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.
Latest Advocacy Alerts and Actions
Making Treatments Affordable
Thanks in part to advocacy work from patients and organizations across the country, the Inflation Reduction Act of 2022 includes provisions to cap perscription drug costs for those on Medicare. From the National Organization of Rare Disorders:
Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following statement:
“The Inflation Reduction Act is a significant step forward in helping ensure that individuals and families with rare diseases have access to the comprehensive health care they need to survive and thrive.
The extension of enhanced Advanced Premium Tax Credits for three years will keep quality health insurance accessible to millions of Americans, and the creation of an annual out-of-pocket cap on prescription drug costs for Medicare beneficiaries will provide a vital protection to patients who struggle to afford their medications.
NORD is pleased to see that Congress did not include damaging changes to the Orphan Drug Tax Credit (ODTC) within the Inflation Reduction Act. We advocated tirelessly on behalf of the over 25 million Americans with a rare disease to preserve this critical incentive when significant changes to the ODTC were considered by Congress last fall. We are grateful the current 25% tax credit for clinical trial testing services remains unchanged and believe it is a critical tool to help foster robust rare disease drug development. We applaud the federal commitment shown to ensure access to safe and effective treatment for rare disease populations is maintained, and future research efforts for new therapies are incentivized by protecting the ODTC.
While this bill includes provisions important to individuals and families facing rare diseases, the work of our leaders on Capitol Hill is not done. NORD has elevated rare community voices for generations, and we will continue to work closely with lawmakers in Congress and the Biden Administration on the implementation of this legislation and on future efforts to improve the lives of people living with rare disorders.”
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 PRESS RELEASE
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.