Bill heads to Senate for final vote
WASHINGTON, D.C. — On December 14, 2023, the House of Representatives passed the National Plan to End Parkinson’s Act (H.R.2365/S.1064). This bill is no-cost legislation that will create an advisory council comprising members of federal agencies, people living with Parkinson’s, care partners, researchers, clinicians, and other non-federal experts. With the validation of a Parkinson’s biomarker earlier this year, there is no better time for the federal government to join the private sector in supporting research for a cure.
“The passage of the National Plan will have a monumental impact on the over 16,000 Alabama residents who live with Parkinson’s disease every day, not to mention family members, caregivers, researchers, and members of the medical community who face the reality of Parkinson’s head on day after day,” said Bibby S. Bailey, Executive Director and CEO of Parkinson Association of Alabama, Inc. “On behalf of our community, I extend my heartfelt gratitude to the House of Representatives including our Alabama State Representatives in favor of this bill, for their unwavering support as we work together to ensure better treatments, earlier diagnoses, and ultimately, a cure for Parkinson’s.”
The National Plan to End Parkinson’s Act will create an advisory council comprising members of federal agencies that support research, care, and services for Parkinson’s, plus patients, care partners, researchers, clinicians, and other non-federal experts. The advisory council will host meetings throughout the year and provide a report to Congress and the U.S. Secretary of Health and Human Services that contains evaluations of all federally funded programs related to Parkinson’s. The report will also include recommendations on priority actions to prevent and cure Parkinson’s, improve health outcomes, reduce the financial impact of the disease on patients and the federal government, and limit exposures to environmental risk factors. The goal of the council is to ensure efficient and effective coordination among all federal entities with responsibility for managing, treating, and curing Parkinson’s disease.
More than 1 million Americans currently live with Parkinson’s disease in the U.S., including 110,000 veterans. It is the second most common and fastest-growing neurological disease, with 90,000 Americans receiving new diagnoses each year. Right now, Parkinson's costs the U.S. about $52 billion annually, and there is no treatment to slow, stop or reverse disease progression.