UPDATE: The National Plan to End Parkinson’s

In 2022, the U.S. House of Representatives introduced the National Plan to End Parkinson’s Act – the first-ever legislation in Congress focusing on curing and preventing Parkinson’s disease (PD) and ensuring quality care for those living with the disease. Unfortunately, the bill did not pass at that time, but the National Plan to End Parkinson’s Act (H.R.2365/S.1064) was reintroduced in 2023 and advanced out of the House Energy & Commerce Health Subcommittee on a unanimous vote!

Our partners at the Unified Parkinson’s Advocacy Council (or UPAC, of which APDA is a member) have confirmed that the legislation now has over 130 co-sponsors in the House and 19 co-sponsors in the Senate. UPAC has shared an organizational letter of support with congressional offices, along with a letter from 99 former members of Congress in support of the legislation. The hope is that the subcommittee’s action and letters of support will convince even more members of Congress to co-sponsor and support the legislation. October 25, 2023 has been designated the virtual National Day of Action, during which thousands of PD community activists will ask elected officials in Congress and at the state level to support key Parkinson’s policies. One easy step to take now is to add your name to the National Plan petition. We will be sharing additional ways to get involved as October 25 approaches.

If passed, this legislation will create an advisory council composed of representatives from federal agencies already working on Parkinson’s, people with PD, caregivers, health care providers, and representatives from non-profit organizations with experience in Parkinson’s research and care. APDA will be a part of the advisory council that will meet quarterly to create a strategic plan to end PD and be responsible for reporting to Congress every two years on its progress and impact.

The National Parkinson’s disease plan will address ways to:

• Increase federal research funding to help prevent and cure PD
• Develop a more streamlined approval process for treatments for PD
• Create new and improved models for patient care, with a specific interest in decreasing health disparities in PD treatment
• Develop standards and measures to prevent PD
• Coordinate a national plan to track cases of PD
• Improve the early diagnosis of PD
• Increase public engagement and public awareness of the disease
• Decrease the use of toxins that may contribute to PD risk
• (and more)

If passed, what will happen next? Once the bill passes into law, the real work will begin for the Federal government, along with all interested parties, to flesh out the details of the plan. APDA will be an eager participant in this