With support from the U.S. Department of Health and Human Services (HHS), Office of the Assistant Secretary for Health (OASH), the National Institutes of Health (NIH) is leading the implementation of the Dr. Emmanuel Bilirakis and the Honorable Jennifer Wexton National Plan to End the Parkinson’s Act (PL 118-66), which was signed into law on July 2, 2024. This follows a delegation of authority from the Secretary of the Department of Health and Human Services to the Director of the NIH.
The law establishes a Federal Advisory Council on Parkinson’s Research, Care and Services and calls for the establishment and regular updating of a national plan to prevent, diagnose, treat and cure Parkinson’s, relieve its symptoms and slow or prevent its progression fuses. In addition to Parkinson’s disease, the national plan will also focus on other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy and Parkinson’s-related dementia.
The goals of the law are to coordinate Parkinson’s-related research and services among federal agencies; accelerate the development of safe and effective treatments; improve early diagnosis; facilitate coordination of care and treatment; reduce the impact of Parkinson’s on the physical, mental and social health of people with Parkinson’s and their caregivers and families; and increase international coordination.
In anticipation of implementation of this law, the NIH is seeking nominations for individuals to serve on the Federal Advisory Council on Parkinson’s Research, Care, and Services, which will provide guidance on Parkinson’s-related issues, including recommendations for priority actions taken in the national plan should be included. . The council will consist of two patient advocates, including one person living with early-onset Parkinson’s disease; a family caregiver; a healthcare provider; two biomedical researchers with Parkinson’s-related expertise; a movement disorder specialist who treats people with Parkinson’s; a dementia specialist who treats people with Parkinson’s; and two representatives from Parkinson’s-related nonprofits. In addition, the council will have representatives from 13 federal agencies involved in Parkinson’s research, clinical care or healthcare services. The council will be co-chaired by the director of the NIH’s National Institute of Neurological Disorders and Stroke and the deputy director of HHS’s Office of Science and Medicine for OASH.