January 17, 2025 - NIH Press Release
NIH to lead effort to cure Parkinson's disease, per recent law.
See the July 2024 text (signed by President)
https://www.congress.gov/bill/118th-congress/house-bill/2365/text
What this law actually DOES (per Chat GPT) (besides naming things or setting up committees)
The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act (H.R. 2365, now Public Law 118-66) establishes a National Parkinson's Project under the Department of Health and Human Services (HHS). The law is modeled after the National Alzheimer’s Project Act and primarily aims to coordinate federal efforts related to Parkinson’s disease, improve research and care strategies, and facilitate collaboration across government agencies.
Key Provisions and What the Law Actually Does:
Creates a National Parkinson’s Project (NPP)
- A formalized, government-led initiative focused on prevention, diagnosis, treatment, and potential cures for Parkinson’s and related neurodegenerative disorders.
- Covers not just Parkinson’s disease but also other Parkinsonisms like Multiple System Atrophy, Progressive Supranuclear Palsy, and Parkinson’s-related dementia.
Requires a National Plan for Parkinson’s
- HHS must develop, maintain, and periodically update a comprehensive national plan to:
- Improve diagnosis, treatment, and symptom management.
- Slow or stop disease progression.
- Enhance coordination of care.
- The plan must also assess the current level of federal investment in Parkinson’s and estimate future needs.
- HHS must develop, maintain, and periodically update a comprehensive national plan to:
Mandates Annual Assessments
- The Secretary of HHS must evaluate progress each year and recommend priorities for policy and funding.
- Includes analyzing the financial burden of Parkinson’s on patients and families.
Creates an Advisory Council on Parkinson’s Research, Care, and Services
- Composed of federal officials (from NIH, FDA, CDC, VA, EPA, etc.) and 10 non-governmental experts, including:
- Patient advocates (including at least one person with young-onset Parkinson’s).
- Caregivers.
- Researchers, movement disorder specialists, and dementia specialists.
- The Council will meet quarterly for the first two years and at least annually thereafter.
- Responsible for producing annual reports to Congress on federally funded Parkinson’s programs.
- Composed of federal officials (from NIH, FDA, CDC, VA, EPA, etc.) and 10 non-governmental experts, including:
Enhances Federal Coordination & Research
- Requires all federal agencies with Parkinson’s-related programs to coordinate efforts to prevent duplication.
- Encourages cross-agency collaboration on Parkinson’s research, especially investigating environmental risk factors (e.g., pesticides, toxins).
International Collaboration
- Encourages coordination with global organizations to improve Parkinson’s research and care strategies worldwide.
Sunset Clause
- The National Parkinson’s Project and the Advisory Council expire at the end of 2035, unless extended by new legislation.
What This Law Does Not Do:
- It does not provide direct funding for new Parkinson’s treatments or research (though it may influence funding decisions).
- It does not create new Medicare/Medicaid benefits for Parkinson’s patients.
- It does not impose any mandates on private research organizations or healthcare providers.
Bottom Line:
This law is largely an administrative and coordination effort, meant to improve how the federal government organizes Parkinson’s research, care, and policy. It does not directly fund research or treatment breakthroughs but could influence federal priorities, potentially leading to better resource allocation and improved access to care for patients.
