In a significant move to combat Parkinson’s disease and related neurodegenerative disorders, the U.S. government has launched a national initiative, backed by the U.S. Department of Health and Human Services (HHS) and led by the National Institutes of Health (NIH). This initiative follows the signing of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act (P.L. 118-66) into law on July 2, 2024. The law represents a comprehensive effort to address the multifaceted challenges posed by Parkinson’s disease and other Parkinsonism-related disorders.
The legislation establishes the Federal Advisory Council on Parkinson’s Research, Care, and Services and mandates the creation of an ongoing national plan focused on preventing, diagnosing, treating, and ultimately curing Parkinson’s disease. This plan will also aim to alleviate symptoms and slow or stop the progression of the disease. The act extends its scope beyond Parkinson’s disease to encompass other neurodegenerative conditions associated with Parkinsonism, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
Key Objectives of the National Plan
The overarching goals of the new law are to:
Coordinate Research and Services: Streamline Parkinson’s-related research and services across various federal agencies.
Accelerate Treatment Development: Expedite the creation and approval of safe and effective treatments for Parkinson’s and related disorders.
Enhance Early Diagnosis: Improve the ability to diagnose Parkinson’s and Parkinsonism early, paving the way for better outcomes.
Facilitate Coordinated Care: Ensure that individuals affected by Parkinson’s disease receive seamless care and treatment.
Reduce Impact on Patients and Families: Address the physical, mental, and social challenges faced by individuals living with Parkinson’s and their caregivers.
Increase International Collaboration: Foster global coordination to enhance research and care related to Parkinson’s disease.
The Role of the Federal Advisory Council
As part of the implementation of the act, NIH is seeking nominations for individuals to serve on the Federal Advisory Council on Parkinson’s Research, Care, and Services. This council will provide expert guidance on Parkinson’s-related issues and make recommendations for priority actions to be included in the national plan.
The council will consist of:
Two patient advocates, one of whom will have young-onset Parkinson’s disease.
A family caregiver.
A healthcare provider.
Two biomedical researchers with expertise in Parkinson’s-related disorders.
A movement disorders specialist and a dementia specialist, both of whom treat people with Parkinson’s.
Two representatives from nonprofit organizations focused on Parkinson’s disease.
Representatives from 13 federal agencies involved in Parkinson’s research, clinical care, or services.
The council will be co-chaired by the director of the NIH’s National Institute of Neurological Disorders and Stroke and the associate deputy director for the Office of Science and Medicine at HHS’ OASH.
Future Directions
The establishment of this comprehensive national plan is a landmark step in the fight against Parkinson’s disease and related conditions. By aligning federal agencies, researchers, healthcare providers, patient advocates, and nonprofits, this initiative is poised to accelerate advancements in treatment and care, ultimately improving the quality of life for those affected by Parkinson’s disease.
Additionally, the inclusion of a diverse range of stakeholders, including individuals with Parkinson’s, caregivers, and healthcare professionals, will ensure that the plan is tailored to the needs of those living with these challenging diseases.
You Might Be Interested In:
-
Study Identifies Unique Brain Network Linked to Schizophrenia-Related Brain Atrophy
-
Hormonal Shifts in Menopause Redefine Women’s Microbiome and Risks
-
Preconception Air Pollution Exposure Linked to Increased Child BMI, Study Finds
