After a US Senate vote on May 23, 2024, the “Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act” will head to President Biden to be signed into law, after having passed a vote in the US House of Representatives in December 2023. It will become the first piece of federal legislation aimed at ending Parkinson’s disease, multiple system atrophy, and Lewy body dementia.
The law is named for Congresswoman Jennifer Wexton (D-VA), who suffers from progressive supranuclear palsy, a neurodegenerative disorder related to Parkinson’s disease, and Dr. Emmanuel Bilirakis, a primary care physician who passed away from Parkinson’s. His brother, US Representative Gus Bilirakis (R-FL), is co-chairman of the Parkinson’s Disease Caucus and sponsored the bill.
The bill states that the Department of Health and Human Services (HHS) will “(1) implement and periodically update a national plan to coordinate and guide efforts to prevent, diagnose, treat, and cure the disease; and (2) improve the care of those with the disease. HHS must also annually assess the preparations for and response to the increased burden of Parkinson’s disease.” About one million people in the US are currently living with Parkinson’s disease, and recent research estimates that up to 95,000 new cases are diagnosed each year, making it a major burden on the healthcare system that will continue to grow as the population ages.
The bill aims to bring together members of several federal agencies and 10 expert non-federal representatives such as biomedical researchers, caregivers, patient advocates, and members of nonprofit organizations to form an Advisory Council on Parkinson’s Research, Care, and Services. The council will meet quarterly and advise the Secretary of HHS on Parkinson’s-related issues.
Other key components of the bill include:
- promoting the early diagnosis of Parkinson’s disease
- improving health outcomes and quality of life
- reducing the financial burden of Parkinson’s
- researching environmental triggers for Parkinson’s
The CND Life Sciences team attended a symposium where Rep. Wexton was delivering special remarks when the news of the bill’s passage was announced. “Rep. Wexton’s relentless commitment to this bill underscores the importance of a united front to effectively accelerate innovation, strengthen awareness, and enhance access,” said Kathryn Van Wie, VP of Global Strategy at CND. “We are inspired to join forces to improve the lives of those impacted by Parkinson’s and related diseases.”
Read the bill here.
