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Updates from Washington

Breaking News from D.C.: Congress Has Passed the National Plan to End Parkinson's Act

Congress Delays Decision on 2018 Budget

Update as of May 23, 2024:

The U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December. 

Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate.

On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.  

The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.  

We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.   

A cross-country strategy to end Parkinson’s has the potential to: 

  • Dramatically increase federal research funding; 

  • Develop more effective pathways for treatments and cures; 

  • Improve early diagnosis; 

  • Spark new and improved models for patient care; 

  • Create standards and measures to prevent Parkinson’s disease; 

  • Address health disparities in diagnosis, treatment and clinical trial participation and 

  • Enhance public awareness of the disease. 

As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease. 

Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.


Update as of December 14, 2023:

The House of Representatives just passed The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act!

On behalf of the 1 million people living with Parkinson’s disease in the U.S. today, The Michael J. Fox Foundation for Parkinson’s Research applauds the House for taking this incredible, historic step forward in the effort to provide better care to every patient and family impacted by this disease.  

This victory belongs to each one of you — our Parkinson’s community. Tens of thousands of you rallied together to help your policymakers understand just how critical this legislation is to patients, families, caregivers, researchers, clinicians and others. You signed our petition, published op-eds, shared your stories on social media, called, wrote and met with your representatives and so much more.  

We’re especially grateful to the bills’ lead sponsors in the House, Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional leadership in getting this bill passed. We also extend our deepest thanks to Majority Leader Steve Scalise, Minority Leader Hakeem Jeffries, Representative Jennifer Wexton, Representative Frank Pallone, Representative Cathy McMorris Rodgers and others for their support.  

With groundbreaking progress made in Parkinson’s research this year — including the discovery of a biomarker — there is no better time to focus our efforts on accelerating science to better treat, prevent and ultimately, cure this disease. We look forward to continuing to champion this bill as it moves on to the Senate. 

Take a moment to thank your representatives for passing the National Plan in the House and urge your senators to support the bill when it gets to the Senate!


Update as of December 6, 2023:

Thanks in large part to you — our Parkinson’s community — The National Plan to End Parkinson’s Act has just been advanced out of the House Energy and Commerce Committee! Next, the bill will go to the full House of Representatives for a vote, and if successful, on to the Senate.

Described as a "dose of hope" by Congressman Paul Tonko, the National Plan received unanimous support from the Committee during an inspiring and emotional bill hearing. Watch the short video below to hear the moving remarks in support of the bill. 

We couldn't be more grateful to the 850 advocates who joined MJFF's Public Policy team for more than 350 meetings with members of Congress this year! In addition, tens of thousands of advocates published op-eds, signed our petition, wrote letters and called members of Congress to get the bill this far. We offer special thanks to the bill’s lead sponsors in the House, Congressmen Gus Bilirakis (R-FL) and Paul Tonko (D-NY), for their leadership and support as well.

This is an incredible step forward, but the work continues to get the bill passed! Urge your representatives to vote ‘yes’ on the National Plan when it gets to the House floor for a vote. 


Update as of November 13, 2023:

Congressional support for The National Plan to End Parkinson’s Act continues to grow.  The bill has now garnered 23 cosponsors in the U.S. Senate and 146 cosponsors in the House — remarkable bipartisan support for this very important legislation! 


Update as of June 14, 2023

George Manhan at the hearing table for National Plan

Editor’s Note: This blog update is written by George Manahan, small business owner and policy advocate in West Virginia. 

This afternoon, I had the honor of testifying before the U.S. House Energy and Commerce Committee Subcommittee on Health about the National Plan to End Parkinson’s Act. In my testimony, I spoke about what it’s like living with Parkinson’s disease and the impact it has on my family and my work. It was important for me to share what the National Plan bill really means for those of us living with Parkinson’s. It means hope. It means progress. It means that all federal agencies who have anything to do with Parkinson’s are going to be able to come together for the first time in a strategic way to ensure there is a laser focus on preventing and curing Parkinson’s. 

The National Plan to End Parkinson’s Act is modeled after the successful National Alzheimer’s Plan which laid the groundwork for a quadrupling of federal research investment in Alzheimer’s. I’m energized by the promise of what can come from the National Plan to End Parkinson’s Act. And I’m heartened and encouraged by my time with various members of Congress at the hearing this afternoon. Not only did we have good dialogue during the Q&A part of the hearing, I also learned that quite a few members of the subcommittee have family members and friends living with Parkinson’s disease. 

Advocacy is important to me because I want to use my voice in ways that uplift our whole community, and in ways that can prevent and cure this disease. I also want to make sure federal and state governments are doing everything they can to make sure that people living with Parkinson’s can get the care and support we need. 

You can watch the hearing here. I give my personal testimony at the 45:36 mark. And, I answer questions from members of Congress throughout the Q&A session that follows. 

You can read my oral testimony here

You can read written testimony submitted by The Michael J. Fox Foundation here


Update as of May 8, 2023

Advocates and members of the Parkinson’s continue to email, call, and meet with their members of Congress to ask them to support the National Plan to End Parkinson’s Act (S.1064/H.R.2365). And it’s working! The bill now has 11 cosponsors in the Senate and 48 cosponsors in the House. 

Here’s what the community is saying about advocating for congressional support of the National Plan: 

“I just got the news that Rep. Matsui has agreed to cosponsor the National Plan to End Parkinson's Act! I would like to thank you all for your efforts in making this happen.  For me and an ever-increasing number of Californians afflicted by this disease, this legislation offers hope in a fight where losing hope is devastatingly easy.  I am personally grateful for all of you, and the many others who have been working to push this forward.  Because of you, hope is in my corner. Thank you, thank you, thank you.” — Jerry Pepper 

 You can reach out to your members of Congress to ask them to support this bill. It’s easy and it only takes about 60 seconds to do:  Ask Congress to Help Prevent and Cure Parkinson’s Disease 

Here is recent press coverage of the legislation


April 19, 2023:

On Wednesday, March 29, 2023, the U.S. House of Representatives and U.S. Senate reintroduced the first-ever legislation solely devoted to ending Parkinson’s disease. As you may recall, the bill was first introduced in the previous Congress, but did not come up for a vote by the time Congress adjourned at the end of its session in December 2022. 

The National Plan to End Parkinson’s Act (H.R.2365 / S.1064) will unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s. It also will alleviate financial and health burdens on American families and ensure those living with the disease have access to the care they need. About one million people are living with Parkinson’s in the United States and there are nearly 90,000 new cases diagnosed every year. 

This bipartisan legislation is led by Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY). The bill was introduced with the support of six additional senators and 12 additional representatives who signed on as cosponsors. The Michael J. Fox Foundation and Parkinson’s community are thankful for their leadership in re-introducing the bill in the new Congress. We also are grateful for the advocacy from many volunteers in the Parkinson’s community who met with their members of Congress to ask them to cosponsor the bill for its introduction. 

It’s Time to Advocate 
This bill will go through the traditional congressional process and will need to be voted on by the House and Senate. Your members of Congress need to hear from you! Please contact them and ask them to co-sponsor this historic legislation. We have a pre-written email you can use. It’s easy and takes about 90 seconds to do!    
 
How does the National Plan actually work? 
Parkinson’s is a disease that requires a national effort to cure and prevent. Parkinson’s costs the U.S. $52 billion every year, half of which is shouldered by the federal government. That annual cost is expected to grow to $80 billion by the year 2037. A National Plan to End Parkinson’s has the potential to: 

  • Dramatically increase federal research funding; 

  • Develop more effective pathways for treatments and cures; 

  • Improve early diagnosis; 

  • Spark new and improved models for patient care; 

  • Create standards and measures to prevent Parkinson’s disease;  

  • Address health disparities in diagnosis, treatment and clinical trial participation; and  

  • Enhance public awareness of the disease. 

The public-private advisory council created as part of this legislation will report to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves. 

We will update this blog as the legislation advances through Congress, so stay tuned! Please follow us on our social media channels to get the latest and greatest news about the National Plan as Congress begins its work. If you have a relationship with your members of Congress, please email us at policy@michaeljfox.org so we can work with you to ask your elected officials to cosponsor this legislation. 

What Congress is saying about the National Plan to End Parkinson’s Act

Press Release from Senators Capito and Murphy 

Press Release from Representatives Bilirakis and Tonko 

What the community is saying about the National Plan to End Parkinson’s Act

Parkinson’s News Today: National Plan to End Parkinson’s Act Reintroduced 

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