AMSTERDAM, NY—Representatives Paul Tonko (D-NY) and Gus Bilirakis (R-FL) introduced the National Plan to End Parkinson's Act, legislation that takes pioneering action 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.
“Receiving a Parkinson’s diagnosis is truly devastating for individuals and their loved ones,” Congressman Tonko said. “It is incumbent on Congress to ensure Americans know they will be supported during this frightening and life-altering time. Our legislation does just that. I’m proud to join my colleague, Representative Bilirakis, to introduce this commonsense, compassionate bill that will establish a robust response to address Parkinson’s and ensure that patients and their families receive the care they need.”
“This issue is very important to me as I’ve watched a close family member struggle with Parkinson’s,” said Congressman Bilirakis. “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 in order to get better results, which is exactly what our bipartisan legislation will do. It builds upon past success and strives to replicate other national project models that have helped advance our 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.”
“Throughout my time in Congress, I have advocated for the Parkinson’s disease community,” said Congresswoman Carolyn Maloney, Co-Chair of the Congressional Caucus on Parkinson's Disease and co-sponsor of the National Plan to End Parkinson's Act. “Establishing a National Plan to end Parkinson's provides an opportunity to improve the lives of those who suffer or may be diagnosed in the future. The federal government has a crucial role to play in supporting innovative research, and I urge continued funding to find treatments and a cure.”
“Today, the Parkinson’s research pipeline is brimming with possibility and hope. Yet, we’re sober about the work that lies ahead as more people and families are impacted by this disease in the United States, including in the state of Florida,” said Deborah W. Brooks, CEO and Co-Founder of The Michael J. Fox Foundation for Parkinson’s Research (MJFF). “The Parkinson’s community is grateful to the leadership of Representative Bilirakis on his support of the National Plan to End Parkinson’s Act — an important bill that will allow collaboration between the public and private sectors to prioritize research advancements toward better treatments and access to quality care that every person touched by this disease urgently needs.”
As the second most common and fastest-growing neurological disease globally, at least 60,000 new cases of Parkinson’s are diagnosed every year. In addition to the human toll that this degenerative disease takes on patients and their loved ones, U.S. taxpayers spend over $52 billion annually to provide treatment to those suffering with the disease. By 2037, the cost is estimated to jump to more than $80 billion annually.
The National Plan to End Parkinson's Act will create an advisory council comprising members of every federal agency that supports research, care and services for Parkinson’s, plus caregivers, patients and other non-federal experts. The council will:
- Ensure coordination among all 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 annually to Congress on progress toward the plan’s goals.