What this means for the future of Parkinson’s disease 

 On May 23, 2024, Congress officially passed the National Plan to End Parkinson’s Act (H.R.2365/S.1064). The passing of this act marks a historic step in the right direction towards finding a cure for Parkinson’s disease. 

 

The bill received an outstanding amount of bipartisan support in the U.S. House of Representatives when it was initially presented in December of 2023. On May 23, The U.S. Senate officially passed the bill, which sent it to President Biden to be signed into law. 

 

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

H.R.2365– 118th Congress, also known as the Dr. Emmanuel Biliarkis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, was initially introduced by U.S. Senators Chris Murphy (D-Conn.) and Shelley Moore Capito (R-W.Va.) and U.S. Representatives Gus Bilirakis (R-Fla.) and Paul Tonko (D-N.Y.) on behalf of the House - Energy and Commerce and Senate - Health, Education, Labor, and Pensions Committees on March 29, 2023. The bill passed the House on December 14, 2023. This bill requires the Department of Health and Human Services (HHS) to address Parkinson’s disease and related conditions through the creation of an advisory council of federal agencies.

 

The advisory council will support the research, care, and services for Parkinson’s in the following ways:

• Facilitate coordination among federal parties with the mission of managing, treating, and curing Parkinson’s disease
• Assess all existing Parkinson’s disease federal programs
• Create a national plan for the prevention and cure of Parkinson’s
• Devise strategies to reduce the financial burden of Parkinson’s on patients, caregivers, and the federal government
• Report back to Congress on the progress of the plan

 

The Significance of the Act

The National Plan to End Parkinson’s Act honors Representative Gus Biliarakis’ (R-Fla.)’s brother, Dr. Emmanuel Biliarakis, who died of Parkinson’s in May 2023 and Congressional member Representative Jennifer Wexton, who is currently battling Progressive Supranuclear Palsy (PSP), a rare neurodegenerative disease.

With 90,000 new diagnoses each year, Parkinson’s is currently the fastest growing and second most common neurological disease. Over 1 million people in the U.S. live with Parkinson’s disease. On average, Parkinson’s costs the U.S. over $52 billion each year. The recent discovery of a Parkinson’s biomarker offers promise that a lasting cure is on the way.

 

The National Plan to End Parkinson’s Act is a no-cost form of legislation that will create a council to promote “efficient and effective coordination of federal entities with responsibility for diagnosing, treating, preventing, and curing Parkinson’s disease.” This marks the first time the federal government will unite around this cause, making it not only significant but historic. 

 

Gain Therapeutics is incredibly excited to share this news in conjunction with our ongoing partnership with the Michael J. Fox Foundation, of which the Public Policy team sent over 850 advocates to congressional meetings to help the passing of this bill. 

 

^1. https://www.michaeljfox.org/sites/default/files/media/document/National%20Plan%20One-Pager%202024%20-%20Final.pdf

 

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