Capito’s bipartisan, bicameral bill to end Parkinson’s disease slated to be signed into law

A bipartisan, bicameral bill introduced by U.S. Sen. Shelley Moore Capito (R-WV) that requires the U.S. Department of Health and Human Services to carry out a project to prevent and cure Parkinson’s disease is now headed to President Joe Biden’s desk to be signed into law. 

The U.S. Senate on May 23 passed the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, H.R. 2365, which the U.S. House of Representatives approved in December 2023. 

“The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act is common-sense legislation that will establish a robust response to address the disease and move us towards new treatments and a cure,” Sen. Capito said. “I’m thrilled to see it pass the Senate and on its way to becoming law.”

The House version was introduced on March 29, 2023 by U.S. Reps. Gus Bilirakis (R-FL) and Paul Tonko (D-NY), while Sen. Capito on the same date sponsored the identical S. 1064 alongside lead original cosponsor U.S. Sen. Chris Murphy (D-CT). 

The measure was renamed in the House to recognize Rep. Bilirakis’ brother, Dr. Emmanuel Bilirakis, who died in May 2023 after a long battle with Parkinson’s, and colleague U.S. Rep. Jennifer Wexton (D-VA), who is battling the rare neurodegenerative disease, Progressive Supranuclear Palsy, which is also known as an atypical parkinsonian syndrome or Parkinson-plus disorder.

The bill is the first-ever legislation solely devoted to ending Parkinson’s disease, a progressive brain disorder that causes unintended or uncontrollable movements, according to the lawmakers, and the measure aims to unite the federal government in a mission to cure and prevent Parkinson’s and related conditions, alleviate financial and health burdens on American families, and reduce government spending over time.

“I have talked with, seen, and heard so many stories of West Virginians impacted by Parkinson’s disease,” said Sen. Capito. “Whether they are living with the disease or caring for someone impacted by it, Parkinson’s takes a terrible toll on the physical, mental, emotional, and economic well-being of everyone involved.”

The Michael J. Fox Foundation for Parkinson’s Research and the West Virginia University Rockefeller Neuroscience Institute are among supporters of the bill, which will create an advisory council comprised of members of federal agencies that support research, care, and services for Parkinson’s, as well as caregivers, patients, and other non-federal experts, according to a bill summary provided by Sen. Capito’s staff.

The council will ensure coordination among federal entities with responsibility for managing, treating, and curing Parkinson’s disease; evaluate all current federal programs related to Parkinson’s; write a national plan to prevent and cure Parkinson’s; and report to Congress on progress toward the plan’s goals, the summary says.

“As the number of people diagnosed with Parkinson’s is expected to rise to more than one million in the next few years, we need real collaboration across the public and private sectors to fast-track promising research, develop better treatments, support patients and their loved ones, and find a cure,” said Sen. Murphy. “I’m proud to have helped get this legislation across the finish line so we can finally establish a national plan to end Parkinson’s once and for all.”