The Latest News on the National Plan to End Parkinson’s Bill

CAPITO, MURPHY, BILIRAKIS, TONKO REINTRODUCE BILL TO ADDRESS PARKINSON’S DISEASE

Bipartisan National Plan to End Parkinson's Act is the first-ever legislation solely devoted to ending Parkinson’s disease.

WASHINGTON, D.C. – U.S. Senators Shelley Moore Capito (R-W.Va.) and Chris Murphy (D-Conn.) along with U.S. Representatives Gus Bilirakis (R-Fla.) and Paul Tonko (D-N.Y.) reintroduced the National Plan to End Parkinson’s Act, which aims to unite the federal government in a mission to cure and prevent Parkinson’s, alleviate financial and health burdens on American families, and reduce government spending over time. Parkinson’s disease is the second most common – and fastest-growing – neurological disease globally with nearly 90,000 new cases diagnosed every year.

“Far too many West Virginians are impacted by Parkinson’s disease,” Senator Capito said. “Whether they are living with the disease or caring for someone impacted by it, Parkinson’s takes a terrible toll on the physical, mental, emotional, and economic well-being of everyone involved. The National Plan to End Parkinson’s Act is commonsense legislation which will establish a robust response to address the disease and move us towards new treatments and a cure.”

“Anyone living with Parkinson’s or caring for a loved one impacted by the disease understands the devastating toll it takes. We need a national plan to end Parkinson’s, and that requires serious collaboration across the public and private sector. This legislation would make sure the federal government is doing everything it can to find a cure and support patients and their families,” Senator Murphy said.

“This issue is very important to me as I've watched a close family member struggle with Parkinson's,” Representative Bilirakis said. “This disease takes a terrible toll on the physical, mental, emotional, and economic well-being of everyone involved. The lack of treatment options leave patients, families and the American taxpayers in a terrible quandary. We must change our approach to get better results, which is exactly what our legislation will do. It builds upon past success and strives to replicate other national project models that have helped advance health care goals. This critical legislation will provide hope to those who are suffering and hopefully lead to better patient outcomes with less expensive disease management.”

“Too many families know firsthand the pain and fear that comes with a Parkinson’s diagnosis. I was honored to introduce the National Plan to End Parkinson’s Act last Congress alongside Representative Bilirakis and our Senate partners. Our legislation will foster a much-needed, coordinated, pioneering national response—from federal agency’s to local stakeholders—to prevent and end the disease of Parkinson’s. I know that, with our continued bipartisan collaboration and the strong advocacy of dedicated stakeholders, we will make this compassionate bill the law of the land,” Representative Tonko said.

“Today, the Parkinson's research pipeline is bursting with possibility and hope. We're learning more about Parkinson's than ever before, and we know we'll need the collaboration across sectors, including on Capitol Hill, to usher in a new generation of treatments and cures,” Deborah W. Brooks, CEO and Co-Founder of The Michael J. Fox Foundation for Parkinson's Research (MJFF), said. “Our Parkinson's community of grassroots advocates and community partners across the United States who have rallied together toward a shared goal are grateful for the leadership of Senators Capito and Murphy and Representatives Bilirakis and Tonko in re-introducing The National Plan to End Parkinson's Act. This historic bill would foster collaboration between the public and private sectors toward better treatments and access to quality care that every person and family touched by this disease urgently needs.”

“Senator Capito is an incredible leader and champion of better cures and treatments for neurological diseases,” George Manahan, a Charleston business owner and person living with Parkinson’s disease, said. “Her leadership on the National Plan to End Parkinson’s Act gives people suffering from Parkinson’s disease new hope for a cure. When I was diagnosed, I began working with state and federal lawmakers to prioritize the need for a cure and public-private collaboration to make it happen. Senator Capito is a hero to those of us living with Parkinson’s, and I am thankful for her work to create this important bill.”

“Parkinson’s disease is impacting patients and their families in America more than ever before. It causes progressive disability in movement, cognition, and other functions with no cure on the horizon. We need to coordinate and accelerate our research and disease management efforts so that we can better understand and improve our treatments in hopes that one day soon we will see an end to this disease,” Dr. Ali Rezai, Executive Chair of WVU Rockefeller Neuroscience Institute (RNI), said.

The National Plan to End Parkinson’s Act will create an advisory council comprising members of federal agencies that supports research, care, and services for Parkinson’s, plus caregivers, patients, and other non-federal experts.

Specifically, the council will: 

• Ensure coordination among federal entities with responsibility for managing, treating, and curing Parkinson’s disease;

• Evaluate all current federal programs related to Parkinson's;

• Write a national plan to prevent and cure Parkinson’s, and reduce the financial impact of the disease on patients and the federal government; and

• Report to Congress on progress toward the plan’s goals.

For bill text, click here.

For a one-pager on the legislation, click here. 

March 30, 2023