"From Pope John Paul II to Muhammad Ali and Janet Reno, Parkinson's disease (PD) knows no gender, race, religion or national origin; anyone can be impacted. We need to act now." Ray Dorsey, MD, a neurologist at the University of Rochester Medical Center, said these words to a room of Capitol Hill staffers during a January 17 briefing sponsored by the Congressional Caucus on Parkinson's Disease, a group of lawmakers who seek to elevate issues of importance to the Parkinson's community in Washington.
The briefing, "Parkinson's Disease: A Modern Pandemic," also featured PD advocate Myra Hirschhorn and James Beck, PhD, Parkinson's Foundation's chief scientific officer. Panelists educated lawmakers on life with Parkinson's, the disease's projected growth and the need to accurately determine how many people have PD.
Myra Hirschhorn began the briefing by discussing her grandmother and late husband's experiences with Parkinson's. She noted that beyond the person living with the disease, PD also impacts care partners, who are often close family members of patients. Myra highlighted the role Congress can play in helping to improve the lives of people with Parkinson's and their loved ones. "Please ensure National Institutes of Health (NIH) funding is increased so we can find better treatments and a cure, and support our nation's care partners so that future patients will have a better experience than past ones," she said.
Dr. Dorsey explained that Parkinson's is the fastest growing of all the neurological diseases, and the number of individuals living with PD is estimated to double by 2040. While pandemics are usually associated with infectious diseases like Zika and influenza, he argued that PD's growth qualifies it as a pandemic.
"One important way to address the rise in people diagnosed with PD is to create a national plan for Parkinson's, including increases in NIH funding and greater access to care through telemedicine," Dr. Dorsey said during his presentation.
Dr. Beck spoke about a project he's leading at Parkinson's Foundation to better determine how many people are living with PD in the United States (also known as disease prevalence). Current estimates of Parkinson's prevalence are outdated and do not accurately reflect the number of people impacted by the disease. Dr. Beck urged Congress members to provide more support for PD research and care, noting that more accurate prevalence numbers will help scientists and policymakers target resources.
U.S. Congressman and Caucus Co-chair Gus Bilirakis (R-FL) welcomed the audience and presented opening remarks. In addition to the Caucus, The Michael J. Fox Foundation and Parkinson's Foundation also sponsored the briefing.