX” which risks patients symptoms control and exposure to side effects.
Thank you for your time and advocacy.
Archived Action Alerts - NO LONGER ACTIVE
ACTION ALERT - Tell Congress to pass the Telehealth Extension and Evaluation Act!
Telehealth services have dramatically improved access to health care for many patients with rare disorders during the COVID-19 pandemic – including those diagnosed with myasthenia gravis. But telehealth flexibility for patients is set to expire soon, and this could reverse the important progress being made to help patients with rare disease.
The Telehealth Extension and Evaluation Act (S. 3593) will help enable robust telehealth access for an additional TWO years, while also collecting vital data about telehealth services so that permanent improvements can be made.
But we need your help. We have partnered with NORD to inform the rare disease community about this critical policy. We ask you to reach out to your members of Congress NOW to tell them why telehealth is important to patients with rare disease.
ACTION ALERT - 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 - MG Awareness Month Proclamations
Start Working on MG Awareness Month Government Proclamations Now!
As you know, it takes time to ask your local and state government for official MG Proclamations for MG Awareness Month. You should start now to write a letter or call government officials in your state or hometown to issue an MG Awareness Month proclamation. Use a helpful sample letter by clicking on the following link. The more we can do in March, April, and May, the better results we'll have in June.
PLEASE MARK YOUR CALENDAR
Virtual Rare Disease Week on Capitol Hill 2022
February 22nd to March 2nd (Registration opens December 6th, 2021)
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
No prior experience is necessary. Registration for this event and all RDLA events are free for all rare disease advocates.
Pre-Rare Disease Week Training Webinars and Office Hours
2/1/22 – Rare Disease Week Training Webinar
2/8/22 – Team Coordinator Webinar
2/10/22 – Share Your Story with Policymakers Webinar
2/11/22 – Office Hour: New Attendees
2/14/22 – Office Hour for All Attendees
2/15/22 – Office Hour: Team Coordinators
Virtual Rare Disease Week Schedule
Tuesday, 2/22/22 – Caucus Briefing and Documentary Screening
Wednesday, 2/23/22 – Legislative Conference Day 1 and YARR meet up
Thursday, 2/24/22 – Legislative Conference Day 2
Friday, 2/25/22 – Office Hour
Monday, 2/28/22 – Rare Disease Day at NIH
Tuesday, 3/1/22 – Meetings with House of Representatives
Wednesday, 3/2/22 – Meetings with Senators
For more information or for any questions, please contact Katelyn Laws, Rare Disease Legislative Advocates Program Coordinator at email@example.com or VISIT the Rare Disease Week website.
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.
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.
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