A pandemic is typically seen as an infectious disease that spreads easily across geographic boundaries, often having a worldwide impact. Influenza and HIV are prime examples.
But Dr. Ray Dorsey, a neurologist with the University of Rochester Medical Center, and Dr. Bastiaan Bloem, with Radboud University Medical Center in the Netherlands, are warning public health officials about a looming pandemic that doesn't fit the usual definition: a Parkinson's disease pandemic.
Public health officials need to ramp up preparations for treatment and care of a large population of people with the immobility and health issues frequently associated with the disease, Dorsey and Bloem wrote in the latest issue of JAMA Neurology.
"Neurological disorders are the leading cause of disability worldwide," Dorsey says. "And Parkinson's growth is outpacing Alzheimer's disease." The prevalence, disability, and deaths related to Parkinson's more than doubled from 1990 to 2015, Dorsey says.
Parkinson's is a neurodegenerative disorder, and as it progresses people may develop tremors, rigid limbs, and problems with balance. About 10 million people worldwide are living with Parkinson's, with about one million of them in the US, according to the Parkinson's Foundation.
That number is expected to double during the next 20 years, Dorsey says. Men are more likely to develop the disease than women, and although it is often associated with aging, about 4 percent of people with Parkinson's are now diagnosed before age 50.
About 3,000 people in the Rochester area are living with Parkinson's disease, Dorsey says.
Disabilities were historically the result of violence, trauma, and infections like polio, Dorsey says. But the change to neurological disorders as the main cause of disabilities is particularly alarming, because Parkinson's disease diagnoses will increase exponentially as the US and global population ages, Dorsey says.
Rising costs of care is the other concern. A 2010 study showed that the treatment of Parkinson's disease alone was costing the US about $14 billion annually, a figure that is sure to skyrocket, according to the study. Public health systems could easily be overwhelmed when other neurological disorders like Alzheimer's are included in those costs.
Parkinson's disease is treatable, but for many patients access to treatment isn't easy, because many have problems with mobility and transportation, Dorsey says. That leads to additional problems.
"You have a lot of people who are driving-impaired," he says. "About 40 percent of patients over 65 have medical insurance coverage through Medicare, but don't receive the medical attention they need," he says. That means people with Parkinson's disease are more likely to fall and fracture a hip, and they're more likely to be placed in a hospital or skilled nursing facility, he says.
Dorsey is urging the Parkinson's community to be much more assertive about advocating for more research funding.
"Activism in the HIV community is the playbook for being heard," Dorsey says. "They were absolutely right when they said, 'Don't suffer in silence.' We're not moving quickly enough to meet the needs of what's ahead with this disease."