Congress Introduces the National Plan to End Parkinson’s Act

On Thursday, July 28, the U.S. House of Representatives introduced a bill entitled the National
Plan to End Parkinson’s Act
and on Thursday September 15, a companion bill was introduced in the Senate. This was an exciting moment for the Parkinson’s disease (PD) community, as this Act acknowledged the need for our government to increase its efforts to conquer PD.

Unfortunately, the bill did not pass due to many conflicting priorities on Capitol Hill including must-pass legislation to fund the government, but the efforts this past year have positioned the Parkinson’s community to be successful in this coming year’s congressional session. It has been confirmed with the bill sponsors – Representative Paul Tonko (Democrat, New York) and Representative Gus Bilirakis (Republican,Florida) in the House and Senator Shelley Moore Capito (Republican, West Virginia and Senator Chris Murphy (Democrat, Connecticut) in the Senate – that the National Plan will be reintroduced this coming year.

What is the National Plan to End Parkinson’s Act?

This Act is designed to unite the federal government and all those impacted by Parkinson’s disease in a
mission to prevent and cure Parkinson’s. It aims to create a comprehensive National Parkinson’s disease plan, which will address ways to:

  • Create an increase in 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)

To achieve these goals, an Advisory council will be created which will include members of all
federal agencies involved in PD research and care, as well as non-federal members including
people with PD, family care partners, health care providers and PD researchers. The American
Parkinson Disease Association (APDA) will work together with the Michael J. Fox Foundation
and the Parkinson’s Foundation (among others) as representatives on the Advisory council. The council will meet quarterly to formulate and implement the National plan and will be held accountable for achieving the goals outlined.

What happens next?

The bill will be re-introduced in Congress this year and hopefully it will pass this time around.

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
process and will be turning to you, our constituents, for your ideas and contributions as the
National Plan is developed and implemented.

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