Six Priorities for the National Plan to End Parkinson’s: What We Heard From the Parkinson’s Community
🧠 What will you learn in this article?
- What nearly 900 Parkinson’s advocates told us should be prioritized in the National Plan to End Parkinson’s.
- The six priorities guiding Parkinson’s Foundation recommendations to federal leaders.
- How the Parkinson’s Foundation is bringing those priorities directly to the federal Advisory Council.
- How you can stay involved as the National Plan is developed.
When federal leaders developing the National Plan to End Parkinson’s met for the second time on August 24, the Parkinson’s Foundation brought a clear message from our community: accelerate the breakthroughs that can change Parkinson’s tomorrow while making sure people can access the care they need today.
Ahead of the meeting, we asked advocates what they want federal leaders to prioritize. Nearly 900 people responded, and their input helped inform both the Foundation’s recommendations to the federal government and remarks delivered by Parkinson’s Foundation President and CEO John Lehr to the Advisory Council.
What We Heard from the Parkinson’s Community
Research that can fundamentally change the course of Parkinson’s was the clearest priority. Of the 873 survey responses, 94% identified developing treatments that can slow, stop, cure or prevent Parkinson’s as a top research priority.
Access to care was another major concern: 36% of respondents reported difficulty finding a healthcare provider with Parkinson’s expertise or getting an appointment within a reasonable amount of time. Among respondents in rural communities, that number climbed to 46%. Another 17% reported trouble getting insurance or Medicare to cover recommended Parkinson’s care.
Six Priorities for the National Plan
The survey findings reinforce the six high-impact goals that guided the Parkinson’s Foundation recommendations to the federal government through its Request for Information on the National Plan.
In partnership with the American Parkinson Disease Association and The Michael J. Fox Foundation, we outlined six priorities for what the National Plan should achieve by 2035:
- Reduce the financial impact of Parkinson’s on families living with the disease.
- Improve health outcomes and quality of life for people with Parkinson’s.
- Prevent Parkinson’s, improve symptoms and slow or stop disease progression.
- Improve the quality of care for people with Parkinson’s covered through federally funded healthcare programs, including Medicare and Medicaid.
- Research the association between environmental triggers and Parkinson’s and reduce exposure to potential risks.
- Research and better understand the underlying factors contributing to Parkinson’s.
Together, these priorities reflect both the long-term goal of preventing and curing Parkinson’s and the immediate need to improve care, affordability and quality of life for people living with the disease today.
Bringing Priorities to Federal Leaders
John Lehr brought these priorities directly to the Advisory Council during its August 24 meeting.
“The National Plan should provide the leadership and accountability necessary to turn these priorities into measurable progress for people with Parkinson’s and their families,” John said.
The Parkinson’s Foundation is also urging the Advisory Council to keep implementation of the National Parkinson’s Project on track, including delivering its first annual report within a year.
The work is far from over. Two more public Advisory Council meetings are planned for November 9 and December 7, giving people affected by Parkinson’s additional opportunities to weigh in as the National Plan takes shape.
After years of advocacy to create this historic federal initiative, the Parkinson’s community now has an opportunity to help determine what it delivers.
Stay involved. Join our Advocacy Network to receive updates about opportunities to make your voice heard and help us push for a National Plan that meets the needs of people with Parkinson’s and their families.
