Parkinson’s advocates urge implementation of new federal plan
APDA calls for advisory council and coordinated agency action
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- Advocates are urging HHS to implement the National Parkinson’s Project.
- The federal plan aims to improve prevention, diagnosis, treatment, and care for Parkinson’s disease.
- Implementation requires seating an advisory council and coordinated action across federal agencies.
The American Parkinson Disease Association (APDA) is urging U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. to move forward with implementation of the National Parkinson’s Project.
The project is an integrated national plan to prevent, diagnose, treat, and ultimately cure Parkinson’s disease. Advocacy organizations such as the Michael J. Fox Foundation (MJFF) and the Parkinson’s Foundation have supported the effort and urged federal action to move it forward.
APDA is calling for the formal seating of the project’s advisory council, along with clear timelines and stronger coordination among federal agencies.
APDA is also encouraging caregivers and people with Parkinson’s disease to contact their members of Congress through the Capitol switchboard at 202-224-3121 and ask them to urge HHS to take action.
National Parkinson’s Project created under bipartisan federal law
In July 2024, the National Plan to End Parkinson’s Act was signed into law with bipartisan support, formally establishing the National Parkinson’s Project. The initiative calls for a coordinated federal approach to preventing Parkinson’s disease, easing symptoms, and slowing or stopping disease progression.
However, APDA says the project cannot move forward as intended without the formal establishment of the advisory council, which is meant to include people with Parkinson’s, caregivers, healthcare providers, researchers, advocacy groups, and representatives from federal agencies.
APDA also notes that the project has fallen behind federally mandated timelines, including delivery of an initial report to Congress. The organization says these delays are limiting early progress envisioned under the law.
As a result, APDA is urging HHS to fully implement the project, meet required planning and reporting obligations, and demonstrate tangible progress for the Parkinson’s community.
When fully implemented, the initiative is intended to help guide federal research priorities and improve coordination of Parkinson’s research and services across agencies. Its goals include advancing prevention strategies, improving early diagnosis, and supporting the development of safe and effective treatments and new models of patient care.
The plan also highlights the impact of Parkinson’s disease on caregivers’ physical, mental, and social health, as well as health disparities in diagnosis, treatment access, and participation in clinical trials.
In addition to Parkinson’s disease, this plan encompasses other types of parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
