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New Study Shows Nearly Half of Americans with Parkinson’s Don’t See a Neurologist

Doctor with tablet.

A new study identified critical gaps in care for people living with Parkinson’s disease (PD) in the United States, including disparities affecting underrepresented communities, such as women, residents of rural areas, and those who identify as Asian, Black, Hispanic/Latino or Native American. The study, supported by The Michael J. Fox Foundation (MJFF), Parkinson’s Foundation, NORC at the University of Chicago and Perelman School of Medicine at the University of Pennsylvania, recently published results in npj Parkinson’s Disease.   

The recently published study, based on 2019 Medicare data representing 90 percent of Americans living with Parkinson’s, showed that only nine percent of people with PD received care that year from movement disorders specialists (MDS), the expertly trained neurologists who can recognize PD’s distinct nuances and tailor treatments to each patient. An additional 51 percent of Medicare beneficiaries with PD received care from general neurologists, leaving 40 percent of people with PD receiving care from a primary care physician or no physician care at all during the year. And utilization rates of physical and occupational therapy, speech-language therapy and mental health services were strikingly low. Only 20 percent of people with PD saw a physical therapist, for example.  

The data analysis also revealed significant access disparities persist for women, underrepresented communities and residents of rural areas — each possibly facing increased challenges receiving diagnosis and treatment. 

Parkinson’s research advocate Richard Huckabee, age 63, shared his story with the leading scientific outlet STAT about the challenges he faced in his nearly decade-long journey to receive a diagnosis and access care. As a Black man, Richard experienced ongoing disparities when, alongside his wife Angela, they sought answers from multiple physicians: 

“We don’t fit the profile. Some of the doctors said I’m taking it too serious. Some of them said, ‘There’s nothing wrong with you.’” 

(Read the full article in STAT here.) 

The more Parkinson’s patients we see having critical gaps in care, the more it underscores the need to invest in research and care toward better treatments, a cure, and one day, prevention. The Michael J. Fox Foundation’s goal is to improve quality of life for people living with Parkinson's disease by ensuring they can access the physicians, care and therapies they need to treat and manage their disease.  

So, how do we help meet this growing need? 

Study co-author MJFF’s Rachel Dolhun, MD, senior vice president of medical communications and double-board-certified neurology and lifestyle medicine physician educates and engages the next generation of Parkinson’s doctors through programs designed to stimulate interest in movement disorder careers and fund necessary training.    

She noted the study helps reaffirm the critical need to expand expert Parkinson’s care across the globe. Depending on where they train, some doctors and other clinicians may get little exposure to PD care and research. To help fill this gap, MJFF, with partner the Edmond J. Safra Foundation, sponsors the MDS-PAS Movement Disorders School for Neurology Residents. Now in its seventh annual year, hundreds of attendees from around the world learn the latest in Parkinson’s care and research from internationally recognized movement disorder specialists, people living with movement conditions, and peers. For many, the program confirms or inspires an interest in pursuing a career in movement disorders, caring for people with PD and leading research toward better understandings and treatments. For those who do not choose movement disorders, the course is an essential tool to enhance PD care. 

This MDS course complements MJFF’s Edmond J. Safra Fellowship in Movement Disorders, a program launched in 2014 created to help build a global network of Parkinson’s doctors. Now in its ninth year, the Fellowship has trained 27 new movement disorder specialists to date and is on track to graduate 72 by the year 2028. As Parkinson’s specialists see an average of 600 people with PD and other movement disorders every year, this growing network of fellows is able to make a significant impact. Get to know this distinguished network of Parkinson’s doctors and learn more about the critical value of movement disorder specialists here. 

The npj Parkinson’s Disease report on Medicare PD care also holds tremendous value to our federal advocacy efforts by providing a robust analysis of the federally funded program that provides health coverage for the majority of Parkinson's patients in the United States. Our team, alongside a nationwide network of advocates, will leverage the data and insights produced by this study to reinforce our efforts to improve how the Medicare program serves beneficiaries living with Parkinson's and eliminate health inequities. Sign up here to advocate for policies that will improve quality of life for all people with Parkinson’s. 

“While a lot of work remains in order to provide expanded care services for people and families living with PD, this is a critical step in understanding the disparities in access to expert care across populations,” said Ted Thompson, JD, MJFF’s senior vice president of public policy. “Studies like this can paint a fuller picture on the public policy priorities that all people with PD and their families need to live a better quality of life with the disease.” 

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